The Unlicensed Monkey

I knew it was coming.  I knew back in August when it was suggested that I don’t drive until we figured out what was going on.  After six months of seizures, I had one in the neurologist’s office.  It confirmed a lot of our suspicions.

I was the one who printed out the forms from the DMV for the handicap placard and the medical form to evaluate my ability to drive.  When we left the office, it was about a week before I was told that the paperwork had been sent to Carson City and I was allowed to have a copy.  At the time I did not ask how the forms were filled out.

The last time I drove was in August and I voluntarily gave up driving because I knew it would be unsafe.  I spent six months wondering if I will ever be able to take my last road trip or if I took it already.  I tried to not worry because I have very little control over the situation.  So, life went about at its usual pace and I just let it simmer in the back of my mind.

Last week, I hobbled myself out to the mailbox and as soon as I opened the little door, I could see the distinctive white envelope with a blue corner and for every thing they send, the corner also has a strip of another color like red for license violations and white for renewals (this is just an example, I don’t have THAT kind of free time, guys!).  There was a color I had never seen before; pink.  I grabbed all of the mail, locked the box and hilariously tried to fumble through the mail while walking with a shillelagh and a weak left side.

When I got in the house I plopped the mail on the ironing board, locked the door (to keep the creeps out and the weirdos in), and I quickly grabbed the envelope and my heart sank as I realized that this envelop held no placards.  I slowly opened the letter and read the letter.  It acknowledged how wonderful it is to have the privilege to drive in the state of Nevada and how much I must enjoy it. They got me there!  I SURE LOVE driving!  Then the tone changed and it mentioned that while it may be unpleasant, I need to turn in my license due to medical conditions that may make it unsafe for me to drive.  Then it mentions that while it is inconvenient, if I don’t do it my license will be revoked before sliding into the cheerful possibility that once the grey skies of my health clear up, I will be able to get my license back once the doctor approves and submits paperwork.

I cried.  Not excessively (because I am somehow steeped in toxic masculinity practices) but I mourned the loss of one of my most cherished activities.  I have driven all over the place and had plans to go to more places.  Then I packed up the letter and took it to church with me.  I gave it to my stepdad and cried more during service.  A piece of my independence has been legally suspended due to no fault of my own but the single action of another person on a random day several years earlier.

Today, my license was mailed to Carson City where it will reside until I can drive again.  For now, this is no longer a concern.  I think not diving voluntarily made it a little easy because it wasn’t just taken from me.  I don’t think people understand how traumatizing it is to be “normal” one day then have a list of life restrictions the next.  For me, personally, my memory loss makes the whole thing more absurd to imagine.  It seems like I was driving yesterday.  Anything that I can remember seems like it JUST happened.

I expect my daughter to be driving soon enough.  I always thought I would be the one to teach her, but I am no longer a valid driver.  I can barely get up some days.  At this point I am thankful to be able to walk, even if I have to use the cane everyday.  Driving may or may not come back.

People ask me how I can remain positive through these times.  I go back to my toxic masculinity trait (inherited from my dad’s side, of course) and I try to not put all of my sorrow and grief out for the world to see because I am fighting a private battle.

“But, Michelle, you write an extremely personal blog!” I hear someone saying.

Of course, because I want to pull back the veil on the personal dealings of someone with chronic illness, however I choose not to clothe myself in misery because I know that I am not the only person in the world or in my circle who deals with issues.  We help keep each other encouraged.  I am a minister at church, I am expected to show decorum at most times (sometimes I go a little ham, though) and I believe a lot of that is showing people that I will not allow my condition to let me treat people poorly or sulk for attention.  I actually prefer that the attention be off of me because I am just a servant in the church.

When I go home, I can open up to my family about my feelings and so forth.  I have multiple therapists that I talk to about what I am going through.  I try to find creative outlets for myself that allow me to express my negative feelings in a positive way.  That is really why losing my license hurts.  I love cooking for people and dropping food off to them when they don’t feel well.  Volunteering to cook and feed people in other places was one way I worked to find joy in the abilities I that I had left.  Now even cooking for my family is difficult.  Still, I know my way around a kitchen and I just take my time.

The biggest benefit in my opinion is that I will never be at-fault in an accident, also I love looking out the window and enjoying the view of the city and out lovely mountains.  Las Vegas has great mountains and canyons.  The city itself is kinda interesting from a distance.

Losing something cherished doesn’t mean there will never be meaning in that part of life.  I think it is up to us to discover how to get the experience when we are restricted.  I am looking at traveling the country by railway.  I don’t have to drive, I can see all of the views, I can have my own room, and experience something that has never crossed my mind in a serious manner.  I look forward to my first trip and you know I will blog about it.

I hope you find peace with your body.

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If A Monkey Had The Chance…

Today my sister asked me how my new meds for seizures was working.  I told her that I think it may really be working.  Of course, it makes me sleep half of the day but everyone tells me that my body should get used to it in a few weeks.  Suddenly, my whole mind opened up and I saw myself as an actual contributing citizen again.

I pictured myself waking up and going to work, coming home, making dinner, taking a shower and going to bed and doing it again for another thirty years.  If I were somehow able to pick up what is left of my life, I would recede into the background and go back to a quiet life where I only sought the comfort of my pets.

There would be no funerals to direct or classes to study for and teach.  No walks or charity cooking.  Just living my life the way I always wanted.

Of course I have to ask myself how do I justify leaving the arena of charity work?  I wouldn’t be!  I would simply make a lateral move to the funding portion.  Instead of seeking funds, I would be in a position to provide funding for research.  That is my biggest hope is for more funding and I am not sure that it matters how I achieve that as long as it is legal and moral.

Even at church I would simply move from minister to congregant and that doesn’t mean I won’t help people or read my Bible, but I am not going back to working AND being a minister full time.  There was a time when I wanted to devote my life to serving in ministry, and since that came to fruition my life has been a wreck and I hate living this life.  I hate having feelings and having them hurt.  I hate this broken body and brain.  I hate having to be a good example all of the time.  I hate feeling lonely and forgotten.  I miss the touch of humans but not their over-perfumed hugs.

The thought of feeling like my life is “normal” again is tantalizing.  Yet, in my musings of doing what I want to do, I feel like I would end up with a type of chasm in my self that I would try to fill with something.  Or maybe I could just learn how to chill out.  Maybe the chasm can co-exist with the rest of me.

Does this make the time, energy, and money I have put into awareness and fundraising worthless?  Of course not.  For the time when I had nothing better to do, I helped raise awareness.  I have devoted many hours of my life and the lives of many other people to raising money for Chiari Malformation.  I just want to be a different part of the process now.

I just don’t understand why I feel guilty about it.  Do I owe my everything to everyone?  How much do I have to give back for it to be enough?  What standard am I going by?

Most important, what if I am not able to go back to work anyway?  Will I continue doing charity and awareness work because I feel obligated or like I have nothing better to do?  Will I remain doing the same thing day in and day out because this is the hand I have decided to play?  Is that wrong?  I have no idea.

This is one of the reasons that I hate hoping for anything.  Nothing worth anything has ever come of my hoping.  I will be crushed if my doctor takes my license.  I will feel useless if my disability goes through and I am legally “disabled”.  I am not sure what you call the next step after you feel your life has been ruined and then destroyed.  Vaporized?

I don’t know how things will turn out.  I got the referral to the seizure clinic in Cleveland, but if the meds work, what is the point?  I am not about wasting money or time.  So much has been wasted in the past three years.  I think this weekend will show how well this medicine is really working and then it will hopefully shed some light on future things to come.

Honestly, though, if I were given the opportunity to go back to to life making money and paying taxes, I wouldn’t look back.  I would archive my blogs, change my social media, and just be a normal person and maybe never talk about this dark time in my life.  I would love for this to be forgotten like all of the memories I have lost along the way.

The Monkey’s Phantom Pain

So, my left foot felt like it was being stabbed in the sole last night.  My left hip was in pain, and I assumed it was just my body looking for more attention.  As we left church, the pain became just a burning sensation when I tried to walk or it touched something.

I wake up this morning, step on the left foot and the whole thing hurts up to my ankle.  So, I stepped on the good foot, and hobbled my way through the morning until I couldn’t take the pain anymore.  While all of this was going on, I was blessed with cramps (yay, no baby!) and my headache began to intensify.  I already know that Headache + Cramps = FIRE IN THE HOLE!  I have already apologized to my family members in advance because I can’t get my shot until Tuesday and by then, the house could be on fire.  Not literal fire, but mass emotional upheaval.

I decided to take a nap.  I wasn’t sleepy, but sometimes the pain wears me down enough to just sleep.  Sure enough, I woke up, put down my left foot and now the pain has risen above my ankle.  It’s making it hard to walk and the shillelagh is becoming my best friend.

There isn’t much to do until I see the neurologist.  Four days away.  I suppose by the time you read this I will have already gone, but will have posted an update!  It is difficult to just wait but really nothing that can be done about it.  Most appointments have been cancelled so that I am at less risk of hurting myself.  I am hoping that I can get through these next few days gracefully.  Especially Sunday.  I plan to be at church no matter the pain.  I just have to keep my mouth under control while I am there.

The biggest issues are pain and boredom.  When I am in this much pain it is hard to focus on something enough to be entertained or distracted.  I suppose that is why I just try to sleep.  I don’t take pain meds and while some of my meds help with nerve pain, I can only take them so often because of their side effects and they weren’t prescribed for acute onset pain, so they aren’t the way to go.  I hope that the neurologist has a plan because otherwise, we gonna talk about getting a new brain.  There is nothing wrong with my leg!  I have had it tested.  It is fine.

For me, that is the most difficult part to accept.  I can handle my foot hurting because it was run over by a car or I dropped something heavy on it.  I cannot wrap my mind around my body feeling this way just ‘because’.  The nerves are upset today so they are in rebellion.  Well, that’s just great, we couldn’t save this for some other time when I was less busy?  I have no time for this nonsense.  Yet here I am, dealing with this nonsense.

How many people out there are dealing with this nonsense?  Nerves getting on your nerves?  ME TOO!!  Random muscle spasms?  ME TOO!!  One leg in pain and the other asleep?  ME!  TOO!!

Where do we go for respite?  I know not!  What I do know is that eventually, I will have some kind of answer as to what is happening in my body.  I have hope when I get answers that it will help others to get answers also.  We have to be the lights in the darkness because right now, medical science has so much to learn about the brain and we are the key.  We have to be willing to endure pain and tests and waiting and tests and surgery and tests and even tests!  I chose to disregard pain management because I don’t want a bandage.  I want my wound tended to and healed.  If that means it hurts, well, there’s always sleep.

I don’t expect everyone to make the choices I make because we each have to do what is right for our own lives.  If I were able to work, maybe my pain management choice would be different.  I did try it. Facet shots in C3 and C4 and I remember the sound of my tears hitting the floor as they moved from one area to the next.  I was strapped face down and there was a hole my head rested in where I could see all the feet and the floor.  I had to cry in silence so nothing would be damaged in the process.  So it isn’t like I haven’t tried.  Since opiates do nothing for my pain and they haven’t given me any type  of actual diagnosis relating to my nerves, I am going to just wait until we figure out the problem.

The nerves function from the neck down.  Anything I feel is originating in my brain.  See, that is where the hard part lies.  We understand the heart and how it is built and functions.  We understand muscles and bones and lungs, but we are severely lacking when it comes to knowledge of the very organ that holds our knowledge.  Somehow, this jelly-like pink blob full of wrinkles has control over not only the functions of the body, but also forms the very thoughts and ideas I am using to write about it.

We know that it can be injured and people can survive.  We know that injury to it can lead to change in personality.  We know that some people are just born with brains that seem off or different from the majority either in a good or bad way, depending on the difference.

We don’t know the actual mechanism by which it functions and malfunctions, though.  We have our theories.  Most neuro medications are based on the theory of how certain receptors work.  Then when something major goes wrong, we aren’t sure why, but that is what starts giving us insight.  So, I want them to find out all they can from my brain and add it to the existing information so that one day a cure for Chiari Malformation can be found.  Or a better treatment plan for ANY brain issues.

If your brain is being a jerk, know that I understand.  Don’t hate on yourself because of your brain, even if you really want to because your brain is special and the right doctor will help you understand why and how to help.  It takes time (I was decompressed THREE YEARS AGO!!) and that time may not be fun or easy, but you can help be the key that unlocks the mysteries of the brain.

Still, if you are able, take time to rest and sleep.  Journal and talk to someone who can listen.  Don’t let the pain overtake your beauty.  Let your hurt out and allow others to help you bear your burden.  Our loved ones often don’t know what to do, so it is up to us to inform them that we just need someone to listen and possibly make dinner tonight.  Also, LOOK FOR JOY in things.  Flowers, birds, puppies, trust me, this helps balance out negativity.  We get to choose how we handle even the worst of days.

Choose wisely.

Monkey Connecting To Others In Tree

My left side hurts.  Today I went to church and several people asked how I had been hurt.  It’s hard to say it just hurts on the inside (in multiple ways…) but it’s even better when someone in a wheelchair asks why I have a cane.  We have known each other for a while and I have asked him before why he was in a wheelchair, but I could never remember.

I explain to him about my ongoing issues and he is familiar with a lot of it.  I remembered, and tonight I looked up Guillain-Barré syndrome.  It is an autoimmune syndrome that affects the peripheral nerves.  He told me he was a hard working crane and heavy machinery operator and one day he just fell down on the sidewalk and nothing worked anymore.  He knocked himself out and was in a brief coma.  Now, he is just happy to be alive.  He can’t walk or use his fingers, but he loves church and Jesus and he is a wonderful person to be around.  He said he was glad that I was still able to walk.  I told him I will walk with this cane until I can’t anymore!

Making a connection with people that is deeper than hi and a hug has helped me see that there are so many people who suffer in silence, some who suffer and are not heard, but mostly that I am not alone in having troubles with my body.  In the end, all illness is uncomfortable and not preferable.  Knowing that we have each other to lean on and go to is important.

A support system is almost vital to make it through very difficult medical situations.  My sister cared for me like a 4 years old for 5 months, pre and post brain surgery.  My parents took care of my daughter and eventually took me back in and we stay with them right now.  My dad came out to help for a few weeks and helps fund life.  I don’t work, yet somehow, I am very high maintenance because of my health.  I have to be comfortable and entertained and at times watched over because I will burn a house down.

Gravitate toward the people who will love you and care for you, and be willing to do the same in return.  Sometimes I am not the center of attention in the family and I get to be a supporting character in someone else’s medical drama.  It’s me a lot though.  Oh well!  We’re working on it!

 

Mellow Monkey Memory

Yesterday was a wonderful day as my daughter and sister returned home to Las Vegas.  They were gone just shy of one month.  Many people have asked me how I just send my daughter away.  Well, there is some back story to this.

See, in The Before Time we tended to go on mini and not-so-mini road-trips.  My dad enjoys travel, so he would offer to take us to Disney and Niagara Falls, but I wasn’t able to go because of my work schedule.  I sent my sister in my place and gave my daughter the opportunity to explore as many cities, states, and countries as possible.  I didn’t even have to pay for anything for her, she just got free trips to many places.  I was so thankful for those opportunities, however, there were moments I missed like when she had lunch with the Disney Princesses on her birthday.  However, she loved it and I realized that she will experience most of her life without me right by her side.

My parents allowed me to travel by bus all over the US to visit people.  I learned so much about being responsible and personal safety and I also learned that people can be weird enough to probably be dangerous.  You just never know.

Right now, my daughter is watching me deteriorate and is a little freaked out by it.  A LOT freaked out by it.  I do not expect my 16 year old daughter to understand the intricacies of brain damages and cognitive dysfunction, and she reacts just like many other teens would.  She withdrew into herself and tries not to have to watch me be in pain.  If I can spend 30 minutes with her it is a miracle!  I am no longer the mm that can stroll the mall all day or spend the day driving around to places to shop.  I can’t even drive anymore.  I don’t want to go out and eat.  She doesn’t understand what the pain is like.  I hope she never does.

So, if allowing her to move to Seattle with my sister is going to stabilize her and bring her back out of her shell and allow her to blossom, then who am I to keep her here because “she is my child”?  I trusted my sister to take care of her while I went to multiple jobs and school, nothing has changed.

My sister will take care of her and we will visit each other and text and talk and it will be fine.  From Seattle she can visit so many places and see so many things that I just can’t do with her.  When I see her, we will take a relaxing ride on a train along the Northern border and live that train life for a couple of weeks.  Our time together will just be different and more laid back.  She can have excitement with Auntie.

Like most parents, my goal is to do what is best for my child, not what feels best for myself.  If you find yourself in a situation where your child can fare better with another adult who is more than willing to take them, don’t feel like you are being a bad parent to let them go.  Sometimes being a good mom means taking time to put yourself back together and get set in your new normal.  When the time is right, they will be back and hopefully life will enjoyable again for everyone.

I talk to my daughter everyday so she knows that this is a big concern for me.  We talk about our feelings of being away from each other and how we can deal with it together.  In this situation it is imperative that we communicate so that she knows I am trying to do what is best and that I don’t want her to go, but I know it will be the better option.  I need to know how she feels and assure her that I am taking her thoughts and feelings into consideration.  We need to be able to understand each other so that there are no feelings of abandonment or loss.  I hope she has a stellar time.

So, keep an open mind, heart, ear, and mouth.  You will make the right decision!

Memory Logged Monkey

So, with neuro rehab, which is done with a speech therapist we are starting at the beginning which is external and internal memory devices.  I am actually pretty adept at figuring out how to get around my impediments.

My most/least favorite is my memory log.  It is lowkey cool to always look like I am taking important notes, but really, I am just trying to remember that I talked to a certain person or bought something somewhere.  Or I need to schedule an appointment

I love it because it is a log of my life in my own writing which makes it easier to believe that time is actually passing and new things are happening.  It is also a way to help me remember to do something throughout the day, which is take notes.  So, now, my Rocketbook is my best friend.

I hate it because I also have to reread these things and my life is SUPER boring, so it is like reading and encyclopedia but with less important information.  It usually seems familiar but I can’t say that even with the reading it that it is setting the memories.  However, it took more than a year for my brain to degrade so, i think it is ok if it takes some time to get it back to normal or whatever it will be.

The next few weeks will be spent writing and reading and hopefully the actions with open new neural pathways.  When it comes to this type of issue, it is hard to not want it resolved quickly, but in my case they aren’t exactly sure what is wrong, that is why we are dealing with so many areas of my health, so we can rule things out, gather information and figure out the answer.  If there is an answer.

In the meantime, I am going to try to enjoy this life of writing about my life because I need these stories to be more interesting!

The Resolute Monkey

Just taking some time to reflect back on 2018.  Many things happened.  I don’t remember most of them.  I know I got into the Lou Ruvo center finally.  Started (or continued and learned about) seizures.  Finally settled the lawsuit concerning the accident and I did not go into debt!  Paid lawyer 30K+.  Felt like a real adult.  Got my driving privileges suspended.  Received my handicap placard.  Did not go on a single date.  Got some great haircuts.  Took a wonderful staycation.

As always life has been a mixture of good and bad and I am thankful that I made it through my third year after surgery.  I figured that I would be in my own home with an SUV by now, and as it turns out I couldn’t be farther from that vision.  It’s hard to be in the process of transition for this long.  I feel like I have nothing, I do nothing, and I am nothing.  Not that I don’t have many great qualities and talents, but that they are all on hold, so they are a bit useless in this state.

I don’t think things will stay the same in the coming year.  I think my disability case will move along and I will hopefully be moving into my own place.  I sometimes wonder if that is really the best, but I need my space and quiet.

One thing I want to do better with next year is socializing.  It’s hard to be friendly when my head is killing me.  If this is going to be a permanent thing that I have to deal with,  then I will learn to deal with it more gracefully and try to enjoy the company of other people more.  I still want to focus on myself and my health and needs, but I need people in my life and I need to keep my support circle strong, so it is time to come out again and be a little more friendly, even when I want to break ALL of the necks.

I think it will be a positive experience and I think I will benefit from going against my own grain.  I also don’t want to become someone who is so set in her ways that I can’t accommodate other people when it is the right thing and I am able.  I want to publish my book.  I also want to write a Bible Study that will open people’s eyes to chronic pain and illness.

Barium And A Monkey

At the end of December, making a doctor appointment is like pulling toenails.  When I was told I needed a barium swallow study I was confident that it would be in the second or third week in January. That was a Friday.  Tuesday they called and had a cancellation for the Friday coming up.  Friday in three days, Friday.  I already had two appointments scheduled for the day but this is like, a white stag.  I booked the appointment for first thing in the morning.

First, it was NOTHING like anyone told me it was going to be.  Everyone said there would be a thick liquid and a thin liquid.  My sister warned me not to take the chocolate flavor.  What follows is a transcript to the best of my memory of what happened at my Barium Swallow Study.

-Tech comes to get me, asks for identifying information, leads me to a room with many, many cups with different liquids in them.  I see some small cups with spoons and something inside.  I see obviously adulterated Oreo cookies and an unopened mini Slim Jim.

-Tech: This is orange juice.  Put a sip in your mouth and put your hand up when you are ready to swallow.

-Me: Ok.  (I take the cup, look inside and it was like chalky orange juice.  I put it in my mouth and put my hand up.)

-Tech: Ok, swallow

-Me: (I tried to swallow but my throat refused that mess, eventually, I was able to, but I aspirated some of it…I had to drink more.)

-Tech: Here is the chocolate milk, it is a little thicker.  Same as the other, raise your hand when ready.

-Me: My sister said not to drink this, but ok.  (I drank it.  I tried to just deal with the flavor because I NEED answers.)

-Tech: Take a spoonful of this applesauce and wait to swallow.

-Me: (At this point I am horrified.  I do not know how this barium is getting in everything and turning it into a science experiment color.)  Um, ok.  (IT WAS AWFUL HOLDING IT IN MY MOUTH!!!  Then they let me swallow and gave me some water.  Finally got that nasty taste out of my mouth.  I was also squeezed into a radiograph (I think) sideways which is about two inches smaller than my shoulder width.  I watched in horror as she delicately picked up one of those terrible looking oreo cookies and handed it to me.)

-Tech: Ok, chew this cookie and raise your hand when you are ready to swallow.

-Me: Oooh, I see.  (I put the abomination into my mouth and began chewing and it was like my tongue didn’t want to touch it to move it around.  I finally got it all chewed up and raised my hand.)

-Tech: Swallow

-Me: (I swallow and feel the cookie is stuck, so I point to my throat.)

-Tech: Stuck?  Ok Turn around so we can see the front view.  Swallow.

-Me: ( I swallow again and it gets stuck farther down, so I point to where.)

-Tech: Here, drink this water while we watch.

-Me: (I drink the water and at first it goes around the cookie, then washes it down.)  Glad that’s over.

-Tech:  Turn sideways again.

-Me: (I turn, wondering what on earth we are about to do after the cookie.  Then I see her grab the miniature Slim Jim and open it.  I was so excited until she used her other hand to grab a large white tube labeled ‘BARIUM PASTE’ and she proceeded to squeeze a huge glob of it on the end of the beef stick and I ’bout died.)

-Tech: Chew this well and let me know when you are ready to swallow.

-Me: *sigh* Ok. ( I took a bite and it was just, it felt like forever.  I raised my hand and she told me to swallow and it got stuck.  She had me turn around and swallow again.  It was right at the top of my esophagus at the sphincter.  It took a good amount of water to get that into my tummy.  It felt terrible the whole way down.

-Tech: It seems that you may have delayed peristalsis in your esophagus.

-Me: Ok, so back to the GI.

-Tech: It also seems like you have a slow epiglottis.

-Me: (I think I was under a lot of stress because I have never been so offended at the description of a body part of mine and I just wanted to show her how fast I can pin her to the floor.  Thinking back, it was an odd thing to be upset about.  I am glad I held my composure and I did not end up in jail.)

Later that day, I had speech therapy, and it is a therapist from the same office who does the swallow studies.  My therapist was telling me that I was not crazy, there is definitely something happening in your throat.  She said we will be asking for referrals for a more top to bottom swallow study.  Possibly an upper-endoscopy.  Unfortunately, because it involves my throat, I have to take care of it before swallowing becomes a problem.

This is one of the changing parts of my life that I now have to try to remember to take into consideration.  I can’t even eat like an adult.  Things that I have taken for granted my whole life now mean so much.  I can’t eat raw carrots anymore.  My SLOW EPIGLOTTIS might get me killed inhaling them.  HAHAHA.  It involves an open mind and a sense of humor to get through the curveballs my life is throwing at me right now.

I hope that if you are reading this and wondering how to deal with all of the stress off health problems, learn to laugh more.  It DOES NOT FIX MEDICAL PROBLEMS!!  It helps make the hours of therapy and doctor visits and car rides more bearable.  It can seem inappropriate, but that is just the perception of some people who probably aren’t dealing with what you are dealing with.

For Chiari and these daily headaches, there is no cure.  The only other thing I can do is cry about it and I am not going out like that.  For all these other neurological issues, I am a medical enigma right now.  We are in a testing phase, so may as well make the best of it because the tests usually get worse the further into the specialty I go.

Just a note, I did eat the rest of that Slim Jim.  It was delicious without the barium.

Monkey Changeling

For a while I have had a desire to escape the eye of the public.  Not that I am famous, but I encounter enough people who know me and know something about my backstory.  Just enough to only ask how I am feeling or how my head is doing or whatever health question they ask.  I never realized how intrusive it felt until people keep asking three years later.

I am trying to move forward with my life.  It has taken a really long time to grieve my life that I wanted.  The one I had.  Now I have another opportunity to build myself up into something else.  Maybe do something I won’t be mediocre at or fail at.  A lot of that involves focusing on everything but my medical issues.  They are always present for me, but I am accepting that they don’t make me who I am.  I still get to choose who to be.

Surprisingly, few people ask how ‘Michelle’ the person is doing.  They ask how my headaches are.  They haven’t gone away, why do people keep asking?  They ask how I feel.  I should tell them how I feel about politics or Brie vs Stilton, but I know that is just rude, so I usually just reply that I am feeling a lot.

Right now I am dealing with things I never even knew existed and trying to make it through without giving up.  My body has changed and continues to change.  My brain is changing.  My emotions are changing.  I feel a little ‘on the spot’ right now when asked how I feel about these things.  I need a break and then I will reassess my life and where I want to be and how to get there.  In the meantime, I am forming a social chrysalis so that I can go through the changes I need to experience so that I can come out fresh and new.

I feel out of place because my own mind and body are not in agreement and people just have a way of innocently making sure that I don’t forget that I have headaches.  I know they are just trying to check on me with the best of intentions.  Part of what I have to grow into, is someone who can accept all of it gracefully, because I am not there yet.

I have to figure out what my place in ministry is.  I was the feet and hands.  I went out, I made runs, I lived in the truck.  I can’t drive now.  I need a break from teaching.  I want to write and I need the time to study and just experience life for a bit.  Maybe sit in on some extra classes and just hear from other teachers.  Also, it allows me the time to focus on myself and growing personally and spiritually.

The best part about realizing all of this is that it has relieved some anxiety about wanting to hurt the church-folk.  I have to learn how to react differently because it is unthinkable that every single other person is going to change.  So, I am glad that I have realized something this simple.  I maybe should have learned earlier, but I was sure that this was all going to change.  I just didn’t think for the worst.

Hard as it is to find some sort of blessing in this, really, I have learned to be a better person, because none of this even mattered to me before my accident.  The things I have said to people must have made them want to commit acts of pain against me, and now I am thankful for the grace that people have shown me.  Especially ‘Teenage Michelle’; world, I just want to apologize for her.  She had daddy issues and did a LOT of drugs and probably said many things I don’t even remember.  I promise, she is long gone and I am sorry for anyone who encountered her.

Just like I left after my brother’s death to put myself back together, I am just in a process of being remade.  It is just as painful, only in a different way.  I came out better before and I will again.  Imagine if we could all get this inspired without going through brain surgery to get there!

Monkey Pain

It is amazing what the human body can tolerate.  I am no doctor, or anyone of high reputation, but I have experienced pain from tooth pulling to labor.  I have experienced pain inflicted on me by other people, accidental pain, but all of that seems quite trivial compared to what I deal with now.

I remember when the headaches began.  They were very short, but it was like getting hit by a steel pipe.  (Yes, I know how that feels.)  Then they began to get longer and more intense.  Eventually I was told I was crazy, but we found out my brain herniated out of my skull.  The pain was real.

Then it got worse.

And worse.

It got to a point where the pain radiating from the back of my head overtook all of my senses.  I saw the pain, I heard the pain, I smelled the pain.  Never have I been so consumed by any part of my body, but all that mattered was the pain.  I laid on my sister’s couch for a while in pain, then I got surgery.  Magnificent pain.  After they took me off of the heavier meds, I had hours to think about the pain because the medication did very little for the headache.  It was more for the muscles that were cut through and the holes in my head from the vise.

It hurt to chew and swallow.  Life hurt a lot.

Three years later and that familiar explosion is again taking over my mind and dulling my other senses.  It is hard to make out what someone is saying over the pain.  Or to put the ideas together through the pain.  Just try to tell me important information during the pain.  An eggplant would listen better.

The real truth is, when I smile and nod, I have a very loose understanding of what is happening and my brain is working overtime to keep me faking it.  I hate having to fake it.  So why do it?  Simply because most people have not experienced a pain that makes neurosurgery sound like a great idea.  People say they have had a headache too.  I want to hit them in the base of the skull with a bat (yes, I have been “battered”) while they least expect it, then have them immediately follow a set of instructions I mumbled.

Not really.  I wouldn’t wish this pain on anyone.  I spend a lot of my time raising money for research because I want this to end.  I want to save other’s the trouble and maybe it would help spur research in other rare conditions.

Still, I wish people could grasp the severity of pain caused by these headaches  This is a headache that can last for months before peaking.  It is not a back injury (which, been there, they are awful too) and it does not respond to pain medications unless they are strong enough to knock me out.  That is not how I want to spend my life though.  When my neurologist brought up pain management, I declined after telling him how they injected my C3 and C4 facets even though the pain is up higher AT THE BRAINSTEM!  He seemed to understand.  I told him I don’t want to be put on medication after medication trying to find a solution to a problem that has yet to be solved.  Instead, we focus on memory and these seizures, that are somehow related to these headaches.

I am a medical mystery and I am glad that my neurologist acknowledges this instead of trying to patch me up.  The more I do therapies and exercise, the worse the headaches, the memory, and the symptoms become.  This is what people hate about the process; going through it.  There is no other way to find out what is wrong.  I must experience the stuff.

Please remember that if someone says they have a headache, you are in no place to judge what it feels like or its severity.  Smiles hide pain, they do not diminish it.  Don’t be the person that ruins someone’s day or makes them question the validity of their own feelings and body.  Don’t be the person who suddenly got a PhD and offers your mom’s home remedies.  Don’t be the person who keeps talking to someone after they just told you they have a headache.  Don’t be part of the problem.

Feel free to validate their feelings and pain.  Go ahead and offer to do something to help them out.  Nothing wrong with texting them later to see how they are doing.

Now, I am going to go be in pain and not typing.  Good Day!

Monkey Waxing Wistfully

When we are little we are all taught that though we share many similarities, each person is unique.  It is these unique qualities that make us all special.  We each have a mix of physical, mental, emotional, and intellectual differences that help each of us have a unique personality.  It is what distinguishes from others who may be similar, whatever “it” is.

Many of us work our whole lives developing the spark of talent that became apparent at some point.  Some of us never really planned to do much with the gift except enjoy it and work professionally in another area that we also happen to be proficient in.  We work, go home and have fun, and live.

I remember being entrenched in this lifestyle and loving it.  Even though I went to school for vocal performance, the ultimate goal was to become a music therapist.  I never intended on making performance my lifestyle, although I did a lot of performing because I needed experience to excel in a music degree.  Excel I did.  I worked tirelessly on arias and ear training and piano and guitar and theory and all of the wonderful work that comes with music.  So, while I had a steady job, I was able to perform both at school and on some nice Vegas stages.

I remember being upset at how the surgery was going to set me back at least a year academically.  Then the memory problems worsened and I have no choice which information gets wiped when I have a seizure.  Three years later I sit here and wonder what my life can become.  I have become too unique.  The doctors are wondering what is happening inside of this skull.

Right now being unique doesn’t feel good like it used to.  It was nice to be the only person at the BBQ who could sing an aria acapella.  It was nice to have the best shortbread cookies.  It was great having the black sports car.

Now I feel out of place.  I am surrounded by people who have no idea what I am dealing with.  It isn’t something that is easily explained to most people. Only a certain number of us (apparently) exceed the 99th percentile for functional intelligence.  How do I condense 3 years of medical progression into bite size pieces that people don’t compare to “losing their keys”?  The easiest is to say amnesia, but a lot of people then think that I can’t remember my childhood.  I can say a KIND of amnesia, again, most people aren’t even aware that there is note than one kind of amnesia.  If I say anterograde amnesia, they are not able to break down the word and understand it.

So, what can I do in this situation?  I am actually tired of explaining myself to people because why should I even have to?!  I have been explaining it to the same people for too long for them to keep asking me how I am feeling.  I feel terrible, just like every other day.  I am leaving my house because I have to get out but I am tired of the people.  I would rather go visit anything else.  A tree.  A statue.  A rock.

While people are busy assaulting my sensibilities, I am dealing with many doctors who are all pointing to my brain.  A neurologist who is determined to figure out why I am so special since there is no history in my family and this has been such a long deterioration that is speeding up.  A speech therapist that made a desk of sticky notes and is also concerned that my brain is weakening the nerves in my throat.  That could be the reason food is going up the back of my nose.  The dangerous part of this is that if my windpipe gets affected it presents a choking hazard.

You know what I got out of all this?  I may permanently lose my ability to sing.   I have felt it getting weak.  That is why I haven’t been back to the studio to record.  I am missing my voice.  In the bigger scheme of things, this is actually quite small (until you get to the mental/emotional self) and doesn’t matter.  We are doing PT/OT to help make life a little easier.  It won’t fix anything, but it helps keep me mobile and that is very important.  Must stimulate the nerves and the muscles they control.  I am in therapy to deal with the big changes happening to me and some past stuff.  I changed to a healthier eating plan, I do my home exercises.

No amount of my own labor can bring my voice back.  It is a pain that no amount of lyrical circumlocution can conjure a feeling for.  It isn’t like when my brother died and an extension of myself was gone.  Or like when I realized things were just wrong and life was NOT going back to normal; I felt like my place in society had changed from ‘contributor’ to ‘receiver’ and I felt lost in the world.  An integral piece of my anatomy used to play my instrument is not functioning properly.  I am sad in a way that I am not sure I ever have been.

When I got my tonsils out, it took 5 months to be able to sing again.  I gained a few notes on both ends of my range and I was thrilled to be able to use my pipes.  However, something is going on in my brain and this is just a symptom of something.  I don’t know if this will be it, or if they will unlock the secrets of my brains and get it back.

As much as it hurts, I realize that I may or may not lose my ability to sing.  I am prepared to deal with either of these outcomes because we tried.  I am trying.  If any loss leads to better care for patients in the future, then it is worth losing a voice.  I will make myself heard.  It may no longer be melodious, but it will get the attention of people who have the opportunity to get me where I need to go.  I love singing, but not as much as I love people.  I will gladly lay down a shield and pick up a sword.  This is my training ground.

I hold on to the chance that my voice will go back to normal, but if it doesn’t, then I will grow into what I am supposed to do next.  I can still enjoy music from other people.  I no longer want to hold on to pieces of me that can change or grow.  I will be pouty about singing for a while.  I will look pathetic as I lip sync to songs I once belted out.  I’m going to get it worked out and move forward into my next talent or ability.

If you are “losing yourself” it is ok to feel sad and it is natural to mourn any type of loss.  However, I encourage you to take the frightening steps forward that it takes to find new parts of yourself.  It might take time.  Trying uncomfortable situations.  We have not become so unique that we don’t fit in anywhere.  It just feels that way.  That is an appropriate feeling because some of us are going through some weird stuff.  It’s ok to spend time figuring it out or talking to someone and letting it out.  It’s funny because when I began typing this I was in such a horrible mood, but as I put it into perspective and think about how I can use this to get my message for patient rights out!

Yes, I am a victim of brain dysfunction.  No, I will not allow this to become a part of my identity.  I am a warrior, specifically of breakfast.   I encourage anyone going through rough times to look for positives.  Yes, I have been evicted, arrested, lights turned off, fired, and all other life situations.  I have experienced life and this was the first time I felt like I couldn’t fight because it is my body.  I will just work on my body and in the mean time, get the word out that brain injuries are real and people can seem completely normal and be having a seizure.  Life is weird ya’l!!

 

Monkey Health

So, I have been to the therapist, and it is just as tiring as I thought it would be.  I am doing my best at everything though with the hopes that hard work will pay off and something won’t hurt in the future.

There is a neck exercise where I have to turn my head while nodding.  It seems really easy, but it induces a heavier headache.  Sometimes I can feel my neck bones sliding on top of each other and getting caught.  It was better this last time I did it that it was the first time, so there is hope.

I feel like somewhere people forgot they they are really the gatekeepers of their own health.  Of course things happen, I didn’t ask that guy to hit the car I was in, but it is because I have been a relentless patient who followed orders and showed what didn’t work so I could get closer to where I needed to be.  Every day I have about 10 exercises/stretches to do and it takes about 40 minutes each time, and I am supposed to do them 2-3 times a day.  Of course it hurts and I don’t want to do it and I wish I could cheat, but I want answers, so if we can rule out skeletomuscular issues, then we really have nothing but sassy nerves left.

Plus I am an odd case, so they really have to cover everything because of my age, rehabilitation is the biggest desire.  People my age are settling into their careers and lives not filling out medical appeals for memory meds.  I think my age is the only reason that I have not gotten disability.  As I wait for my letter, I wonder how weird things are going to get.   I hope that it comes soon, but if it doesn’t tonight then that gives us time to get through this treatment period and see if there is any improvement in the seizures and the memory.

Luckily I just saw my psychiatrist last week and I have two weeks off with my psychologist  and I and doing speech therapy once every other week, so on the weeks that I don’t have music therapy.  But that is still about four appointments per week and I will need to schedule followups with several doctors next year, but I have to wait until December or January to make those appointments.

Until then, I will be doing these therapies in the home and at the office and as many times as I need to so I can see if they make a difference.  That is the most important thing, is there positive change.  The other thing to remember it that responding well to physical therapy is only “effective” if it takes care of the electrical feeling issues and neuro rehab only if it helps memory enough to be effective at remembering everyday things.  When I could drive, I always forgot to put gas in the truck.  Now I just forget other stuff, like the day of the week or how to speak properly.

We all love to think that we are the special lil people our moms told us we were, and we are!  Some of us are just even more special because instead of getting a broken leg or diabetes, we get something that most doctors know nothing about and half the ones that do are afraid of us.  All they see is “LIABILITY” so they are instantly busy or referring us to anyone else who’ll have us.

I did not ask to be someone’s liability.  I did not choose to have neurosurgery because I thought it was a good way to spend a morning.  I did not choose to lose my memory.  I did not choose _______________. Go ahead and fill in that blank with something you didn’t choose to be or do.

I chose to continue walking forward when the doctors didn’t believe me, when the treatments were painful, when the answer never appeared, I CHOSE to keep going.  How I do it works for me and my family and that is the message I hope to get out there.  You are part of the process and you have to chose the medical and personal routes that work for you and your family.  People may not agree with every decision. If they are in your support group, hear them out, they may have a point you haven’t considered, but stand firm in your choices because that keeps you accountable to yourself and your doctor.   When you choose to do something because your friend told you it was ok when the doctor clearly said no, YOU  are the responsible one.  Not your peer pressuring friend, or the doctor you think should have explained the consequences of this particular action in detail because if you had known your femur would be sticking out of your backside you wouldn’t have done it.

Be responsible.  Take the meds if that is what you and your doctor agreed to.  Go for those daily walks.  Every little choice adds up to either a favorable or unfavorable consequence.  I am making sure I go walking every day.  Even though it is cold.  Now it is a great warmup for stretching my hamstrings.  Stretching cold should be a crime, but that is just my opinion.

If you are part of the support group, consider going on the walks and just going through some of the changes with your friend for a while.  It feels good to be encouraged and to know that someone out there is suffering these changes just to help.  The act of love is immeasurably beautiful and the memories last a lifetime (especially if you blog them).

Thoughts Of A Music Monkey

Really, this entire journey has been fraught with surprises and unexpected twists and turns.  In the very beginning, I was nervous but I had faith that I would come out of surgery with no complications.  I was told that while it took longer than expected, part of that was because the holes where they screwed a vice onto my head wouldn’t stop bleeding so they ended up having to staple them and I took a while to wake up from the anesthesia.

I tried as much as I could to follow doctor orders, go to appointments, physical therapy, and after 6 months my neurosurgeon was concerned about my memory and referred me to the brain center in town.

As time has “progressed” around me, everything has just been a blur.  In my head all I see is a timelapse video of me standing still as the world whooshes around me, but my body and mind are deteriorating at the speed of everything around me.  Here I am in 2016 in my head living in 2018 and while it seems I do so little, I feel like my mind is running all day to catch up to a world that is constantly changing and I am changing but I don’t really understand what is happening to me.  We don’t know why this is happening.

The important thing is that I keep discovering things about myself, good and bad.  I wrote a book!  Who would have ever thought.  It’s like my blog on steroids.  I didn’t think that was anything I would ever do.  I plan to keep my people —I was probably about to lay some earth shattering lines of wisdom but I seem to have blanked out.

That is the problem.

I assume the point I was going toward is that life is unexpected and while I don’t remember much anymore, I am thankful that I have found that I am adept at translating my experience into written words that see to get more flowery as time goes on.  While I feel out of place in time and in the wrong body, I have not stopped.  I am trying to pull the pieces of me that are left together, and gather new pieces that I have found and form a new Michelle.

This Michelle is learning how to deal with mental inconsistencies so that she can stand up and speak out for those who have no voice.  This Michelle is learning to deal with the medical system while batting memory loss, constant headache and nausea, and a trick knee.  This Michelle is learning what to ask for at doctor appointments and ALWAYS having a rational reason for getting things accomplished.  This Michelle puts everything in her phone or it isn’t happening.

The best part is, most of the time, I do not remember that I have memory loss, so I have to really try to have someone with me to remind me to put it in the phone.  It is my battle to fight and I am on it.

I wish I could say that I am consistently positive, but there are days that I really want to give up and stop the fight.  The question that stops me is, “what will I do then?”  If I give up and I don’t happen to get disability, what do I do then?  However, right now I am telling myself that everytime we clear a battlefield we have made room for others to come.  If I cannot be “fixed” then I will use the energy and resources I have to find a cure for Chiari Malformation and to help patients who receive head or spine injuries get promptly and thoroughly examined and imaged and followed up on in a year to help catch decline before it is too late to halt.  I assume that means that major changes would have to take place, however, I have nothing to lose if my memory is gone, so I will fight my way to Capitol Hill if that is what it takes.

I will endure the setbacks, the pain, the frustration, and everything that frustrates me in order to lay the foundation for better healthcare.  I have recently discovered that I am losing control of my left vocal fold.  I cannot sing very well anymore.  My most precious gift is withering away.  I will gladly give it if it means that I will help someone keep their ability to draw or dance.  I refuse to let my suffering be in vain.  I believe I was born with purpose, I have simply been collecting the tools I need to carry out my mission.

What’s your purpose?

Monkey In Waiting

There are people who have known me for a long time (over five years) and some who have met me after my decompression and a lot of them ask me why I don’t have a definitive diagnosis concerning my memory.  Unfortunately, it isn’t as easy as spotting a heart problem or a mass on the lungs.  For someone my age to have a memory issue in the first place is highly unusual except that I have been in a car accident and sustained a brain injury.

So people are like, is it the injury that makes you forget?  Well, it isn’t that simple.  My brain was out of its proper position for over a year and lots of little changes can take place during that time.  The surgery took care of the immediate problem which is having brain in the neck.  Part on my cerebellar tonsils were cauterized, who knows what we messed with!  Still, it was all done to help prevent future damage from the formation of a syrinx.

At some point during this situation, I began having seizures, and my neurologist suggested seizures as the missing blocks of time and instant forgetfulness point to excess electrical activity.  So, I see him, we order tests and images, and wait three months,  See him again, I am put on memory medication, some meds changed to help with nighttime seizures, and lots of therapies to see if we can get these nerves and seizures under control and if neuro rehabilitation is going to be useful.  The thing is, we now wait to see him again for four months while I go through these processes which will either give us answers or send us further down a path that will lead to Cleveland.  Even that is maybe a year off.  We have to assess the therapies, run more tests, and then if it required, put in a request for authorization to go to another city to a specialized clinic.

Meanwhile, I am in a lot of pain now that it is cold.  My head has been hurting more and I have been sleeping a lot.  I try not to feel bad about it because what can I do?  I know that these therapies are going to take a lot out of me, and I hope that I can get through them gracefully.  I want to do everything I can to get better and if this shows me that it isn’t helping, then I am prepared to go as far as I have to go.

So, this is a slow process because things are usually done in three month increments and seeing a top neurologist frustrated with my case is encouraging because I think he is so curious that he won’t stop until he discovers why I have the memory loss and if anything can be done.  He already told me that the memories that are gone are gone for good.  I think we should live in the present because it isn’t promised that we will even remember the good times we have.  I don’t forget just bad stuff, I forget all of the things.  I forget people.  We are both frustrated and I know my poor family is.  They have to live with a once very competent woman who describes things with vague words and hand gestures now.  It is just a hard situation.  Even trying to figure out if I am capable of living on my own without hurting myself.  I think that I can but with someone to check on me here and there.  Without disability, that is just a thought right now.  I am actually thankful that I have the opportunity to stay with my parents because I have developed a special relationship with them that I think can only be borne out of a difficult situation like ours.

This week, I have my first physical and occupational therapy visit.  I don’t expect it to be horrible, but I have a lot that needs to be worked on.  I need to be able to write, do dishes, wash my hair, do my own pedicures.  I need to be able to stand in heels, lift boxes, perform, and they have to figure out what is happening with my voice.  The left side of my throat seems to be lazy and that is problematic.  I don’t see the speech therapist for two weeks!  I have been waiting for six months actually because of paperwork mix ups and then scheduling.  I am scheduled out to March.  We will see how they schedule out PT and OT.  I am hoping not more than two days a week, but they like that 3 days a week stuff.

All of this has to happen for several months, then my neurologist will review all of the data and see where or whether progress was made in different areas and from there we determine the next step either treatment OR testing!  They will give me another three month period to see if the treatment works or what the test results say and this is how it always works.  It is not some easy process where the doctor has found a lump on my brain and we know where the problem is coming from.  So far my brain looks normal, that is even more disturbing because it gives no clues to the seizures or the memory loss or the pain or the nausea.

So, if you are new to this process, I pray that you get everything diagnosed quickly, but don’t be surprised when you discover that this tends to be a process that can take years to get answers or discover that there are no answers known to medical science at this point, but they will keep an eye on research.

Don’t be shocked if you are a medical oddity.  You will have horrible days of wanting to strangle every Ivy League doctor out there, but we are the door openers.  We are the ones who keep pushing so that the research is done, so that the answers are found.  So that someone else won’t have to go through what we are going through.

We want memory patients to have access to the few memory meds available if their doctor thinks that is it in the patient’s best interest.  Insurance companies shouldn’t be overriding the decision of someone who is actually with the patient if that doctor has a clean record.

We want neuropathy patients to be heard.  It doesn’t matter if it isn’t on the images, scans, or recordings, THE PAIN IS REAL!  I have been in therapy, and I had a neuropsychologist recommend that I go to therapy.  He didn’t even read my file.  He figured I was just a hypochondriac who lost her keys occasionally and had these headaches that sound like horror fantasy.  I told the neurologist that I was ready to kill that man and please don’t make me see him again.  He wouldn’t even do the exam.  Pissed the neuro off.  Some doctors see one thing in your file and focus on that and then delay your treatment because someone has to now come clean up after them and PROVE them wrong.  Thanks, neuropsych.

If you are on the support team of someone who is on or starting a medical journey, just know that it IS FRUSTRATING and that is normal for things to take forever and you are truly blessed when things go quickly.  If they go slowly, it will be hard, but try to make the most of every day and make the effort to have more good days than bad.  You may be in for a long ride.

 

Monkey Thanks: 30

Honestly y’all, I swear I wrote and hit publish for this, but I see no sign of it anywhere, so I am a day late.  The worst part is, while I seem to remember writing it, I have no idea who I would have written it about because no one is coming to mind, which is even worse because I need to write about somebody, right?  I know so many people yet it is so hard to pick on outany person because one is not popping into my head.

So, I will just take the time and space to reiterate how thankful I am that I have such wonderful people in my life who have each somehow made a difference in my life.  Especially the people who have walked this road with me for the past three years.  As I write this, on December 1st, I am thankful that I made it through my surgery even though some days I think I feel different.  I know the feeling of crushing depression and at time I am still put in a frame of mind that is completely negative and destructive.

Having so much love around my in my darkest times was so encouraging and  made it worth it to go through difficult tests and procedures to try to see what is going on.  I don’t know that I can say more without just repeating myself over and over.  Thank you for being thankful with me!

Holiday Monkey

This time of year is when we tend to reflect on how thankful we are for things that we have, even though we should be doing that all year, right?  I am going into the holiday season with therapies and doctor appointments and lawyers and all kinds of wildness!

I must admit, I have no idea how I’m going to handle the rest of the holiday season.  I made it through Halloween, which I have never been fond of.  Like, just go buy candy.  anyway, once that was over, all of the Christmas stuff came out with some turkey stuff here and there!  However, for me there is is very special day stuck off in there.  The day celebrating the birth of my wonderful daughter.  I actually made it through her Sweet 16 party AND made it to church the next day!  Seriously, I had so much fun!

Now, we have a play that everyone in my family is somehow involved in, then right after that we have to prepare for the church’s Thanksgiving dinner which usually has us there from like 9am to 6pm.  It is a great way for people who don’t have family, or only have a couple of people, or can’t cook, or whatever can come together and eat and sing and fellowship.  We don’t turn people away.  We take food to those who can’t drive or are sick or can’t leave for whatever reason.  We take food out to the homeless.  We feed as many people as we can and it is always such a success.  We found that people preferred this to getting a basket of food they have to cook and may not have access to everything they need.  Plus the more, the merrier!

After turkey day is the worst, three weeks of Christmas parties, luncheons, dinners, and secret santas.  I usually hide out during this time of year because it is just too much.  because just when you think it is over, there is the Christmas program at church which takes weeks of practice in between all of the other social gatherings.  Did I mention that everyone is having babies too?  Baby showers are my kryptonite.  At least at mine we went swimming, but I also only invited five people.  Also, why are we having baby showers on baby number two, three, or four?  Look at me ranting!  That is why I don’t do social engagements.  I often feel like they are over prepared, pretentious events where I have to pretend to have a good time.  I can’t lie that much, so I just don’t go.

Finally, when Christmas is over, there is a whole week of quiet as everyone minds their own business, then it is New Year’s Eve.  I must say, the ONE time of year I want to go to an actual party, I am never invited.  I haven’t been to one in many, many years.  The last time I kissed someone one New Year’s Eve was twenty two years ago.  I feel like, I want to bring in the year with someone I really like, maybe one day.   Until then, I just kiss my phone and celebrate with a good night’s sleep!

The Monkey Boots

So, it is FINALLY FALL!!!  BOOT SEASON!  Plus Las Vegas has made it out of the 100 degree range until next year (PLEASE!) So I can finally layer my clothes and wear all the good stuff.

With my Autumnal Joy comes the knowledge that the cooler temperatures bring stiff joints and I don’t know if it gets worse every year, but my back, hips, knees, ankles, and feet are NOT about this weather shift.  I am under forty and my body feels like it has endured centuries of violent, nomadic living.  I like that it can do cool stuff like walk and write, but I don’t like when it stops working or locks up.

Bargain Bin Body.  Still, keeping warm is the idea so fleece leggings.  ONLY FLEECE!  I need to know that my knees are going to be warm because they will probably be exposed.  Knee socks are the socks for the everyday outfit.  Then boots.

Up top, bra, tank top and then a thigh to knee length flowy shirt.  Matching sweater, usually asymmetrically cut, and a scarf of some type.  It could be decorative or for warmth, just depends on the conditions.

November brings with it speech therapy, occupational therapy, and physical therapy (ST, OT, PT) along with my daughter’s birthday, Thanksgiving, and goodness only knows what else.  This is all on top of the regular appointments and things that we have to do.  I am interested to see how my brain deals with this much stimulation.

I will spend the next few months seeing how much I can improve with therapies and I think that is awesome.  It is a little more difficult because I can not drive myself, but hopefully I can enjoy the extra car time I have with my mom.  She gives up so much and her whole schedule is about to change to suit my medical schedule.  (No, she doesn’t read this so I am not trying to get brownie points!!)

With all of this is coming a change in eating from the Mediterranean diet to a more Ketogenic style with low carbs.  I have slowly been making changes and it is a little easier than shocking my mind into thinking I am assaulting it’s sensibilities.  I have emotional eating issues, so I have to rationalize all of my food changes so that I don’t feel deprived.  Enough about those issues, tho.

Now, I am sure that everyone has their opinion on eating habits and patterns, but I am not here to debate that.  The real idea is that whatever choice you and your doctor decide on, you have to be prepared to make sacrifices and I am the first to admit that this advice much easier to GIVE than to TAKE.  The thing that keeps me hanging on and trying to be better is the health benefits I will achieve.  Life has more recently taught me that change can come quickly and either you go with it or fight and lose.

Just going along with it is so much easier….in the long run.  It is uncomfortable if you are like I am, preferring to be comfortable with nothing unexpected ever happening. So, basically unrealistic.

As I go into this month, I am hoping that it isn’t overwhelming and that I can share all of the awesome things I am up to!

The Passenger Monkey

I had a visit with the neurologist, and in another post I will get more in-depth about that visit, but know this, it was disappointing for everyone involved.  I just want to focus on one area of my disappointment and that is that I am still not allowed to drive.  For at least another four months.

I know this probably sounds like a minor inconvenience and I suppose in most ways it is.  I often am in a vehicle with another capable driver, so it’s not like THAT much is different…except I am now permanently a passenger.  I have a lot of appointments and now someone has to be available to take me.  Since I haven’t had my disability hearing, I have no income and my family takes care of me, so I really hate adding another thing to their plate.  Luckily, my family is flexible and understanding that I am doing everything I can to help.

When I want to get something in the middle of the night, I just can’t.  I am not even allowed to walk to the store by myself.  I find it to be an annoying restriction but one that is important for keeping us all safe.  Still, I don’t like people taking things from me that I enjoy.

This is where my biggest issue is.  I LOVE to drive.  I have been driving since February 24, 1997 when I got my permit.  Six months later I had my licence.  Then my car.  Freedom!  I love the freeways!  I would take the long way just to feel the breeze and see the mountains and the valley.  I have driven across the country through snow, fog, rain, hail, dust, ice, heat.  I have had to be towed from the middle of nowhere and wait for a rim to be delivered to nowhere while I ate bologna sandwiches with mechanics in the dead of winter.  I went off-roading at Death Valley National Park.  I drove along the California coastline.  These are all precious memories that I thought would always be added to.  For now, I will have to close this chest and open one that allows for a different type of adventure.

Still I am going to miss being the captain of my ship.  This is one of the issues that seems really small, but something I have done for over half of my life has been taken from me. I have been stripped of a portion of independence that I loved dearly.  I had one last road trip planned, but I will have to change that to some other type of getaway.

Why not just let someone else drive?  Simple, I enjoy solo travel.  I like being able to do what I want without having to listen to another person.  I enjoy the sound of the wind over snoring or conversation.  I DO NOT like sharing hotel accommodations and I have no problem spending lavishly on myself (within a set budget for a vacation) and I need ME time.  I do not like keeping up with other people.  I know this all sounds horrible, but trust me, ALL of my vacations have been awesome because I got to do what I wanted.

Now, I probably won’t be able to travel alone as my family would never approve of that.  I can enjoy a “trip” with another person.  Where we plan stuff to do and have an itinerary, but that is not what I like.  I like to stay in my hotel room and relax.  Or go to the pool and relax.  Or have lunch and relax.  The key to relaxing (in MY LIFE) is to not involve other people.  They talk.  They want to split bills.  They want to share a room.  Just thinking about it is less than pleasurable.

On the more practical side, I can’t even drive my daughter to school.  I can’t drive myself to church, so someone has to come home and pick me up.  If I forgot something at the store, I can’t just run and get it.

Right now it is still a shock, but I know it will just take some time before it becomes my new normal.  I think what most people fail to see is that I just feel like I am losing little parts of my past normalcy that I desperately try to cling to.  I have to mourn every loss.  Every little thing that I cannot do anymore has to have a proper resolution so that I am not hanging onto it.  Letting go allows me to embrace something new.

Never give up on the hope when it is dark and things seem to be going awry.  I can promise you that if you push through that you will discover strengths and talents that you never knew you had in you.  That is NOT to say that things will get easier, but your wisdom and tolerance will increase and eventually you move with the process…even when you aren’t thrilled with it.

Family and support, be kind because you may not know how it feels to have tiny portions of yourself taken away or changed and unfamiliar.  It can make life a frightening experience and we need to know that we are in a good place with good people around us who love us and will give us time and understanding.

Thank you for those who stick with us and don’t question our moments, they just live in them with us.  Ya’ll the real MVPs.

The Token Monkey

Accepting change has always been hard for me.  I want to go with the flow…as long as it is going the way I am used to.  Obviously, that is a problem.  Life just doesn’t work that way.  The worst of it is, just as soon as I think I have gotten to a place where I can accept change, here comes some crazy thing out of left field out of my doctor’s mouth.  *BAM* Regression.

I thought the brain pain would be the end of me until the memory thing became clear.  Then I thought we would figure that out and it led to probable seizures.  According to Google, I am prolly headed down the road to some type of cancer.  Seriously, though, I find that each new situation draws out a different fear.  I have feared for my life.  I have feared for my mind and mental faculties.  I fear now that I will be limited by the actions of my body when under control of my misfiring brain.

Losing parts and days of memory has caused these fears to multiply because I never really know what I don’t remember.  I often wonder if I am rediscovering the same fear over and over until it sticks.  Or if whatever is going on is new or has it been this way.

I am currently having a conversation with my sister as I type this about whether or not I stare into space, do I do it often, has it been going on for a while, and is this the first time I have realized it wasn’t normal.  She has told me that I “discover” things about myself over and over and she just goes with it and doesn’t tell me that I have told her before.  I appreciate that she doesn’t assist in making me feel crazy.

Still, the worst part of my situation is that I feel so alone except for the few people who really see what I am going through.  I have stopped trying to explain myself to most people because most people do not understand.  I stopped praying for it to get better because I don’t want to be disappointed if it doesn’t.  I wonder why I bother staying in church when I feel so fake around and disconnected from the people I attend with.  As a congregant I am there to be encouraged.  As a minister, I am there to encourage.  As a human, I am there because I don’t have much positive life experience outside of church; it keeps me out of jail.  What kind of minister am I?  One who knows and understands most of my flaws.

I am prideful, one of the deadly sins.  I enjoy being the best or the brightest or the best looking, but I have been knocked from my self-made pedestals.  I realize I am only human, and not even in the top 10%.  The good out of that is that it is easier to help other people because I am not concerned about everyone seeing or hearing about me doing it.  Quite the opposite now.  It is almost like my penance for all those years striving to be recognized and seen and appreciated.  I want to say that I help people because God wants me to, but I feel more that I owe it to Him for what I have done to people and my own selfishness and arrogance.  I haven’t wanted to get to heaven in years, I just want out of life.  Until I am given my out, I shall serve others’ needs as I am able.

It is humbling to walk through the experience of death and mourning with a family.  I now realize that no matter the race or finances or whatever, grief is grief.  I feel like I know grief so well.  We have spent many nights crying over the broken and lost pieces of my life.  We have joined other families in the ER or ICU.  We have sat with many over a pot of coffee.  When I have grieved enough for them, I return home and grieve the loss of my life and identity.

I used to be so many things that I thought were awesome: awesome employee, great student, talented cook, jewelry designer and creator, landscaper, and definitely a nature loving hiker.  Now I am an unemployed professional patient and I can barely remember the month.  I am the type of person I always feared being; someone who is not a productive member of society.

Medical conditions have made it all but impossible to exercise so I can feel good about my health and body.  Nothing like feeling like a sack of potatoes every time I leave the house.  I can be a nicely made up sack, but shapeless nonetheless.  My self-image is destroyed.  I hate being in this body that doesn’t work right, but at least it still works, so it still gets points.  In the end, it is probably for the best.  I used my looks to use people up and get what I want from them.

Every day that I have to see another sunrise is a day I wish didn’t exist, and I wish each sunset was my last.  I don’t know what other people get from life.  I am looking at going into middle age alone and sick, dreading each day along the way.

If this seems depressing, it is because this is what my depression is like.  It is a struggle that I fight all day every day.  Usually, I choose to do things that will take my mind off of my problems.  So, I spend a fair amount of time at church, I try to get out of the house everyday, and I have indoor activities that keep me busy so that I am not drawn into the spiral that is deep depression.  I go to dance class so I get regular exercise since I can’t drive to the gym or go out hiking right now.

They are called coping mechanisms because there isn’t always a way to “fix” what is wrong.  I can’t instantly heal my body, but I can make sure that I am stretching and exercising it so that I am being proactive about my health.  I can’t do what I want to do, but I am doing something.  I am doing as much as I can to tread water and stay afloat until we figure out what my body is up to.

THIS is the “strength” everyone seems to laud as I go through my journey.  They are so amazed that I haven’t drowned that they can’t see that my nose is barely above water and I am ready to give up.  I am tired, not some hero. I am a human trying my best to keep it together because it feels like I am shattering into pieces.  Putting on a fake smile is not me overcoming something, it’s just that I haven’t broken under the weight of my burdens…yet.  Even I wonder how long I can pull this off for before I need an increase in my meds or have a full-on breakdown.  I hope that I can make it to my diagnosis.  Maybe even my disability hearing.  So far, both have taken over 2 years, so I am not holding my breath.

Should everything fall through and I am stuck in a horrible life, I would at least prefer for my decline to be around people I barely know.  I could never bear for those who once (wrongly) thought I was so courageous to see me lose myself in whatever I am becoming.

If you are dealing with feelings that seem larger than life itself, I encourage you to talk to someone in your support system and that includes family, friends, and your medical professionals.  If you feel like this is it and you can’t take it anymore, please call the National Suicide Prevention Hotline at 1-800-273-8255 because your life is worth living, even if it is to help others realize that their lives are worth living.  I have never needed this number, but I keep it because I don’t know if I will need someone to remind me that I have love in my heart and that is quite the redeeming quality in humanity.

If you are a caretaker or friend of someone who you think may be depressed and holding it in, become a bigger ear and a smaller mouth because they may need someone to talk to who isn’t offering to “fix” a problem or telling then how they can be better.  Sometimes all people need is to be heard so that they can be reminded that they are loved and can love.  The other edge of this sword is that sometimes a decision will be made and you (the friend) will be the one grieving and hurting because there are times minds are made up and all you can do is love until the end.

Life isn’t as simple as picking myself back up, especially when my arms are weak and a knee is missing cartilage.

This. Is. Depression.

Monkey Resigned To Being Determined

I have never seen myself as a strong person.  At times I have been determined and at other times I have been resigned.  I can see myself in either position at any given point in my life.  It has been the driver of the ups and downs in my life.

As a child, I was determined to do whatever it took to be able to take care of myself.  I learned how to follow orders, how to be a sycophant, how to be cruel, how to look innocent, and how to plan the long game.  I breezed through my teen years, high on everything, with great grades and two jobs.  Life was awesome.  I had a goal and I was reaching it while having the time of my life.

I had a steady job, was getting ready to go back to finish my associates in English, and looking to purchase my first house.  Then, one morning, my brother was murdered.  That day I became resigned to living.  I wasn’t sure how to navigate the world without him; he had always been there since I was born.  It has almost been 20 years, and it took the first 10 before I started getting it back together.

I was working and shared an apartment with my sister, who raised my daughter (I am not even gonna lie and say she watched or babysat) while I was working and trying to get back to getting a career.  I lost my job, but that made me more determined to get a business license and get myself back together.

Learned how to make jewelry and after 18 months of searching, finally found steady work with great benefits.  They paid for me to go back to school.  I went for vocal performance, and I loved working and learning and building myself to achieve my bachelor’s in Music Therapy after two more semesters.

I had to get the brain surgery and the neurosurgeon worried about me singing opera again, but we were hopeful the surgery would heal well with few complications and I could get finished with school and go to Louisville.  So I followed the doctors orders, I eventually went to excruciating physical therapy.  I ate a high protein diet, I went for a little walk everyday.  I read and wrote and did puzzles and games.

I don’t know when I realized that nothing was improving.  At 6 months the neurosurgeon was concerned enough about my memory loss to send me to the brain center out here, but it would take over a year before I actually made it.

Life, kept happening, everyday, all of the time.  The weird thing was that I didn’t remember it happening and holidays and birthdays popped up out of nowhere but the passed with no memory.  I ended up seeing a neuropsychologist and he gave me his opinion; I am above intelligence, I have some trouble processing data, my memory is crap.

When I read the results of the test, I cried.  While indicating something may be wrong, I was given a set of recommendations I had to spend a year filling to get to the brain center.  I knew when I read the results that I was going to be put through the dog and pony show.  Slowly, I made it to over 17 doctors, at least 6 blood draws for specific testing, SO MANY MRIs, 2 EEG sessions, three sessions of conductive nerve testing (medical electrocution, though it isn’t THAT bad…the first time), an endometrial biopsy, so many urine tests, meds meds meds, over 200 cases of ginger ale, and who knows what else.  I became resigned to being a professional patient.

When I finally made it to the brain center, I was informed that I was not an average patient and was not presenting with symptoms that really went along with the Alzheimer’s or Parkinson’s so maybe this wasn’t the best place for me to get care.  This was THEIR neurologist, and the neuropsychologist agreed.  I lost even my resignation that day.  I was ready to just give up and exist, whatever that meant.  I had a followup with the neurologist but I didn’t even want to go.  Then I was told I would have a different doctor and I couldn’t see myself explaining all this to another doctor.

I went to this appointment because it was important to my family to try everything.  Turns out I got the head of the clinic.  The top guy.  The guy who listened intently as I expressed my fears about being told I was just forgetful or him not believing me and I just asked where I could go for help.  This guy LISTENED to me, and then asked relevant questions that no one ever thought was important.  Then he talked to my mom and sister and got their input on what they thought was going on and how it looked to them.  He restored my determination because figuring out what was going on seemed just as important to him as it was to me.  He also had a lead to go on: Seizures.   Family history, brain out of position for over a year from car accident, large chunks of memory gone.

Left that visit feeling like my crops had been harvested, the animals fed, and the front lawn was freshly cut!  He is willing to go there with me and he believes what I am saying about my memory loss.  Ordered tests and therapies (I am in the process of scheduling all 3 of them). I am currently 28 days to my visit.  7 days until my MRI.  Praying we don’t order more tests.

Right now, I am slowing down a bit, but I am determined to find some answers.  Even if the answer is ‘unknown cause’, well that is still enough.  I hate to think I could get discouraged at this point, but here is the thing, I know that I can.  Just getting to this point has taken so long, but I wondered along a lot of the way.  I lost steam along the way.  I am blessed to have a family that carried me through those times so I wouldn’t give up.

The worst of it is, I don’t think that most people who know me really know the depths of depression that I spiraled into.  It has taken a year of therapy just to start to become OK with not working.  My parents carry my ENTIRE financial burden.  The people we know and are friends with don’t know how much they have sacrificed for me and my daughter.  My sister babied me for MONTHS after my surgery because my recovery was hard.  People don’t see the work she put into holding my cup up because it was too heavy for me.

Sunday at church, a lot of people pointed out my cane and were surprised.  Although they see me every week, they have taken no notice of my physical and neurological deterioration.  I try to keep my business private and the church is not entitled to my health status unless I am contagious.  A lot of the things people say to me really are thoughtless and damaging.  Not on purpose, but because everyone lives out different experiences and at times we try to relate but the connection is missed.

I say all of this to let you know that if you are blessed with a body that works, don’t question the body that does not.  Just say something kind and positive.  It could be a compliment on their hat, or a comment about odd weather, or ANYTHING but what you suspect is wrong with them.  They need people to keep pushing them in the area of determination and not being resigned to that girl who complains (after I ask her how she is doing and she gives me an honest response and it is one of her BAD days) all of the time.

If you are in the position of trying to stay determined but people are bringing you down, don’t be afraid to tell them that you need positivity.  Even in the bad things we can find some good in the situation or outcome if we look for it.  Try not to be mean, but if you are, don’t be ashamed to apologize.  We want to spread awareness but sometimes we just want to be left alone and we let loose on someone.  Apologize.  They probably had NO IDEA what you are going through.  With that apology, add in anything the two of you can do in the future to avoid conflict.  Educate them on dealing with chronic illness, chronic pain, and and other type of disabled person so that they CAN be encouraging and maybe give someone that push they need to stay or get determined.

If interacting is just going to be problematic, just say “good morning” and keep on going!

Sometimes you can just see that someone doesn’t feel like dealing with anything, even kindness and concern, as they DO NOT block pain.

Go forth and be loving!

Monkey Support System

I have such a wonderful family.  I always knew they were cool, but I have seen how every member of my family has sacrificed something to take care of me,  Many sacrifices are long term and continual.  Sometimes a really fun thing has to be skipped on my account, but they are champions for dealing with it the way they do.  I know a lot of people who “know someone who cares for another person” but most of these people don’t see the day to day dealings and frustrations that families face.

Thought I was trouble before?  I am no longer allowed to drive.  In the last 7 days I have had four doctor appointments, a visit to the ER for my daughter, an allergic reaction to medication, and two pharmacy visits.  That is all stuff that my FAMILY had to drive me to!  No one complained when I frantically ran around the house needing to get my daughter to the ER to close up a laceration from a stray burr on the oven, they knew I felt helpless because I couldn’t even help my own daughter because of my health.  My stepdad hung out in the waiting room while I sat with her letting her squeeze my hand.  We went home after two, and he had to be up in 6 hours for work.

I feel unworthy of such love for me and my child, but my family shows me constantly that our love as a family will rise to any occasion and meet it head-on.  While I feel like so many things have been taken away from me, I have been given enough support to cover every loss.  I count myself blessed to have such a team of people around me who keep me going and carry me when I am too worn down.

THIS is a Support System.  It isn’t just my family, I have friends I can call, associates, and complete strangers who are willing to assist me.  Yes, I am a grown woman with a teenager, and my parents take care of me and my daughter.  I used to hate it until all of my money ran out and I could no longer give them money, or pay my own phone bill, or buy socks.  I actually ask for these things now and it has made me a much more humble person.  They could have forced me to give up my own phone bill and get on their account, but they understood how it would hurt my pride and they bit the bullet.

By NO MEANS are we rich.  We know how to be frugal.  I know how to cook from scratch which can save a good amount of money.  We save money every way we can, and we still get to go to the movies and shop, so, it’s a balance.

So, this is what breaks my heart; people who go through chronic illness or chronic pain alone or with toxic people around.  This is something I see in some friends of mine and in groups on social media.  It is close to impossible to walk away from whatever situation I find myself in if I come down with a case of unexpected neurosurgery or incapacitating pain.

Some people get SSI or SSDI right off the bat, but many of us wait longer.  It has been over two years since I first filed.  I am waiting for a hearing date.  Meanwhile I am making no income.  So, I know there are others out there like me who find that the resources run dry.  I assume only a portion of them have the luxury of moving back home.  Some of the people I know who chose this option deal with family who almost feel obligated to let them stay but are not welcoming at all.  A few are acrimonious.

A few have spouses.  Some of those spouses try their best to understand and sympathize the issues associated with the chronic life.  However, some spouses are a stain on humanity and do not believe or tolerate the disability.  So, you have to live in the slim space of being sick without it bothering the person who finances your life and medicine.

There are some who have nowhere to go.  They lose everything in their life, they lose themselves in the pain, and life can take some weird or even dangerous turns at this point.  The streets are no place for anyone.

This all begs the question, “what do you do about it?”

I mull this over every time I go to the doctor and leave with no answers.  I consider it when I am in the MRI housing.  I ponder it when I am on the phone for three hours trying to find a referral that got stuck in Ohio and was not sent back to Las Vegas.  I marinate in it when I am in the ER and I see people there alone, while I always have one or two people with me,

I look at my church as an example in this area.  One of us from the Helps ministry will be there with you at the hospital.  Usually for as long as it takes.  Might have to sleep in ICU for five nights.  Might have to go to another state and care for someone.  You might have to go be there during the dying process.  you may have to feed someone who is injured or otherwise incapacitated.  There is this shared responsibility for the welfare of each other that I don’t know if it exists in other churches or other types of communities…but it should.

Las Vegas has a lot of people who come out without family and they need support in their lives.  When things happen to them, one of us will stay with them and someone else will help arrange for family to get here and get to the hospital.  If I  have to stay overnight with someone, there are shifts of people who bring me food or whatever I need.  It is beautiful to watch such a large response of love toward a single member of the church because we are all that important.  Everyone gets that treatment, even new members, and at times non-members.  People deserve kindness.

I challenge you to be more supportive of the people in your life that are going through something you don’t understand.  Most of the time all you can do is listen and bring them things, and often that is what they need.  They need to be heard and have their feelings (WHATEVER THEY ARE) validated so that they know that someone cares.  Sometimes that means helping them meet a need.  I know that no one wants to part with their money, but sometimes people need help with simple things like toilet paper because their meds cost went up.

The best part about a good support group is that EVERYONE is willing to give as much as they can when needed, even if everyone doesn’t have a lot of money.  Supporters give time, attention, encouragement, and friendship as well as any kind of financial help.  There are some people in my circle that are well off and all I can do is make them soup when they get sick.  I can’t throw money at the flu just like they can’t.  I will sit and listen.  Talk if conversated with and leave promptly because supporters also understand that people need rest to recover.

Supporters understand when you look like you survived a tornado and are forgiving of a short temper or a poorly thought-out comment.  This of course NEVER implies that one can treat supporters like servants or pests, rather, this is the occasional slip of tongue which is also apologized for.

The best part is that a good support system offers cheerleaders for every victory as well as a soft place to land after a loss.  A good support system is woven through love and experience and you can only be in a good support group if you are a good member.  Be the change you wish to see (Not sure who said this; could have been me, could have been Hammurabi).

Monkey Rambles

Nobody wants hear their doctor utter these words:

  • seizure
  • epilepsy
  • permanent memories lost/ not forming
  • we don’t know
  • we need more tests
  • no driving

As these words race through my head I feel such a range of emotions that I just shut down from the excitement.  I try to internalize my feelings so that I can study them before unleashing them upon the world.  The few pieces that I recall begin to make sense.  There was nothing I could have done or not done to stop the progression of what has been happening inside of my brain.  I wasn’t ‘forgetful’, the memories never even formed.  I was waking up feeling like I was in a fight or hit by a car because my body spent time tensed and convulsing.  I feel resentment toward those who downplayed my concerns, and I know that will turn into an issue.

Now, I have been living under these restrictions for a couple of weeks.  Waiting for my ambulatory EEG to be moved up.  I had a seizure while awake.  Everytime I think about it I just remember how scared I was to have no control over my body.  For a brief period of time my brain took over and I was an observer to what happens when the brain oversteps its boundaries.  I have been experiencing weird feelings, all on the left side of my body.  I sit wondering if one is going to turn into a seizure.  Will I be awake?  Will I be alone?  Will I get hurt?  Will I have the ability to know what to do afterward?

These are the thoughts that I have as I wait for my EEG so I can have some sort of answer as to what is happening and then how do we treat it?  I have faith that we will have some answers in the future, but I have my fears that my brain will discharge before I am hooked up.  There are very few medical things I fear.  The others are catastrophic occipital headache, vomiting/headache cycle, and needles in my neck.  Just thinking about this is making my BP rise.

Anywho, I hope the EEG tells us what is going on while I am awake and asleep.  If you are new to the experience or understanding of chronic illness then you might find it strange that I am hoping for there to be anomalies on the EEG.  Well, my own thinking is that once we have a test that tells us where the problem lies or where to further probe then I won’t have to do more invasive and/or painful tests.  My MRIs have not shown damage that could be causing my symptoms, and I have had 3/4 of my body electrified, twice, looking for nerve damage.  So, if there is no problem from the neck to the the toes, then the problem lies in the brain.  My previous EEG showed no abnormal activity.  Neither one did.  It seems like it is only happening if I am asleep or being active, talkative, excited, or tired.

I want an answer because I want to be able to reassure my daughter that we are making progress, because she sees me deteriorating.  I want an answer so my imagination will stop conjuring frightening scenarios.  I want an answer because it might help someone somewhere else to hear how I found the problem that they are also having.  Not knowing is the scary part.  It’s like a game to see which will happen first, the doctor or the seizure.

Still the positive part of this is that I am learning so much about something new.  I don’t always seems to have a problem integrating new information with old information as long as it is factual and makes sense with the other facts that I am aware of.  Woke up with occipital headache.  Did light yoga to stretch back, eased tension on neck, head still hurt, was unable to do anything that required bearing weight on the left arm or leg.  Sitting and it feels like an electrical shock is shooting down my leg, going further each time.

I take note of these feelings and sensations so that when my doctors ask, I have some kind of info for them since I forget so much.

One day I know my struggle will be over.  I just have to make it to that day.  I don’t know when or how or why, but I think we will each reach that place somehow.  I encourage you to move through your pain, try to find at least one good thing about every bad situation, try to go on for just a little longer.  It is not easy, but the adventure is more than you could every ask for…especially if you life cliffhangers and suspense thrillers!

Seize the Monkey

Today was a day that I have been dreading.  So much change in such a short time and there is nothing I can do to fix or help the situation.  I have to experience things that I never even knew existed.  The medical world is akin to the different levels of Hell that Dante wrote of.  Just hope your body works out well or you will wind up in the over-priced, confusing, everchanging, lowest ring.

I woke up feeling like I lost a fight last night.  I figured it was probably a seizure while sleeping.  I couldn’t seem to get up though, I made it to the restroom, made toast and pored a cup of coffee.  Ate the toast, drank half of the coffee and next thing I know, my daughter is scolding me for sleeping without me CPAP.  I then went back to sleep with the mask.

When I got up (about 4 hours after I first woke up) I threw on some clothes to go out to meet a friend and have a mocha.  Then, I felt a now familiar feeling, like someone is lightly rubbing the top of my brain.  It seems like every time this happens, something weird happens to my body shortly after so I sat down when I felt it.  Then it felt like someone shocked my left temple and my left hand started waving around by itself.  As this happened, I saw everything happening, I realized what was going on, but I couldn’t move the rest of my body and I was very afraid.  In a split second I understood what this could mean if the seizures get worse.  This event was only about 10-15 seconds, but it felt like an eternity, I don’t want to think about what it is like if it lasts for longer.  I feel like I might rather pass out instead of experiencing every second of my brain holding my body hostage.  I suppose either way I would be upset.

Knowing what I would be told, I called my PCP and talked with the nurse on duty.  I let her know everything that was going on because I knew she would have to chart our discussion and the advice she gave was really, I need to call my specialist’s office and report my symptoms to them.

Along the drive, I practiced the phone call to the nurse who would be issuing me temporary orders until I could get through it without feeling a lump in my throat.  I had a great mocha and I hung out with some awesome people for a bit and then I hopped back into the truck and took the long way home.  I needed to drive past the road to Mount Charleston.  I had to see Lone Mountain and the mountains that stand proudly a few miles West.

I love the sound the tires make when I change lanes and run over the little reflective thingies on the road, so I changed lanes a few times.  I saw the buildings I don’t remember and wondered how many times I have ‘seen them for the first time’.  At one point the freeway was high enough to survey a good portion of the valley I call home.  Eventually, I pulled up into our driveway and wished I were irresponsible and a bit more selfish.

I made the dreaded call to the nurse and left a message.  She called me back to let me know that she was working to get my EEG either expedited or changed to a location that can do it sooner.  Both of my neurologists would be contacted to work out a plan about how to handle this.  I was told to go to the Emergency Room if I feel like my brain is being rubbed, no more swimming, no cooking alone, and no more driving.  The good thing is that these are “temporary” restrictions until I can get a diagnosis. The not-as-good news is that any or all of these could remain permanent.  I hope they don’t, but if they are, I will have a few great therapy sessions.

More than the long-term issues, I am concerned with having one of these seizures before I get some type of treatment going.  I don’t want to spend another second experiencing an inability to control my body.  That is the real fear.  I believe it will be taken care of, but UNTIL THEN, will I be ok?

Well, guys, this is it.  I hate cliffhangers, but my life is one right now so I have to leave one here until I come back with some type of new information for you.  I am confident that even if I don’t come back with the news I wish to hear that I will be able to add many pages to the story of my life and I will end up with a better heart in the end.

If you are in a position similar to mine, my heart goes out to you.  If you aren’t, I give thanks for the blessing of health upon your head.  Just please understand, none of us are in the same boat but we share the ocean.  My issues are completely different than those of other people but we are all people and either we can work together or all just be stuck out at sea on our boats.  For now, that means giving up control of my boat and being towed by someone.  It is NOT what I want, but I am blessed to have people willing to pull my weight.  When I am strong enough, I will do the same.

If you have ever been the beneficiary of kindness make sure that when you have the opportunity, be the benefactor of love. -E. Michelle

The Monkey And The Truth

Today (the day I wrote this, because this will be scheduled out a few weeks) marks 18 years since my brother was murdered.  I suppose it is more euphemistic to say that he passed away or went to be with the Lord, but I am at a place in my life where I have to cut out the fluff and look at the ugliness that life sometimes presents to us.

The mindset began that very day.  Whatever innocence or youth I had left was drained from me as I wrote his obituary.  Sitting through court listening to the wounds being described, stepping out when they showed pictures.  I wanted to be strong enough, but I just wasn’t.  It hurt that I couldn’t gaze upon the wretchedness of what man has to offer his brother.

Then I had my daughter.  Her dad went to prison, but not before my house and phone were surveilled and all of my life was openly displayed in court.  I have never felt such betrayal.  It is a burning so intense that I love and hate the feeling.  In the end, he served time in the penn and I was the bad-guy who was pregnant.  In the end, I got my daughter and he went back to prison for more stupid stuff.  This opened my eyes even more to the real truth of any matter.  I knew that something was wrong, but I refused to look at the truth of the matter.

Here I sit, two decades later and the state of my health has forced me to look long and hard at truth and how to accept it.  I had brain surgery and I have had to accept some things, like:

  • there are many sports I can no longer participate in
  • I may never be able to return to work in the capacity that I have always been able to function in physically and mentally
  • I may never have full control over using the bathroom again
  • I will probably use a CPAP for the rest of my life
  • the headaches might stay forever…with the nausea
  • I may not be able to learn the same way or remember as well
  • chunks of time are missing from my life
  • I may never be able to suppress my emotions again

This is only a few of the restrictions I live with.  It is a chore just to live but I fear dying would take more energy that I just don’t have.  I have spent a lot of time in therapy just dealing with accepting these changes because of my health.  The feeling of growing more confident in living with my problems was getting very empowering.  I have been working to live with this pain and these issues.

Then, last week, my stepdad watched me have a seizure as I slept.  I woke up that morning feeling like a train hit me.  Later, when he explained to me what happened, I ended up having to go to urgent care so they could make sure I wasn’t injured or needed immediate care.  I just pulled some back muscles and ended up with some autonomic dysfunction.  I am waiting to schedule my 72 hour EEG.

In the meantime, I apparently bit some of the inside of my mouth off last night.  Everything hurts, and I am almost positive that I am having these seizures and just nobody is usually there to see them.

Turns out, of all of the scary, horrible things that have gone on around me, I still refused to REALLY hear what my neurologist said when he told me that he thought I was having seizures.  When my stepdad told me he saw it, I had to accept that it wasn’t just a theory from my doctor.  When I woke up this morning and pulled the piece of hanging skin from inside my mouth (just bein’ real) I had to accept that I can (and probably will) injure myself if I continue to have seizures.  I have to accept that I probably have some noticeable brain damage at this point and things might be less normal than I hoped they would become.

My point?  I suppose it is that euphemisms and platitudes don’t change the reality of a situation.  My brother was just as much murdered as I am disabled.  Sure, he went to ‘be with the Lord’, and I just have ‘some limitations’, but couching life in these nice words sure does make it seem a lot nicer than it is.  I have limitations because my brain doesn’t make memories and I have seizures that mess with parts of my body like a leg.  “My limitation is that I have poor balance,” sounds so much nicer than, “My seizures stop my leg from working and I fall and hit things, injuring myself and property.”

I don’t even know if this matters to most people, but one feels very fake and close to lying when I say it.  The other seems to offend the delicate sensibilities of anyone who does not want to know how you are doing and was asking merely as a formality.  I am tired of trying to figure out which is which.  Now, I just tell people I am alive and still walking.  I feel like this is a truth that can be observed and confirmed by the individual without adding any words that might seem negative.

Many things would be so much easier if we could just be honest without having to lay a bed of roses for these dramatic feelings people have.  “Ok, Jennifer, YOU are mad at the office because you put tuna in the microwave yesterday and now it smells like oceanic death so everyone is telling you how inconsiderate you are.  Accept the truth.  You could have had the tuna cold and not ruined everyone’s week but reheating your TunaRoni on a Monday morning.”  Of course Jennifer, instead of being thoughtful and apologetic, is all in here tears and feelings because Johnny said she smells like that all the time.  She can’t accept that something she does bothers everyone, so in her mind the truth is that everyone else is unfair to her. (This actually happened, names changed to protect the victims.)

Never would I lie and say that accepting the truth is easy.  In fact, it is often difficult because it can shift so many feelings and foundations in life.  I will say that it is extremely unfair that I have to accept the reality of my life but other people don’t and they have the audacity to contradict reality with crunchy platitudes while patting themselves on the back for “showing you the positive side of your situation”.  For me this happens most at church (ugh, right?) because everyone wants to make God the genie who is gonna fix the problem because we want it that way.  Seriously, someone told me that I don’t have faith if I take meds for pain.  Another told me that he just takes a pill no matter how much it hurts and I should just get a job.  I would go on, but then I will punch my monitor, so I am gonna drop this verse:

As he that taketh away a garment in cold weather, and as vinegar upon nitre, so is he that singeth songs to an heavy heart.-Proverbs 25:20

If I am mourning the loss of my brain function, STOP TELLING ME ANYTHING THAT ISN’T VALIDATING!  Any normal person would realize that given some time and understanding of my life changes that I will get through the initial mourning period of the loss of my lifestyle.  However, I now see that many people just can’t feel comfortable mourning with me without feeling sorry for me.

Every negative experience I have resounds in the echo chamber of my heart because I know that if I am going through this, that others are going through this.  I think about people in churches who may suffer alone because someone was willing to pray for them, but not actually listen to their story.  I worry about people in jobs that silently struggle through the day because their issues have been ignored or belittled by co-workers and supervisors.  The worst is the people at home who live with unsupportive family members.  When those who supposedly love you don’t hear you or don’t care, where do you turn for help?

Too many people are falling through the cracks and it feels like so much of it is because the truth has been abandoned for a much more comforting lie that everything is ok.  With my brother’s death, after I was informed I took a shower and went to a friend’s house.  Then I went to work that night life nothing was wrong.  I was surviving on a lie because I understood that the foundation of my life would be assaulted if I accepted the truth.  It came in steps over years.

As for my health, it was wonderful at one time.  So many little things happened, but I weathered them fine.  When I was told I had to have brain surgery, it took three days of intense introspection and weeping to come to terms with the truth that I needed a surgery that has the possibility to severely injure me or cause death, but that without the surgery there was no question that the physical progression of damage WOULD cause possibly irreversible damage to my spine that would end in disability.  I eventually accepted the truth that no matter what I do, I will face a difficult time.  I chose the surgery, and I stand by that decision.

After the surgery, I didn’t seem to get better like I had hoped.  In fact, things got worse.  Coming to accept the truth that things will never go back to anything like they were, well I want to tell you that I nailed it…but I did not.  I have been in therapy for over a year and it has been baby steps and setbacks.  I have to accept one piece of the truth at a time, then some new issue pops up, and I have to consider that it might stay a permanent part of my life.  It’s so hard to know that I will never regain the memories from the parts three years.  I only have the few things that stuck in my head.  I hope that my EEG supports a diagnosis that involves treatment to restore my ability to form and solidify memories.  If it does not, then I will have to accept that truth and still move forward with my life somehow.

The people who only see my life from the outside will never see me put on a brave face as I hear news that shifts my paradigm or listen to me quietly cry into my pillow at night because my head hurts.  Everything seems fairly simple because I just have a headache or feel kind of sick. I stopped explaining in depth because people DO NOT often understand neurology and how it affects everything from your movements to your memory to your thoughts and behaviours, so I suppose I can’t blame them for being ignorant of something that is so complex and doesn’t touch their lives.  Yet, that isn’t really the issue is it?  It is that if I really explain that is feels like someone is hitting me in the head with a hammer and shocks of electricity are racing down my spine into my leg and causing me an agony I wouldn’t wish on anyone.  That would make THEM uncomfortable though, and I suppose I should have to be sensitive of the delicate sensibilities of those around me who believe that bad things don’t happen to good people, or God fixes every problem but only if you are actually a believer, or my chakras are cloudy, or my dead ancestors are antagonizing me for leaving the place of my peoples (Tennessee).  Apparently, people of all walks of life and any age can be more concerned about their feelings than they actually are about what you are going through.  So why do they even ask? Who even knows at this point?

I know this is probably more reading than you anticipated, so if you are still with me, thanks.  I am bringing it home now!

Life is full of truths that affect us in positive and negative ways, so we need to FIRST be willing to accept both in our own personal lives.  Then, we need to be supportive of other people when they are going through something because we might be instrumental in helping them come to terms with and accept a truth.  The hard part is being willing to listen to the excruciating and ugly parts of the story and putting yourself in those shoes.  My personal belief is that all of this is the reason people offer up their well wishes and refute the truth.  It must be close to impossible to imagine what it is like not having a memory.  I wouldn’t have been able to imagine it 5 years ago.  I doubt most people want to imagine life without remembering it because they know it carries an uncertainty of what you have done and it affects the perception of time passing.  It’s an overwhelming concept when you are living it.

All of us need to work harder to understand one another because no one deserves to feel unheard or invalid.  We have to stop trying to solve each others’ problems and learn to comfort and encourage each other.  So often we share our pain because we just want someone to acknowledge that we are in pain and that it is normal to be upset about it.  Some people need you to just commiserate with them.  Now, I am NOT saying spend 5 years doing this for one problem, but if your friend is upset over a cancer diagnosis, STOP TELLING THEM THAT EVERYTHING IS GOING TO BE OK.  First, you don’t know that.  Second, they are telling you because they need the reassurance that their pain is valid and unfortunately that means feeling their pain and listening to them talk out their fears or concerns.  Unless you are an oncologist who specializes in what they have, you should concern yourself with their emotional health and support.  Cry with them when it is bad and there are no clear answers (yes, it hurts and is uncomfortable, that’s adulting) and celebrate every tiny victory with them.  It isn’t your job to cure them or predict the future, just be a friend or if you can’t then just keep away from them.  You are toxic and I am sorry that no one has ever shared with you.

I know this is probably rambly and here and there, but my memory is making it harder for me to stick to a point.  I  have been trying to shorten my blogs because I am in a holding pattern medically while my health is deteriorating and presenting some surprises.  It gets hard to think clearly for longer than a few minutes at a time.  Still, the best part of this is that I am a living testament to the treatment of how people with hidden illness are often treated and how one person can use all these great social media platforms to just share what life is really like.  The good, the bad, the ugly, and the downright gross.

In Monkey Time

A lot of people have been attempting to gently push me back into a life full of activity.  They want me to sing.  They want me to go out.  They want me to sing.  It’s wild!  I think people worry that I am sitting at home being miserable all of the time.  Really, it is only “a lot” of the time that I sit around being miserable.  The times when I feel OK or better, I am doing my best to live it up.

I practice ukulele to help keep my fingers limber (although it hurts after ten minutes).  I swim and enjoy our pool (but then I have to take a nap because I am worn out).  I go to the gym (then spend an hour stretching so I can move in the morning).  I stretch in the morning (so I can move for most of the day).  I drink coffee (sometimes I have to actually brew it myself). I devise methods for hanging up my clothes.

Doesn’t this sound like the life?!  What makes it difficult is that I used to be able to do all of these activities and a whole lot more.  It has taken over a year of behavioural therapy and psychiatry and music therapy to just feel ok enough to allow myself to rest when I KNOW I could be more productive.  I just can’t push myself the way I used to.

At this point I don’t think that I want to anymore.  I have spent 20 years working and adulting so I could have something to show for my efforts at this point in life.  Everything I gained is inside of me except for my daughter.  I have gained (some) wisdom from my foolishness.  I have acquired (some) knowledge from my adventures.  I have more insight due to my failures.  I have grown internally like a weed on steroids and protein powder.

Yet, I am human, and I wish I had been able to buy a house or keep my car or any number of things.  Now, I ask myself if I would have had time to enjoy it anyway?  I was a workaholic.  I would have passed out exhausted every night in a beautiful bed that I never had time to admire.  I just wanted a normal life.

Now I realize that “normal” is just what happens all the time.  Right now my life is completely normal FOR ME!  The key was to discover what I felt the word ‘normal’ meant.  I thought it meant what everyone else does, but we all do different things, so that isn’t an accurate description.  Now I think of ‘normal’ as the usual routine.  When the routine changes, we end up with a ‘new normal’ and I think that is a healthier way for me to look at the world.  It is important for each of us to define our own goals and learn how to acquire the tools to reach those goals.

I get a little discouraged because I don’t have any type of idea how my life will change over the next year or so.  I am waiting to be tested so I know if my neurologists suspicions are true or not.  I am waiting for my disability hearing.  I am waiting for the ability to make an informed decision about my life and sometimes the hardest thing to do is wait.  While I wait I try to keep myself busy with the things listed above.  I hope that doing them everyday helps me regain stamina and energy, but even the results of that will take some time to manifest.

Hopefully I have enough years ahead of me to find what it is I need to feel like my life has a fulfilling purpose.  Maybe I just am not old enough yet and all the pieces are not in place.  It will all happen when it is time for it to happen, not when someone pushes me into doing it.

I doubt that I am the only person who is going through this and my wish for everyone out there who sees this is that you learn to listen to your own mind, heart, and body.  Learn what is right for you and not for other people.  You are more than capable of making your own decisions and asking people to abide by them.  You have the ability to cut negative people out of your life.  You have the ability to change paths.  You might have to clear a new path or climb a tree, but you will amaze yourself continually along the journey.

If you are reading this and wondering if I am for serious…YES!  I AM FOR SERIOUS!!  So serious I am using poor grammar.  While I (and many other people out there) look healthy enough to live like Larry, I am missing some skull and some neckbone, so even holding my head up is work.  I don’t keep my head tilted because I am draining my thoughts, it is because my neck isn’t always strong enough to gracefully balance 8lbs of skull and brains.

The injury to my brain has left me with long-term if not permanent issues.  This isn’t to say that I am giving up my badge and gun, I am just going on patrol duty for a while.  I have to build back my strength in all areas.  I deal with very erratic emotions (they are so awful), pain that is absolutely amazing, memory loss, digestive issues, nerve dysfunction, and a litany of other smaller but just as annoying issues.  This isn’t ‘wait six weeks and get back to life’, this is ‘wait six years and measure your progress, good or bad’ and that feels like forever.  It is no promise that I will be fixed.  However, I am hopeful that I will regain more use of my memory and my hands.

At less than a thousand words I have taken three breaks.  This affects my life in a way most people can’t see.  I hope that by continuing to blog and write that I am able to build up even the strength in my hands so I can share my experiences.  I hope to make visible the unseen struggles of chronic illness.  If you don’t have an illness or condition, you can still be an advocate for those who do.  I don’t even know what is wrong with me fully, I am in the process of advocating for medical medical workups after traumatic incidents.  I may not have my problems had I gotten the proper treatment 4 years ago.  I don’t want more people dealing with what I am dealing with, so I am doing everything I can to share my knowledge and experience so that people have a first hand account to consider.

Most of us wish to be contributing members of society who work and live ordinary lives that are nothing special.  In many cases, the only thing stopping us is the society we live in.  We shun those who can’t work or are injured or ill, we have to implement laws just to get accessibility to ordinary places for some people, and we even have to prove that we have a medical issue TO DOCTORS, never mind the surgery scar or my pharmacy-in-a-bag.

Let’s work together to find a way to get through this tumultuous, beautiful life.

The Monkey Cares

At the beginning of the year I decided to make some adjustments to my eating and I came out of the beginning of the year eating way less meat than I used to and more plain veggies.  Due to medication changes, I gained all of the weight I had lost and a few extra pounds for good measure.  Then it got too hot to even go for a nightly walk.

Since I have had some strength testing I have spent a lot more time in the gym pushing myself to get fit without overdoing it and injuring myself.  I and slowly getting the pounds off, but because I incorporate weights, I can’t always rely on my weight to tell me what is going on.  So, we got a new scale that measures weight, BMI, body water, body fat, visceral fat, bone mass, BMR, and muscle mass.  Really, I pay attention mostly to water, BMI, and muscle mass.  I do look at everything else, but while my weight hasn’t gone down as much as I might like, my BMI has gone down and my muscle mass has risen.

When it comes to health, I think we all would like to fix a thing and then everything else falls into place.  Unfortunately, life doesn’t work that way and we have to be vigilant about multiple things to fix just one problem.  On the bright side, if we manage to keep up with regular maintenance on our bodies, we probably won’t have as many failures of health.  The thing is, even when we do keep up with our bodies, we run the risk of getting injured by an external force that we cannot control.  So, it’s just good to be proactive because you might need that health later on!

I am keeping myself busy taking care of myself from facemasks to fiber to dentists and it feels good to know that at the very least, I am doing what is best for me.  I faithfully drag myself to the gym almost every night to get a workout of some sort in.  I drink water like it is going out of style.

The point of all of my ramblings?  To encourage you to invest time into your health and well-being.  When you live with a chronic condition it can get easy to forget or put off skin-care or exercise and I understand that.  Ease into a routine that fits your needs and abilities.  I have used canned vegetables as weights before because they can be lighter than one pound.  Even just taking five minutes to stretch and breathe can help you care for yourself.

It doesn’t have to be big, it just has to have a start.  Then as you feel comfortable, think of ways to care for yourself, to make yourself happier with the person you see in the mirror. It takes time and it can be hard to feel OK with self-care when you feel like you are always being cared for.  I learned that I cannot live by the worth placed on me by another person; I have to value myself and treat myself as a person of worth FOR ME!

I want you to know that chronic conditions aren’t what defines us.  We define ourselves.  I implore you to look inside yourself and polish the you that is inside.  You will be amazed at how you shine a light to help others love themselves!

The Monkey’s Plot Twist

Last Tuesday I had an appointment with my neurologist.  Now, for two years I tried to get into this clinic and it finally happened.  I got scheduled to see the neuropsychologist and that was just a bad visit.  He did not believe that my memory impairment was what I explicitly said it was and he attributed it to everything but actual memory loss.

What this does to me as a patient is it makes me question myself and whether I have a realistic view of my own situation.  However, once he recommended therapy, I knew that he hadn’t read my chart as carefully as he made it seem as I have been in therapy for a year at this point.  Still, it is disappointing and he brought up my age and how I don’t fit the profile of someone who comes to the brain center.  I am not even in my 50’s.  I left that appointment afraid that I was going to be left in limbo and I didn’t even want to go back for my next appointment.

What kind of limbo? Well, as I explained to the doctor, it is like I relive the same day over and over, but everyday is slightly different.  I don’t recall holidays, people I meet, things I have said, places I have been.  Things just are weird.  I feel like I am in a dream that is dragging on.

Well, when I took my mom and sister to the neurologist we were in for a surprise.  As we got to talking, the doctor seemed to zero in on my memory lapses.  He was furiously typing away as my mom and sister rattled off incident after incident of my forgetfulness and he asked more and more questions.  Finally, he looked at us and told us that he thinks I am having seizures in my brain that are wiping out my memory.  He validated my complaint that I have lost large chunks of time and that was such a burden lifted off of me.  There is nothing that I would be able to do to control this or anything.

So, I have to get a 3 day EEG and I am praying that that will give him enough evidence to make a diagnosis.  This could be how I go back to a more normal life or not.  It WILL be how I am moving ahead because I have to go forward and I am not giving up anytime soon.

This is the process.  It is long.  It is disappointing.  It is emotional.  It is painful.  It is how we try to get to the answers.  It is often very private, so most people don’t know until they have been put in the position to know.  This is why we, the patients, have to be more vocal (in a POSITIVE WAY) about our illnesses and how they impact our lives, our families, and our futures.  Most of us want to continue being productive members of society, but until society changes how it treats illness and injury we run the risk of not getting the level or type of care we need fast enough to stave off permanent disability.  I should have been getting neurological rehab two years ago.  A doctor who refused to fill out the paperwork for the referral caused a delay that may have left me with permanent brain damage.

We need our families to rally behind us and advocate with and for us.  We need our friends to learn about our illnesses and conditions so they can spot a situation where they can advocate.  It is great that the disease is rare, but knowledge does not have to be!  I wear my Chiari shirts to the gym and people ask about it.  Online, people ask about it because I am constantly talking about it.  I want everyone to know the symptoms and be aware that anytime multiple systems in your body go haywire that it is time to go to the doctor and start searching for a cause BEFORE it becomes damaging or inoperable.

If you find yourself frustrated at the lack of knowledge about your situation, I encourage you to get pamphlets to hand out so you don’t have to keep repeating yourself.  We all have to be the change we wish to see.  I can want my life to be different or I can act and make it different.  I hope you choose to be the change.

Monsoon Monkey

Recently I have been experiencing a heavy emotional load and with monsoon season upon up, I have been plagued with headaches and nausea.  I would like to remind you at this point that when I have a headache, a LOT of body systems do not function properly.  So, it has been uncomfortable all over.

I have pushed against this by going to the gym almost daily and doing light cardio and weights daily for about 2 weeks.  It has not helped my energy levels but I know it takes time to work things out, so I am really just focusing on consistency right now and expecting to reap rewards later.

Many people don’t understand the life of someone who deals with chronic pain or illness.  Often times it isn’t that I don’t want to do anything, it is that I have a more difficult time getting ready to go out, so it becomes a hassle.  How?  I will tell you about going to church last Sunday.

It is monsoon season (as mentioned above) and I have basically had at least one episode of headache pain a day and constant nausea.  So, I woke up around 0630 and drank some water and took meds.  I felt sick, but my headache was manageable so I got in the shower, dried off, put on foundation garments and prepped my face for makeup.  At this point, I am warm.  I plug up the curling iron, start separating and sectioning off my hair.  After curling half of my head, I was sweating and getting dizzy.  So I sat in front of the fan to cool down. When I felt well again, I put on foundation, blush, and bronzer.  Then I curled the top half of my head.  I immediately had to sit in front of the fan as I had begun sweating again and it would have made my hair frizzy (it did anyway).

I grabbed my tights, put them on and had to take a break.  I put on my dress, jewelry, lipstick and shoes.  I drank a glass of water and had some cold ginger ale because the nausea was just amazingly strong.  I put my purse in order, got the car keys and had to run to the bathroom, but I couldn’t pee because I have a headache, so, I washed my hands, walked out the door.  Halfway to the truck, I vomited in the yard unexpectedly.  I came back in and brushed my teeth.  I left and went to church.

This took about three hours judging from my text messages.  That is longer than I actually spent at church.  Then, I had to come home and put on comfy clothes, washed my face, fixed a food, and then rested because I was worn out.

This. Is. My. Life.

Of course every day isn’t this involved.  Sometimes I have the dubious pleasure of going grocery shopping with a headache.  Do I have a list? Yes!  Did I bring the list? Yes! Am I going to get everything on the list? NO! Why? I forgot the list is in my pocket so I am not even sure why I came to the store in the first place!  Now I will just spend an hour walking back and forth until I fill my basket with things that “feel” right.  Then, when I change clothes I will find the list and see how big of a disappointment that trip was!  Delightfully frustrating.

Why delightful?  Honestly, it has a sitcom-ness about it and it helps to be able to find some humor in these situations.  The perceived failures in my life are enough to break my spirit, but I keep going so I can get stronger.  I draw my comics because my life often feels unreal; like these things only happen in the movies or on TV.  I find a lot of hope in my laughter because if I can laugh at my pain then it can’t take over me.  I have my bad days, but I have the light of hope in my heart.

This seems to be one of the biggest misunderstandings about those who live with a chronic or painful condition: People assuming that if I can smile, laugh, or have a good time that I can’t possibly be experiencing what I say I am.  So, just because I have a headache I can’t smile now?  Just because I feel sick I can’t appreciate something funny or beautiful?

That’s whack, yo!

So, I have a quick mental exercise for people who have never dealt with a chronic condition.  Imagine your least healthy day. It might be a bad flu, when you broke a bone, had a surgery, or whatever.  Now, imagine feeling like that 24 hours a day for at least 4 days every week for the rest of your life.  The thing is, people will imagine all sorts of different things and disabilities/illnesses are just as diverse!  So, now you might be thinking of that time you had H. pylori, but if you were always experiencing that it would mimic illnesses of the gastrointestinal system.  If you dislocated a joint, imagine having EDS and doing it all the time.

Most people cannot comprehend how every facet of life is affected when you are in pain or limited physically because they don’t have to plan around their body’s extra needs.  Four years ago, I was probably the most ignorant person out there.  Now, I am constantly apologizing for being late, underprepared, or just missing something.  So, I encourage you to speak to someone about how illness really affects them.  Besides, they will probably be glad to have someone to listen to them.

If you are dealing with the feelings of someone who doesn’t understand what you are going through, I encourage you to educate them.  If they don’t listen, I encourage you to walk away.  We do not HAVE to justify our needs to ignorant people nor should we waste our precious spoons worrying about what someone else thinks.  Find what works best for you and stick with it unless you find something that works better.

I hope that one day nobody has to suffer with Chiari Malformation and the slew of wild symptoms it can bring.  Until then, I hope to help people feel more comfortable advocating for their healthcare and to be treated right in public spaces.  Chiari is not really on the public’s radar and barely on the medical field’s radar, so one by one, we have to start making it visible and help people understand what we go through.  Not for sympathy, but because it is probably under-diagnosed but still quite prevalent in the population.

Also, if you are dealing with weather and that is aggravating your symptoms, don’t feel bad about rescheduling appointments or lightening your workload for the day.  It’s never worth a bad flare-up because you will lose more time from that than just easing up.  It can be difficult to accept the new normal but you can do it.  I have faith in you!

Monkey Comfort

People seem to have a problem with understanding a few things and I would LOVE to set the record straight (as I see it, so, slightly skewed, I suppose).

If I come to you with a problem, NO MATTER WHAT THE PROBLEM IS, I am probably coming to you because I trust you, I feel safe around you, and I feel you are a soft place to land.  I have discovered over the past three years who most of these people are, but every so often one surprises me and I land in a hard, rocky place with no comfort.  If I have dared to ask you for advice or insight, it is because you have shown yourself to be a wise person.

I don’t need for you to shame me because I take prescribed meds for any purpose or because I am not following a regimen that your doctor has you on for something similar, but different.  I don’t need you to tell me that I am probably blowing it out of proportion or that I shouldn’t be concerned because I don’t really know.  Surely I don’t need you to tell me to get a job when you know NOTHIN’ JON SNOW!  It never even dawned on you that my doctors don’t think that is a healthy choice.  You never considered that my neurologist knows more about my brain than either of us do! You never considered that I was coming to you because I needed you to tell me that it was ok to be scared but that I was surrounded by people who love me and even if my world comes crashing down, you will still be there to comfort me.

I wish I had realized all of this before I began sharing my life with my associates, but I thought we were here to love each other and be understanding of the hearts of one another.  Of course there are times when we have to be serious and stern and put a foot down, but not when someone is pouring out their heart.  This is a time to listen to what someone is truly saying to you.  Often we just need someone to tell us that it is normal to feel sad/weird/upset/angry/resentful in this situation BUT they can leave off why it isn’t right and why you should do better.  Give each person time to come to terms with their feelings and then they are better able to listen to HOW to change the behaviour or outcome.

For more than three years I have had to deal with people telling me how to fix a problem that we are just now beginning to understand.  There is more than one problem, but one likely inspired the other to come to fruition since there is a genetic link.  I have felt like I have lost great chunks of my life (let me remind you that I get his with “oh, I lose my keys too!” and it is SO degrading at this point) and I have had this all but confirmed by one of my neurologists.  After testing, we will be sure, but when you see it with your own eyes, it is hard to deny the truth of the matter.

The best part? I have to put on my smile and keep going and at this point suffer in silence because almost nobody actually hears what I am saying.  As of two days ago I was medically banned from driving, swimming, taking a shower in the house alone, being by myself, going to the gym, dancing, and anything that could cause harm to myself or others, until further notice.  I refuse to tell people why.  Why does it matter now?  Is it because now you might get a glimpse of what is going on so you can actually believe what I have been saying?

Ya’ll detect some resentment here?

This is the part I have to work on.  I can’t live resenting people and their callous words because I know that in reality, they are probably doing the best they can and don’t know how to be any better.  Some might even say I am in a position to enlighten people and bring them to a place of understanding hidden illness and how it affects the different facets of a person but I don’t really know how to do that yet.  Sometimes I try to explain and I get a mansplaining I won’t soon forget (but luckily I usually do).  I am trying to make sure I use these experiences for myself, to thicken my skin and toughen my heart.  I cannot let the words of others be the downfall of my spirit.

When someone comes to you for reassurance that the world isn’t caving in on them, don’t use your logic, use your heart.  Assure them that you understand how upset they are and love on them.  I am NOT saying agree with them or help perpetuate something that is dangerous or unhealthy, just acknowledge their feelings and listen to them.  Don’t tell them how this could have been avoided, or how it was when you were in a similar, but different, situation. JUST LISTEN and reassure them that is it ok to be upset but not to take out your feeling on others.

For anyone who can’t seem to put together what I am saying, I will put it in steps for you.  When your friend comes to you in emotional distress:

  1. Ask them if you can get them anything (like water).
  2. Ask them what is going on, but ONLY if you are willing to actually listen.
  3. LISTEN actively.  Make eye contact, nod in understanding, and if there is something you don’t understand, ask for clarification if it is important to the situation.
  4. Confirm that you heard what the person is saying and validate that they have feelings concerning whatever it is they came to you about. (This DOES NOT mean you agree with the situation, only that they have feelings about it.)
  5. Ask if there is anything you can do to help friend get through this situation.  Follow through if they ask for something.
  6. Check on friend in a day or so and see how they are feeling about the situation and maybe this is the time to talk about solutions if they are ready.

I hope this helps us all become better listeners and friend because let’s face it, we aren’t running out of problems anytime soon!

*Note: if you see something you have said or done on this list and feel convicted about it, don’t worry, all of these situations have happened multiple times.  Individually, you were only one stone on my chest.  Don’t feel bad; do better.

The Troubled Monkey

Life has thrown some curveballs.  Right now, it is raining curveballs.  Even as good things are happening out of nowhere, our family is being stretched in other ways.  With nothing extra happening, I am tired.  Right now, I am in a medical testing phase, which is physically draining.  The tests can be rigorous (like the FCE) and the schedule of appointments can be frustrating.

This week alone I saw four doctors in three days.  My sister hurt her arm, so that is always another concern of mine.  I worry about her like a sister do.  I just want her to be happy and healthy, but life.

A close cousin lost her job.  A family friend is in the hospital.  we just had to get extensive work on BOTH of our vehicles.  While all of this is stressful, yesterday we learned that my uncle was given three months to live.  It isn’t just that, it is that while he has been dealing with cancer, I have been dealing with my brain.  All this time, my mother chose to stay here to help take care of me and my daughter and now her time with her brother is waning.

I can’t imagine the decisions she has had to make to ensure my care.  Thankfully, my car accident case just settled and while it isn’t much, it is enough to send my mother home sooner than planned if needed.

I am happy that most people don’t live in the constant state of turmoil that my family is often in.  It is so stressful.  Everyone and every family has issues, but chronic illness adds a new dimension to life.  I often have multiple appointments scheduled three to four months out at a time.  So, when we are hit with emergencies, we get spread thin.  We make it through, but we get tired.  As a family, we are tired.  It’s hard, but this is why in every post that I can I tell you to get a support system and use them!

For me, that is my family, my pastors, friends, and my therapists.  No one person can fill every role nor should they be expected to.  In times like these, my family has to diversify and reach outward for support as a group.  Our family as an entity must be protected and the people who love and care for us have rallied around us as we rally around another family member.  Layers of support in a beautiful show of love.

This is what drives me to continue helping other people is sometimes I have to be on the receiving end and remember what it feels like to be helpless in some way.  It drives me to mend that hurt in the lives of others if I can.

I don’t really know how much of this family issue I will share in the future, but I feel like it is important for everyone to understand that just because my family is dealing with one big thing doesn’t mean we are immune to another major event overlapping it.  It also does not negate the normal parts of life that have to be dealt with: check-ups, dentist, tire rotation, meals, bloodwork, grocery shopping, appliance replacement, coffee, laundry, and all of the other things that it takes to live well.

My illness has simply added another facet to the gem that is my family and gives us the opportunity to shine brightly even when it seems dark and the light can’t be found.  The lapidary of life is fashioning us into something amazing.  Sometimes that means going against the grinding stone and becoming something new.  Doesn’t feel great, but we will be better off for it.

Life doesn’t feel great when we are in the midst of the storm, but eventually the waters recede and you can already see growth that just could not have happened in good times.  So again, I encourage you to find and build up your support system and make sure that you are part of the support system for others.  Never just be an outlet, pour into other people.

Every Day Is Monkey Day

Imagine you are at work laughing and talking with a coworker you have had for years and he brings up how he broke his leg six months ago.  You have zero recollection of this, but you just go along with everyone because either you don’t remember or there is an elaborate plot unfolding around you.

Later you go meet friends for dinner and one friend brings someone you have never met…but she knows your name and about some random fact only you would tell someone.  You ask a lot of questions but nothing is making any sense because this girl is nowhere in your memory.

As you leave and walk to your car you encounter a couple who brighten up as soon as they see you.  You wonder what they are so happy about.  They tell you about an interaction you had many months before and update you on a condition that you have no idea about.

When you get home you brew a pot of coffee and sip and think about how these people know you but NOTHING about them and you are beginning to question the reality of the entire night.  You look at whether you have taken your meds on schedule or whether you have eaten, gotten enough sleep, wore your scarf too tight.  It actually doesn’t take much to begin a downward spiral into the dark hole of our own existential terrors.

Imagine this happens frequently.  You begin a cycle of questioning the reality and validity of things and people.  You spend time not going out for fear that someone else will recognize you.  Eventually, you start to wonder if you are meeting people and completely forgetting them.  If that is the case, are you also doing things and forgetting them?  What have you said that you can’t vouch for?  What have you seen that you may never recall?

Oh, man, the possibilities are endless.

This is what happens to me quite often.  I deal with the public and so I encounter a lot of people.  I mostly only remember the ones I knew prior to the accident.  When it happens, usually I am caught off guard by someone who says my name.

When I look up, some stranger is there with a giant grin and quickly closing in for a hug.  My current situation does not allow me to violently recoil from people, so I end up in the awkward embrace of a stranger who feels like we are friends.  Inevitably, they bring up some “thing” we talked about last time we met.  Then, they have the nerve to look offended when I ask who they are.

Like they are so special that they can jog a memory that doesn’t even exist!  When I remind them that I have memory loss, they counter with something awful like, “don’t we all?! I lost my keys this morning!”  That’s nice Marcy, but I LOST 3 YEARS OF MY MEMORY!!!  Then they get to the dreadful business of explaining the entire interaction from our “alleged” previous encounter. They bring up useless facts like the earrings I wear every day or the types of weather outside.

Then I steadfastly refute any claim of knowing them, their faces turn to a dejected sadness.  Almost like I said they were a nobody.  I suppose it could be taken as you are nobody to me, but that is just because you aren’t a part of my life.  Some people get upset because they think I am being mean.  I am not sure what happens to them after that because I forget a lot of what goes on.  (I had to ask my daughter for info to write this…because I FORGOT!)

My daughter tells me that they come to her hurt and confused as to why I don’t want to talk to them.  Apparently, telling someone “I have poor memory and I probably won’t remember you” isn’t enough.  I have to be the villain and look bad when I make good on that information and have no idea who you are.  Thank you.

On the inside, I feel like my timeline has stopped.  I feel like I live the same day over and over again with minor differences.  It frightens me to think that there is even the possibility that this could be a lifelong problem.  In my head, it might always be 2016.  I may always be 34.  The problem is the dissonance created when the world around me disagrees with everything in my brain.  I feel like I am playing a game of pretend and my life is at stake.

I am glad that my neurologist agrees that this is more than an issue of forgetting when I placed my phone.  In the end, this could be a very serious diagnosis once we look a little closer at my brain, but knowing that I am not crazy and that there is nothing that I could have done to prevent this is reassuring because it lets me know that my brain is malfunctioning and not the people around me (mostly).

I can only imagine the frightening spiral of uncertainty that people must go through when they don’t have adequate medical care or a strong, advocating support system.  I can see how easy it would be to slip into a state that prefers to accept what is in the brain as opposed to what is in the real world.  I am no doctor or scientist, but I live on the precarious edge of reality at times and it is scary to think I might fall one day and nothing is familiar anymore.

For now it is a nagging thought and I hope the tests put some of my fears to rest.  However, this post wasn’t really about me.  At least not my current self.  In the Before Time I was the person who just said things to hurting people to make myself feel more comfortable.  It was never really about their situation, it was about how their situation was affecting me.  Now that I am on the other side I realize what a disgusting human being I have been at times.  I didn’t do it on purpose, I just didn’t know or care.  I try not to get too mad at people about it, but it gets to me at times that people who aren’t 15 or 25 or 30 are saying such insensitive things to me.  Who else are they treating this way?

This is not a time to be ashamed of being a jerk or ignorant, it is the time to just learn about our conditions so that you aren’t making US feel like the crazy ones when we have reasons to be how we are.  It’s time to educate you children on the extremely wide range of disabilities from the most visible to the invisible.  We have to make this world a little more manageable for our kids, some of whom will be born healthy then at some point in life be stricken with injury or illness.  Wouldn’t it be great is they were never treated different?  If they had the amenities of every other child?  Most of all, wouldn’t it be great if people respected your child’s diagnosis without questioning whether your child isn’t just “stupid” or “slow”?

I can’t imagine having the problems I have now as a child who doesn’t understand the world as much and growing up with people not believing me.

Yet here I am as an adult, and people don’t believe what I am telling them.  They all just think if I had some kale, everything would work out.  So, if you happen to be in a similar, awkward place in life where you don’t remember much of anything, I understand your frustration.  Just know that it is usually not the person’s fault and often times you have to be very specific with a person, like this: “It is really nice to meet you again, but remember, I won’t remember you next time we meet and I will wonder why you are weird.”

If someone asks you to remind another person of something, tell them NO!  remind them of your memory and refuse to be responsible for their messages.  If someone tries to get you to commit to something in five weeks, tell them send you an email with an event invite or you will probably book that day for something else.  I do that all the time.

Most importantly, don’t ever blame yourself for something that you really have no control over.  There are many diseases and conditions that are caused by excess weight, poor diet, reckless behaviour, and sedentary lifestyle.  These are the diseases that you should look back on your like and ask what you could had done to prevent it and how you can treat it.  The type of memory loss I am suspected to have is probably cause by my brain drooping out of my skull for so long.  We don’t know how much brain damage it has caused yet.  There is nothing I can do right now but wait and hope for the best and prepare for the worst.

Everyone else, be kind.  life is too hard and too short to treat other people poorly.  Especially when you don’t know the circumstances that made them who and how they are.  Freely give love and may that love be returned to you and your family when you need it.

The Monkey, Life

This has been a difficult 7 days.  Getting our washer, dryer, and dishwasher has now become an ongoing nightmare.  My uncle died.  A friend’s baby died.  Another friend’s brother died.  My sister is not feeling well.  I mean just a mountain of pain.  As someone who desires to help, there really isn’t much I can do right now.  I am in the place where I have to experience the pain that I often deal with in others.

The best part about all of this is the birth of a little girl to another friend of mine.  I am not a “baby person” but in these times we celebrate every single thing that we can because we need every ounce of joy we can find.  I suppose at times we must shed our tears while we smile and that is ok.

The next few days will fly by.  Funerals I can’t attend, a memorial to plan, a new life to welcome into this world, phone calls, paperwork, cards, and so much more will happen.  I know that while life moves on for most of us, a few of us will be stuck in moments of time experiencing the surreal feeling of unexpected stillness.  My aunt will have coffee alone, but I expect for a while she will make enough for two.  My friend will walk up her stairs every night and come face to face with a baby-less nursery.  My own mother will only have one sibling to speak of in the present tense.

While I was going through my brain stuff, my uncle was going through his cancer stuff.  Multiple myeloma.  A piece of me feels awful because my mother made the choice to be here with me instead of spending more time back East with her brother.  As a mother I would definitely make the same decision in that circumstance, but as a girl who has lost her brother I know how badly she wanted to be there to support him.  I am grateful to have a mother who is willing to sacrifice almost everything to help me.  I am glad that she made it back out there and was able to spend time with him before he passed.

What does all of this have to do with Chiari?  Well, life doesn’t stop happening because we had surgery or can’t get up some days.  Just as I affect my family, my family affects me.  I don’t wish to have a headache AND mourn, but I don’t really have a choice.  Chronic illness doesn’t really take a day off.  Trying to make sure that my emotional turmoil doesn’t translate into increased symptoms is a mixture of therapy, coffee, yoga, the gym, cartoons, music, and blogging.

If you have a chronic condition just make sure to listen to your body when you are going through ANY difficult situation.  Dealing with emotional pain takes a lot of energy and there is nothing wrong with handling it in whatever way is healthiest for you.  When I got the news, I had about six hours before I was emotionally run down and I turned off all of my devices , put my CPAP on, and went to sleep.  I woke up, went to the gym, then went back to bed.  Did I miss phone calls and text messages?  Sure!  Did I get back to everyone when I was well rested and emotionally available?  Yep!  Everything survived when I took a break for myself and NOBODY was upset.

If you are just peering into the lives of the chronically ill and pained I invite you to imagine how the world would go on if your leg broke.  Now, imagine that everyday except maybe your leg broke off and now you have some medical issues.  You may have also developed depression.  Also your bladder doesn’t work right.  This is your new life.  You get to keep all the hassles of your old life (bills, mortgage, cooking, taxes) but now you get to marry them to all of your new problems.  Also, you still have the unexpected auto breakdown, dead fridge, and air conditioning troubles.  Then…BOOM!  Tragedy!  On top of ALL that other life stuff.  You would want to lock yourself away sometimes.

It’s alright to take time for yourself when you need to.  People may think that you are lazy or disinterested, but those people can’t appreciate what you go through on a normal day, let alone a day when something is very wrong.  You know your true intentions and that is all that matters.

The Monkey Is Tired Of It

Life is such a beautiful mess.  So many awesome things happening at the same time as the devastating things.  All of this while the daily stuff is happening also.  Everything becomes a big jumble of smiles and tears and relief.  The amazing part is when we are able to buckle down for the ride and endure long enough to make it to the end of a trial and we can see our own growth.

Right now I am trying to hang on to my own situations.  I was supposed to have a neuropsych evaluation but they decided not to do it because my meds were changed and this and that.  What I took away from the experience was that within the course of an hour, a person who I have never met has made a decision to not perform an evaluation that I need and have waited three months to get, all because he feels like I am too young and not problematic enough to warrant the test.  I respect his right to have an opinion.  I think his opinion is trash.

This ends up being the difficult part about having a little studied problem.  There is no Chiarologist who understands the ins and outs of life with Chiari Malformation and the many issues that spring forth as a result.  Seriously, this guy I saw recommended psychotherapy to change how I look at the pain.  The pain of a headache that prevents thoughts that aren’t about relief or complaints of pain?  The pain of a headache that can slur my words AND my thoughts?  It was like dealing with a stale piece of bread.  (I am not sure what it means either, but I am standing behind it.)

So, when I go back an see the neurologist we have to figure out how to figure out what is wrong with me because even the best neurologists in the county can’t seem to understand why my brain is doing it’s own thing and they have no name to put to it.  Well, it’s Chiari, but apparently out of my whole medical team, I am the only one who regularly reads studies and medical journals about Chiari Malformation and what it causes.

It doesn’t help that I am in the smaller category of people who experience a decline post decompression.  It is no surprise that a patient like me is a liability.  I am a hot potato in my doctors’ hands and none of them want to get burned by dealing with a little known condition that affects the entire body.  After I expressed all of this to my music therapist on Friday I told her I felt like giving up and I understand why so many people have given up on their doctors.  I understand why so many people feel like their doctor doesn’t care or understand.  Most doctors don’t want to be “taught” something by a layperson when they are the specialist.

In the end it is frustrating for the patient and the doctor.  I believe that most doctors have good intentions but their practice volume or type may not allow for the patient that needs to be researched and given extra time.  I also think that a lot of patients don’t want to feel like a guinea pig or a “special case”.  I don’t think that our current medical system is geared toward really helping those who no one else can help.  If I had diabetes or heart disease, everything would be laid out in order for me to do.  If I were diagnosed with cancer, they would send me to a center that dealt with that cancer no matter how rare.  My brain fell out of my skull and now I barely have a memory and my body and brain fight a lot.

So, this is why I continue on: I don’t want anyone to have to go through what I have been through just to be heard and helped.  I go forward with the tests and the appointments because I will pave the way with my experiences.  I will be a voice for everyone who is marginalized by the medical community.  I will begin to build a bridge to fill the gap in care for patients with rare conditions that doctors can’t be bothered to study.  There is no reason that people should be made to suffer because their medical providers can’t or won’t take the time to dig into their condition so it can be properly treated at the earliest time.  Maybe this means changes need to be made on a more fundamental level, but the more I suffer, the louder and more forceful my voice will become as I demand change.

I encourage people I meet to advocate for themselves and others.  People are afraid of standing their ground with a doctor who has a differing opinion because the doctor will just tell you to leave.  We have become docile and obedient, even when we are still in pain because the treatment isn’t working.  If it gets brought up, the doctor will usually lay the blame at the patient’s feet for being to fat, skinny, diabetic, drug-seeking, “it’s in your head”, or any other number of  unimportant reasons.  So, as a patient it is important to keep up with all of your conditions and learn about the medical information concerning yourself so that if you have to question something, you know what you are talking about.  This helps the doctor take you more seriously.  Look into all the treatments available and the pros and cons of each treatment.  Look into statistics involving your conditions so you understand where your doctor is probably getting their information.

Most importantly, don’t spend your time suffering with a doctor who doesn’t hear you or understand what you are going through.  If your doctor is arrogant (“I am the one who went to medical school!”), rude (“You are no Spring chicken!”), demeaning (“People like you…”), or in any other way off-putting, file a complaint with your insurance, the facility (practice, hospital, surgery center), and then get another doctor after doing some research.  Filing a complaint is important because we don’t need people in the medical field who see us as clients and not as humans.  Researching to find a doctor who has dealt with your specific condition is a little easier now with so many reviews and people on the internet, but sometimes there just isn’t a doctor nearby who deals with your rare condition.  So, we advocate for a pipeline to be opened up to funnel people to where they need to go instead of just letting them suffer and branding them “problematic” or “drug-seeking”.

I encourage you to seek therapy if you are going through a difficult medical issue.  Have that outlet so that in time you can use your voice and experience to open doors for other people.  I know that I might just have nasty headaches for the rest of my life.  If that is the case, I will constantly remember why I am advocating for better healthcare and mental healthcare.  I hate to even think there is another person on this earth right now who is experiencing what I am experiencing.  The screaming in my ear is enough to drive someone mad!  Luckily for me, I was born mad so this isn’t the worst.  The nausea is the worst, no doubt.  I shudder to think about living this way for thirty more years!

Ok, so I am starting to be mentally sidetracked and all I can think about is peanut butter and jelly.  So, that must mean we are at the end of this post.  Be the voice you long to hear fighting for you.

Monkey At The Movies

I just got home a bit ago from the movies. I saw Incredibles 2 with her as a mother-daughter date and I enjoyed the time we spent together.

Less than an hour ago we made it home and already I have forgotten much of the movie. I hate the thought of such an expensive evening but not remembering the movie, but I had to change my mindset. It isn’t about the money or the movie. It is about just strengthening the bond I have with my daughter.

There will be so many things that neither of us remember, but I hope we always remember each other fondly. She is a teen with an attitude and opinions and all that, but she is also my greatest love and I adore her. We have our days, but she is amazing.

I often worry that I won’t remember these days and that I will be missing out on something I actually experienced. Even now I look at her and she is older than I remember, and taller. I have been with her watching her grow and change but my mind does not register what is happening.

Hopefully there is a place somewhere deep inside that stores up all of the good times we have. Even if the memories fade, I just need the feeling.

There is no way to plan for this type of life. I thought I took everything into account but no, I never considered that I would have the issues that I have today. I was too careful. I followed the rules. I prepared for everything. Everything except the unexpected.

Now I laugh at how silly the thought is. Prepare for life. Prepare for life? Maybe life isn’t challenging enough if we can just get ready and slay all the dragons. It is the little deaths and losses that push us to learn what truly matters.

What truly matters is that I spent time laughing with my daughter. It doesn’t matter why we were laughing, it just matters that we take the time to express joy with one another.

My memories of tonight will likely vanish in my sleep, but tonight we grew a little closer and that is foundational. Our experiences won’t fade away or be for naught. They will be the solid ground that our future relationship will be built upon.

The Monkey Sleeps Tonight…And All Day

When I woke up I felt it.  Brewing in the back of my head.  The pain that breaks grown men.  So, I purposely didn’t do much for the morning.  I think by 9 I was done and had to take another nap.  Woke up around 2, I think.  I remember talking to my daughter and apologizing.  we were supposed to do stuff.

Nothing makes you feel like a bad mom like letting your kid down, AGAIN, because your body can’t do anything.  I didn’t even make more than 900 steps all day.  She’s a trooper, but it still isn’t fair to her.  It is unfair to me.  I wasn’t really into motherhood, but when I became a mom I tried to do best by my girl.

My family left around 4 for church and I was still just hanging around.  I made a necessary phone call.  I taped up a box for shipping.  I put my clothes in the wash for my staycation.  I made it maybe until 6.

It is now past 1am, I woke up about half an hour ago.  My whole family (except nightowl teen) is sleeping.  I didn’t get to hang out with the family at church or our nighttime meetings.  I didn’t go for a walk even though that is so important to me.  I just slept.

You know what?

That must be what my body needed, so I don’t really feel that bad, I just missed out on family time.  It’s ok!  I already did my precheck-in and I will be in a beautiful Las Vegas Paradise in about 13 hours.  That’s cool.  I’ll sleep there too!

The Monkey’s Memories

My day has been interesting to say the least.  I slept in.  When I finally got up, I received a call and got my neuropsych exam schedule and the followup exam for that.  I sent an email.  Drank some coffee.  Got more coffee.  See, I lied.  My day wasn’t interesting.  I probably had you going for a sentence or two.

While I did end up going to therapy and to a volunteer orientation, today held no special feeling.  I didn’t even know what day it was when I woke up.  I didn’t know the date until after 3PM.  Some days, I doubt I even know the date.  Everyday is very close to living the same day over and over again.

It’s like driving down the same street every day and everyday something is different but you can’t quite figure out what.  Then one day you finally stop the car and look around and there are buildings and people but all you ever remember seeing is the empty lots.  You have no memory of a town being build around you.  Even though you have interacted with the people and probably gone in the buildings too.

When you make note of all the change going on someone is there to remind you that you are always surprised at the change going on.  Then you sit and think, HOW MANY TIMES HAVE I BEEN SURPRISED?!?!?!?!

I don’t know if English has a word for the abject horror one feels when they are informed that they are mindless living out deja vous. It also has to encompass being washed over in the sadness of knowing you are going to forget this and experience it again.  How sorry you feel for your future self, who will go through all of what you are currently “learning” and dealing with.

Then the next day you drive down that street and just can’t quite put your finger on what’s different.

It’s like being trapped in time, but only your brain parts.  The rest of you is aging and still carrying on.  Brain refuses to move forward.

Today I scheduled my neuropsych exam and basically, it is a test (this one is 3 hours, my last was 8) to help a neuropsychologist to determine how to proceed with treatment for a condition a patient is having.  *I am NOT A DOCTOR so there may be other reason why this test is performed*  My first evaluation was done a year ago and it was an 8 hour series of activities from memorization, hand eye coordination, hand strength, psychological history, speech tests, and lots more.  The test I will be doing this time is shorter and I am told the activities will be a little different because they are focusing now only on cognitive and memory issues whereas the first test was much more general.

That I was able to get into this place is a huge blessing and the doctors seem just as eager as I do to find answers.  We all know it will take time.  I hope we can find solutions because my memory is stuck and I want to get better.  If I can’t get better, I suppose I will blog a whole lot more because I miss making memories.

 

Out Of Monkey Experience

If there is one thing about my experiences over the past two years or so that sticks out at me, it is the overwhelming feeling of being disconnected from my body.  I have always been in tune with my body.  I found out I was pregnant at 10 days because “something wasn’t right” with my body.  I remember the nurse and the OB being surprised that I could notice such subtil changes in my body.

I have always been active and of course that meant a lot of listening to what my body had to say.  I know, or knew, my body.

It is no longer that way.

So much pain has entered and made a home of my body that I have mentally distanced myself from my physical person.  This isn’t the body I know.  I feel like I am in a stranger’s body; as if my own was stolen from me and I woke up to a Franken-body that knows no end of personal humiliation.

The falling is embarrassing as well as it always causes some kind of damage from a skinned knee to a bruised pelvis.  The headaches are debilitating.  The nausea is a constant, annoying companion.  This is the tip of the iceberg because if we swim deeper we see the much more devastating actions my body commits that leave me hating this piece of flesh that wraps me up.

Imagine if you will living your life and all of the sudden you have to go.  Like your whole abdomen bloated with the breath of Satan and the foul demons must be freed.  You are completely normal feeling with no urges, then, BAM!  Impending doom is happening in your colon.  How do you work your life around that type of issue?  My Gastro just felt sorry for me but said that urgency is a neurological problem that he is not equipped to handle.

Of course, it isn’t always THAT bad.  You might just get bladder spasms.  They are like having a broken sprinkler system in your body.  You HAVE to go right now!  Just kidding.  BATHROOM!  NOW!  Just kidding.  I WASN’T KIDDING!  It’s serious now!  Just kidding!  repeat this every 15-45 minutes for 2-20 days at a time.  At home.  At church.  At work.  At lunch.  At night, I sometimes take my CPAP mask off 8 times to go to the restroom.  I get little rest those nights.

Then there is the possibility of your hands losing their strength and fine motor control.  Writing becomes such a burden, however, you will have to write all of the time because you have to fill out medical forms and such.  Work with your hands doing fine work?  Once you get into the groove of doing what you love you will feel the burning pain seeping from our fingertips all the way to your wrists.  Your fingers will slowly stop responding to commands and will cramp into a half closed position until you allow them the time to recover.

It could be something as simple as going out for a walk and the skin and muscle on your legs feels prickly and tingly.  Every time.  Remember though, you are supposed to walk for a certain amount of time each day until the other therapies start so that your body is active.  Maybe you tough it out.  Maybe you divide the walk into two shorter walks so it isn’t so bad.  Of course, it doesn’t need to be said that all of the muscles and tendons in the top of your feet will be killing you and trying to cramp up.

Let us not forget that you could have tinnitus which is fancy speak for “ringing in the ears’ which sounds WAY more fun than it is.  Like, when someone is talking to you, but they aren’t speaking over the never-ending buzzer in your head, so you have to continually ask them what they are saying.  The worst is when you have the opportunity for peace and quiet but your head is so loud that you can’t enjoy such a simple pleasure.

My “favorite” is taking a shower and being bombarded by tiny spikes of pain as I try to clean myself and not hurt myself in the process.  It is most painful in the winter because it is like being attacked by scalding hot water.  Baths however carry their own risks, mostly falling.

These are all things I deal with in my body every day for over two years.  This is but a small portion of what I and millions of other people go through every day.  We leave the house, some of us looking “normal” and some of us with visible aids and we walk into a world that has NO IDEA what happens behind closed doors.  They don’t see what we regularly overcome in order to be able to interact with the world outside of our homes.

For me, going from an able-bodied mom, athlete, student, minister, singer, and volunteer, to being crushed by the gravity of my brain injury has caused a dissonance I have not been able to retune.  This is not my body, this is a nightmare that I am stuck in.  It’s not where I have spent my life.  I feel like my mansion has been replaced with a hovel.  It feels like I am at odds with my body and I don’t want to be this way any more.

I imagine I am not the only person who feels like their body was replaced by a much cheaper version.  So, I am very invested in getting my body back.  Not necessarily my lovely 19 year-old body, but the strong body that I felt I could depend on.  So, I am starting at the bottom.  I walk for about 30 minutes a day, broken up into two sessions unless I feel well enough to walk more.   I take a personal gyrotonics class that helps to stretch my body and we do core strengthening.

I begin music therapy this week and that is supposed to help with relaxation techniques and with fine motor movement playing piano again.  Soon I will begin occupational therapy, physical therapy, meditation therapy, and hopefully a neuro-rehabilitation program.  I will also begin dancing with a troupe after my therapies have started and the schedules are settled.

I share all of this ugly information to let you know that you are not alone in suffering the body that you are in.  For many of us, this journey is long and hard with few rewards.  We lose friends, our family may not understand, and we can feel very alone.  Please know that I may not go through the exact circumstance you are in, but I know what it feels like to be alone, frustrated, worthless, useless, ugly, and probably every other feeling you feel.  I encourage you to make even the smallest step toward self-care and self-love.  Every day I struggle to convince myself that I really need to go for my walk (you see I am here typing a blog instead of walking!!) but when I get done, I feel wonderful and I remember that I am worth every minute of effort and love I put into myself.  You are too!!

The Monkey And The Memory

Today I stopped by the office and on my desk is a picture of my daughter, maybe at 2 years, with her feet up in the high chair, leaning back laughing.  I remember taking that picture.  I remember her laugh and how she could take off any clothing you put her in. She was a free-range baby.

I walked out of the offices and went downstairs to the sanctuary and saw my daughter up on stage.  She’s a young lady, but she still has those long legs and that joyful grin. It catches me off-guard because there is a gap of time missing.  In my head, she is still a little younger, but I am trying to work that out.  Surely I won’t always think that my daughter is 12.

So much of my life seems to pause in my brain in 2015 or early 2016.  I struggle daily to remind myself that this is a symptom of my brain and reality is in the future, not the past.  It’s not just my child, it’s everything.  It can be overwhelming.

The worst part is that I don’t think most people can really understand or appreciate how fragile this makes my grip on reality.  It doesn’t even seem life something important until it is your brain that is not getting the message.  Then it becomes huge and you have to figure out how to deal with it.  I have to figure out how to deal with it.

There are things about our conditions that most people will never be able to comprehend. The best we can hope for in many cases is love and support, and TRUST ME, that means more than anything else.  Sometimes I don’t want my family or friends to understand the mental anguish I deal with.  I don’t want them feeling bad for me.  I go to therapy and I deal with many of these topics because I want to enjoy my family and friends.  I am not a broken lamp they can fix, I am a person going through a rough patch of life but at least I KNOW people love me and care about me.

It breaks my heart to think that there are people who go through this or any illness alone.  I don’t know what I can do to change this situation right now.  How can I help other people form support groups and engage family members and friends?  I have been taking notes and keeping track of what had and has not benefited me in the current healthcare system model.  I want to know how we make things easier for people who have been through brain trauma to be seen by higher level specialists for intervals starting directly after the incident that caused the trauma.  If I had seen memory specialists two and a half years ago, would it be as bad if we had intervened?  I am just one person.  How many other people share a story similar to mine?

I am going to find my platform and when I do, I am going to keep screaming from it until things change.  I want to be the agent of change in this world.  I want doctors to listen to patients and what they are really saying.  I want patients to feel comfortable advocating for themselves because we have to be at the helm of our own health.  I want everyone to feel like they are important to not just the doctor but to family and friends.

Monkeyologist Visits Are The WORST!

**WARNING: This post contains real life situations that I shouldn’t even need to put a warning up for, but people have grown kinda soft. **

So, recently I had the wonderful experience of peeing on myself in the kitchen.  I have have even mentioned this, possibly written an entire blog post, but here we are.  I kinda spaced out and it happened and life went on and I called the urologist.

As usual, went with my mom and had to go through the whole ‘try to pee in the cup’ thing but this time, I couldn’t stop peeing and I bet that made someone’s life interesting.  I wiped everything as best I could.  Really, I just can’t see over this chest I have and have to pretty much guess what’s happening and it is usually to my detriment.

Anywho, I was prescribed Myrbetriq.  Apparently this is a newer class of drugs that help control bladder spasms without the side effect of peeing on yourself (it is a literal side effect of the medication I was on) and I was so excited until the pharmacy called and said they couldn’t fill it because I hadn’t taken all three of the recommended medications.  Last time, they said I couldn’t take it because I hadn’t taken both.  In six months they managed to add a third one to the list.  It was the SAME one I was on, but extended release.  So there was a possibility for a longer portion of the day that I would have an accident.

Well, I had no choice but to at least try it.  As soon as I picked up the prescription, the insurance approved the Myrbetriq.  I was so thrilled.  I picked it up, and after a few days I called the urologist’s office to let her know how it was working.  They didn’t even know it had finally gotten approved!  So I let them know so they could put it in my record and I love this prescription.  I have not experienced any noticeable side effects and my bladder is functioning more normally.

I can tell when it wears off because I have to pee every ten minutes, but it is an extended release and works for a very long time.  This is one of those things that I don’t often share with the people I know personally, but I share openly here because this has probably happened to someone else and they have weird feelings about it.  We only have so much control.  When a medication takes that modicum of control away, it can be self-devastating.  For me, I am watching my body do weird stuff, this just was too much and I am glad we were able to control it.

Neurological problems often affect the urinary and digestive systems.  It isn’t strange that any of this should be happening, but not because of the Chiari, something else is happening and that is what we are on the hunt for.  We are trying to find out what is causing my body to go mad.  So far, it has been a wild ride that involves many ups and downs.  They say it’s the journey that matters, and right now the journey is wearisome. I believe that we will make it though.  With faith, family, and friends, amazing things are possible.

However, my age makes it harder to get doctors to listen, but again, I am my own advocate so if you didn’t hear me I will just speak louder until you respond.  This is how I have managed to deal with doctors and such so far, and it is working.  Keep calling.  Keep finding your paperwork.   Keep your file out enough that doctors know you and be a good patient.  Don’t argue with a doctor who has years more experience and probably vast quantities of specific knowledge that you can’t imagine.  Do ask questions, though, so you understand why something isn’t how you thought.  Good doctors are willing to teach their patients so that they can more easily work together to find viable treatment options.  Be kind and respect the knowledge that your doctor has and I promise that you will gain insight into things.

Understand that high level specialists tend to be aloof.  They have their heads in very high places of knowledge and when they are with you, they are listening to what you are saying and comparing it against a vast background of knowledge, experience, and theory to come to a reasonable conclusion about what is happening with your health.  They are not looking at general things, they are often looking at what specific things in their field match the set of signs and symptoms they are given.

My neurologist barely even looks up from his computer when we are talking.  He is making notes about what I am saying how I am phrasing it, how I look symmetrically, and when he hears something that catches his ear, he will begin an intense line of questioning while furiously typing our responses.  Still, part of our visit involves just talking and explaining how the symptoms are progressing and what the next step in the plan is.

I look forward to seeing him.  I admit, I just want answers, but he’s a pretty cool guy I just hope we are able to get somewhere and not spin our wheels.  We’ll see how all of that works out.  Keep positive because even the bad sides have good points and the lesson is not just about getting through the obstacle, but getting through it with grace and tact, and being a kind person in the process.  I’ll let you know how this works out!

Monkey Problems Disappear

Life has been hectic. The holiday season brought all kinds of work to do and my doctors visits were getting out of hand. 5 visits 4 days a week, and any special appointments on top of that made it difficult to do anything but sleep and prep for the next visit. On days I didn’t have appointments I had dance class and I have a home routine for physical therapy twice a day. Plus a walk to get my blood flowing. And boiling eggs so I could take another new medicine.

Now, I have thinned out my appointments, but I still have physical therapy twice a day and dance, and class at church has started back. So, I am reading through about Solomon and his achievements to make a study for class for Ecclesiastes. This is so difficult now. I did not appreciate how easy it was for me to put together a study. Now, I am a stuck slogging through, but I will get it done.

I find myself with moments of time that I know I can find a better use for, but I keep wanting to go to sleep. These headaches make it almost impossible to see and even understand what I am doing. So, maybe tonight I will listen to the Bible instead.

I have found that my energy level changes drastically with the weather, with my hormones, if I am sick. Do NOT feel bad about taking time out of life to care for yourself. I think that it’s like the oxygen masks on a plane.  You put yours on first and THEN help others.  At first I had to learn how to not see it as a “problem” that I was causing or needed to be solved.  Some days I am able to do more.

On days where the couch is my home, it is because I am resting my tired body.  I am not being a problem by not helping around the house.  I am staying out of everyone’s way and not knocking things over.  I am giving myself the rest it needs to do a good job when
I am able.

Once it isn’t a “problem” then I have nothing to feel bad about.  I just have to listen to my body, like everyone else does!  My body happens to take more naps than the average body similar to my own.  I have taken four naps in one day, but the sky is the limit.  Beat my nap-time score if your body needs the rest and be proud that you finally learned how to take care of yourself!!!