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

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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!!

Rediscovering The Monkey

I had made the incorrect assumption that I would be back to work after my brain surgery and back at school and all of my other activities.  So many activities.  When it became clear to me that my neurosurgeon, neurologist, or PCP wouldn’t sign paperwork for me to go back to work or school or anywhere, I fell into a deep, dark depression.  I felt like my whole life had disappeared and I had been given some sort of joke consolation prize.  Not a funny joke.  A cutting joke.  The one you know is true but it really isn’t funny.

I deleted everyone on my Facebook.  I was tired of their smiling faces on vacation or out to dinner again.  Complaining about going to work or having to pay bills.  Living their lives or their lies, whatever they posted.  Something kinda broke inside.  I realized that I was comparing my life to people who are on the internet, but the only way I would stop looking is to delete them.  So I did.  I think I got off of instagram for a minute, but I didn’t delete anyone, I mostly like cakes and nails and fashion.

I spent all of my new productive hours going to the doctor getting referrals for every symptom and having every doctor tell me it is neurogenic.  I was just collecting medical evidence.  Halfway through the year, I began seeing my therapist.  I felt like it was a full time job going to all of these appointments and making sure referrals were sent and tests were scheduled,

In November and December of 2017 I had my last visits with my PCP and my neurologist.  My PCP noticed my tremors and for him that was enough evidence to make the referral to the Cleveland Clinic.  My Neurologist told me that whatever is wrong with me is way out of his league but I can walk, I can stand, and I don’t need a wheelchair, Merry Christmas!  For him, that was the best news he could give me.  He sent a recommendation to my PCP to see the Cleveland Clinic, just like all the other doctors.

Now I am a few months into the new year and I am restless waiting for this appointment that I made maybe a month or two ago.  I have a little over a month left and at this point I am no longer fighting for people to listen, I am no longer in a testing phase, I am just waiting.  It has awakened many anxieties within me and I deal with that in therapy a lot.  It has gotten much better.  The more I realize I can only control myself (and not even that sometimes) the easier it is to accept whatever else is going on in the world around me.  Sounds like a simple concept, but trust me, it is anything but.

I am not who I was before.  I can’t do the physical labor, I don’t have the same mental stamina, my memory is kinda shot.  I can’t go back to the before time.  I have finished my crisis time where I was trying to get to the land of answers.  It kept me busy although it was an emotionally tough year.

Then 2018 comes and who am I now?  I am not zealously calling doctors.  I am not slinging boxes for a living.  There is no going back to any of that.  I am moving forward, but who am I?

I feel kinda like a mannequin who hasn’t been painted yet.  I feel very much like a blank canvas which is crazy because I have usually felt more vibrant and already created.  I have the chance at reinvention, but what do I want to be?  I feel like I shouldn’t answer that until I know more about what is going on with my body.  If I had to decide right now, I would say a beacon of hope to the hopeless and forgotten.  That feels like it will take some hard times.

Funny thing is that right now feels just like hard times, so maybe I am in the process of being moulded into the new me.  As someone who works with clay, I have often imagined what the clay would be thinking if it had feelings.  I enjoy polymer clay and so I send it through the pasta machine 20 or 30 times, then roll it and poke it, stretch and compress it, I make it bend to my will.  If it could feel, I imagine it would be torturous.  However, at the end of the project there is a beautifully sculpted piece of work that probably doesn’t look anything like what it has actually been through.

Maybe that is where I am.  Being run through the pasta machine, kneaded, shaped.  Not a bad place for me to be, or any of us really.  It is the rough times that remind us why we are beautiful in the end.

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.

The Monkey And Her Girl

Tonight I took my evening stroll but this time I was accompanied by my daughter.  It was a little awkward.  I usually take walks and hikes by myself because it allows me to explore my mind, but I offered her the opportunity previously and tonight she asked if she could join me.  Of course I agreed.

I don’t have the best self-image right now and my daughter is aware of it and I can see the concerns about her own self-image growing so I am trying to make sure that she knows I support her wholly.  I mentioned that I take the walks because they just help me feel better.

My biggest goal is to pass on the mentality that she is the one who is in control of her body and she should love it not because of how it looks but because it is hers and it allows her to function.  I don’t want her to feel victimized by her body or powerless to change it in whatever way she wants to (within healthy limits).

This is a good enough reason to have an awkward walk with my daughter.  I know they will get more comfortable as time goes on and hopefully it will be something we do for years to come.  I have had so much going on with my health that it can be difficult to focus on her.  Sometimes I feel overwhelming guilt or shame that I am not able to do what the other moms can do, but I can’t let that stop me from forming an even closer bond with her in these teen years.

I want to empower her in every area of her life.  She is an amazing person who has taught me more about myself than anyone else.  My health has overshadowed important years of her life and while I can’t change it, I can put as much effort as possible into making our time together count.

If you

The Lazy Monkey

There is a perception that people with invisible illnesses are lazy. I never gave much thought to it until I was the person being called lazy.  I don’t work and I live with my parents.  I don’t pay any bills.  People see the outside of my life and assume I am just living the high life.  If only that were true!

There are days I open my eyes and I know before I even sit up that I am about to have a bad day. There are times when I feel awful but I have a funeral to do or some appointment I HAVE to go to.  Going out into the world with a headache is a nightmare.  Everything is stupid.  Everyone is stupid.  It’s just, I really have a strong dislike for everything that exists when my head hurts.

So, I try to stay home.  I nap.  I can take 3 naps a day or I tan take 1 13 hour nap.  I do this for days.  As long as it hurts.  Somehow, what other people see is, “Michelle is taking ANOTHER nap while the rest of us have to work.”  I get it.  I can see how unfair it is that everyone didn’t get brain surgery.  I hit some sort of lottery where I may never have to work again, but neither will my brain or body!

I USUALLY don’t lift heavy items, do dishes, vacuum, or sweep.  While it may seem like I am “too good” for manual labor, I actually have a weight restriction because I have a patch on my dura.  So, excess effort, being bent over, or falling can cause me some serious injury.  Even cooking and food prep are getting hard.

I just want you to know that if you are being singled out by someone who thinks they know what’s up, don’t be afraid to stand up for yourself.  You don’t have to tell all of your business, but let them know that you have business and it isn’t theirs.

If you are the one who finds yourself calling out the perceived abuse of facilities made to be accessible to everyone, ask yourself: is this is any of my business?  do I personally know that this person has no impairments or am I just being righteous?  will anyone suffer or be denied access because I feel like this other person is abusing the system?  will I act shocked or offended if they provide proof of impairment and embarrass me in  front of every one?

I am just saying, it is not my place to tell you what I think is wrong with you.  It is not your place to tell me what you think my health condition is.  Sometimes I put on makeup because today might be the day someone says something crazy and I need to look good in my mugshots.  Just playin’, seriously though, stop judging people by the way they look.  Many of us hide our scars so we can feel a little more normal, we don’t need to be called out.

Monkey Say Wha?

So, one of the most interesting parts of my journey is seeing how my cognition has been affected since the accident and since the brain surgery.  Memory is fairly touchy, I can remember things that have a strong emotional impact, I can expand upon many theories or concepts that I know,  but I have trouble remembering my right and left or what I have done recently.  Yet it is the thought patterns and changes in them that interest me the most.

Why can my brain just not function sometimes?  Why do I call things by different names?  Why do I type the letters of a word in the wrong order now?  Why have I started spelling things according to the rules of various languages?  Why will I grab the handle of a pot I have been cooking with for an hour with my bare hand over and over?  These questions fascinate me.  There are dozens more.  Some deal with other stuff, but most deal with why my thinking even feels different.

One that is definitely the humor gem of the family is that I hear something completely different when people are speaking.  Someone could say they have cheese, I hear they spread fleas and now I have to verify some information.  A lot of people will just repeat themselves, but my family always first asks what I  said and we usually have a pretty good laugh.  I often hear inappropriate things.  I don’t know what that says about me or my brain, but whatever.

By far it is the funniest malfunction I have right now.  The thing is, I live in a world of miserable symptoms, unending pain, ongoing nausea and at some point I am glad we found a problem that is great to laugh at.  My family is under a tremendous amount of stress dealing with me because my condition can rapidly change from ok to ER within hours.  I am glad they are comfortable enough to find some non-hurtful humor.  We laugh together and it diffuses the tension I feel when I hear something crazy.

I also say a few crazy things also. I may have covered that.  Maybe not.  Might again.  I have called the oven the hot fridge.  Tonight I called my calzone a crustacean.  My daughter was surprised at me, but it’s because she can’t figure out why I would call it that.  Well, hopefully we will find out, right?  Maybe by the time this publishes, I will know!

People think that the decompression surgery is a cure and wonder if it went wrong.  No, it has prevented further damage to my brain and spine.  It created a larger space for fluid flow.  Technically, the surgery was a physical success and I am happy with the work of my neurosurgeon and his team.  He was very explicit when he explained possible and probable outcomes.  We were hopeful but aware that there could be issues.  However, we went through the process and recovery by the book.  We followed the rules, doctor’s orders, physical therapy, but things didn’t get better.  In fact somethings were already showing decline.  The neurosurgeon was not pleased with the outcome, but this is not his area.  He referred me to the Cleveland Clinic in June of 2016.

Then I had to find a new PCP because my insurance changed because no one would release me to work.  Then I had to find a PCP who listened to me.  It took one year, 14 doctors, countless tests and images, and my PCP to actually see me having tremors to get enough evidence for my insurance to pay out of network and then to get the prior authorization approved.  So much stuff and adulting involved.

So I am glad that we have something we can laugh at as a family.  This process has been draining and emotionally burdensome so just like when my brother died, we will laugh in the face of our fears and worries.  I encourage others to do the same.  Obviously, if you are super sensitive this is not the exercise for you, but if you can find something about yourself to laugh at with another person, it makes things not so bad especially if they also have a funny quirk or issue they are willing to share with you.  Of course you must remember that this is not for the general public.  This is not about embarrassing each other, it’s about private moments of camaraderie.  Strengthening your bond by laughing through the hard times.

 

Monkey Countdown: T minus 9 days

I spent my whole day at church today.  Bible study was the order of the morning and then I had a meeting with a family to do the program layout for a memorial service, went for a walk, got some pizza, ate too many donuts, went to evening service, and came home to a hot cup of coffee.

This service is on the same day as my visit to the Cleveland Clinic and I expect that it will be a tiring day.  I will be up quite early in the morning to prepare for my visit.  I will have just enough time to enjoy a few cups of coffee and some breakfast before heading up to the church to prepare for the service.

I think about what I am going through and I look at what this family is going through and my heart breaks at the many different kinds of pain people must endure.  Having these two events on the the same day offers some comforts to me, even if that might seen selfish.

I am beginning a new journey, it might not be easy or fun, but I am at the beginning whereas they will be closing a chapter of their lives.  I am at the end of my mourning period where they are at the beginning of a road that will get very dark sometimes.  It seems callous, but you learn to count your blessings, often through terrible circumstances.  Every victory I achieve allows me insight to help someone else in the future, but it also makes me thankful that I did what needed to be done to learn what I needed to know.

As the days get closer, I am just more and more ready to get this thing going and to learn some brain stuff.  I can only imagine how awesome the insides of the buildings are and what kinds of sophisticated equipment they must have.  They can probably read my thoughts.  Who knows?!

Anywho, that’s it!  I think I might be able to say I have conquered my anxiety related to going to the clinic and it feels really good to not be burdened by overwhelming thoughts.  So, hopefully tomorrow will be just as carefree!

Monkey Countdown: T minus 11 days

The world is moving at such a rapid pace!  A new week is already going, we are over a week into a new month, and I am just in awe of how quickly time seems to move while how slowly it seems like my life is going.  At church today everyone was asking about my upcoming appointment.

Everyone knows that it is fairly soon and many people know how long I have been trying to get to this particular place.  It is nice to have the thoughts, prayers, and warm wishes of the people around me.  I don’t know how anyone can make it through this process without a strong support system.  Especially because the brain is involved.

At this point I am just kind of excited about going and getting through this portion of my life.  I don’t know if this is just going to be for a while or if I will be a patient there for life.  Surely at some point things will begin to change and then normalize again, in a new normal.

Looking back, that is what has happened after every major event and change and I have no reason to believe that this will be different.  Maybe that is the secret for me to overcome many of my own anxieties is to remember that in the past I have been through a similar event and even if it was uncomfortable or disagreeable, I made it through and I learned something in the process.  Maybe I don’t give myself enough credit for making it through those tough times.  I don’t want to spend my life in constant fear of what comes next.  Now is the time where I figure out exactly how to overcome the fear before it becomes crippling, requires therapy, and personal writing projects.  I will definitely share the answer when I find it!

Monkey Countdown: T minus 13 days

I spent the first half of today sleeping.  I regret nothing.  I was just tired.  I felt a bit of a headache and my mouth hurt so I went back to bed around 10am until maybe 3pm.  Then my mom wanted to go get pedicures and go shopping.  (Yes, I think we shop a lot too, but we usually just picking up a thing or two, nothing crazy.)  Anywho, she has been under a lot of stress so, I am trying to do the things with her that help make her a little more cheerful and she liked the pedicure.

On the way home we talked about the visit to the Cleveland Clinic and I explained my hopes and fears to Mom and I told her why I was doing this writing experiment.  I was a little surprised to learn that she reads some of them.  So she knew I was doing it.  I told her my views on how I think people misunderstand anxiety, or at least my own anxiety and how it can be made better.

I have to admit that the most satisfying part of this conversation was that my mom was listening to me and not telling me why I am wrong to feel the way I do or why other may misinterpret how I feel.  I love that she will listen and give thought to my word in the actual context we are working in.  I wish I could find that in the world at large.

She listened as I explained how the mechanics of my thinking have changed since starting this exercise and to hear it out loud was good because that means I can explain it to my therapist and she will probably understand what I am saying.

Really, having that talk with my mom relieved a lot of anxiety.  She isn’t trying to belittle my condition or my feelings and she doesn’t make me feel bed because I go to therapy.  That is the most comforting way to resolve anxiety in my opinion is when my family hears me and reassures me that we are in this together.

Monkey Countdown: T minus 14 days

TWO WEEKS!

I can’t believe it!  I am bursting with feelings about it!  Mostly excitement.  A little bit of apprehension.  I wonder what it is going to be like.  I wonder if I will have a headache that day.  Or if I will be having a good day.  Will it be hot?  I don’t do well in the heat.

Something tells me this isn’t going to be like all of my other doctor visits.  My biggest hope is that we will be able to diagnose and treat whatever is going on with me.  My biggest fear is that they will not be able to help me and I will have to go to an even more specialized medical institution that is far away from home.

Still, I have a lot of faith in these folks.  All of my doctors do too.  So until they tell me otherwise, I am going to believe that we can handle all of my problems right here in Las Vegas.  They have helped a lot of people and hopefully I will one day be counted among their ranks.

One of the things I do look forward to is having my family with me as I go on this Brain Adventure.  The building is beautiful with a very nice memory garden and while it may not be the most ideal circumstances, I will be able to enjoy it with the people I love.  In the end, no matter what happens, I am truly blessed to have a family that sticks with me through the thick and the thin and the medium viscosity times of life.  I know there are so many people out there who don’t have this type of support system.  My heart breaks for them because this is a hard life to live.

I hope that my time at this clinic opens up doorways for other patients who feel like they have no hope or feel like no one can understand what their brain is doing.  It can get very lonely inside of your head and when people don’t understand why you are now “different” you feel isolated.  Add a litany of medical problems to that and now the doctors don’t get you either.  When my neurologist told me I needed a sub-specialist in neurology I began to understand how deep the rabbit hole was.  I thought he would have the answers, but he said that I needed doctors that specialized in different areas of neurology, who did more focused training.

Those are the doctors at this clinic who will be assessing my brain and behaviour.  They are the sub-specialists who know more about specific parts or functions of the brain.  I really look forward to meeting them and learning as much as I can about how the brain works.  I will say, that is on of the positives for my personal journey is that I have always been interested in the medical field so I love listening to doctors and nurses talk in their jargon and I can’t wait to see it specialized in the neurological world.

So I guess those are my thoughts if the day.  Nothing too serious but definitely excited, so that’s a win for the day!

Monkey Countdown: T minus 15 days

Time has just been marching forward.  It doesn’t feel like it, but I can see the evidence of it in my list of blog posts.  I don’t know how I managed to make it this far into the year and yet I still feel like I am in a different year.

Today has been a pretty slow day for me.  I have been tired all day.  I took a nap, but that didn’t help.  Had coffee, but that didn’t help.  Exercised and that didn’t help either.  Made me more tired I think.  I am trying to not over-exert myself.  I have only had a fullness in my head and some symptoms.  My favorite is nausea, of course.  Not.  I am trying to be mindful of what I do so I don’t aggravate my head.  Typing this seems to be the most irritating thing I have done to my head all day.

I am glad I haven’t been feeling the high-level anxiety that I was when I began this countdown.  That isn’t to say that I don’t have any anxiety over it or that I never think about it, but it is not affecting my life and that was the goal of this whole thing.  To alter my thought patterns so that I could channel my anxiety about this into something positive.  It is not a perfect method.  I AM NOT A DOCTOR so I can’t say it will work for anyone.  I am just sharing my own progress with my own problem.

This is where I had hoped to be at this point, so that means I am moving forward.  I may have a few bad days between here and there, but that doesn’t erase progress.  I hope that each of us can find a way to conquer even a small fear this year.  It’s good to be victorious over something you thought had power over you.  With that thought, I will go drink some coffee.

Monkey Countdown: T minus 16 days

Despite all of the odds, today I had a pretty good day.  I got some new shoes, did some shopping with mom, went to church.  I felt great all day, but at church I got the familiar tingling or electric sensation down my left leg.  It wasn’t very strong, which is good.  It often stays at the intensity it started at.

I began questioning whether I should go to the gym.  It has been a minute and I have missed it.  Since my head wasn’t “hurting” I decided to do a low intensity weights/cardio combo.  For me that means no more than 20 minutes of each and lower weights than normal with more reps and slower pace at whatever cardio I am doing.  I am a weight lifting junkie and if I don’t set rules I will be trying to set a PR every time I go to the gym,  I enjoy getting my stress out physically, but right now my body is just so weird.

I made it through my leg day and sat down to cycle for an hour.  Then, about ten minutes in my feet are super uncomfortable.  They are starting to feel numb.  I keep pushing because I rule this body, but by 20 minutes, my feet were burning, but that was all they could feel.  So, I stopped in defeat and waited for sensation to return to my feet again as this warm feeling began to travel up my ankles and calves.

It wasn’t until I was sitting at the gym that I thought about my visit to the Cleveland Clinic and began to wonder if they have even heard of such bodily behaviour before.  surely they are used to getting the most odd cases.  Are they used to a patient who has lots of weird symptoms?  What if they think I am crazy?

I am still thinking about all of this and kinda looking around me to see what I can focus on that will take my mind off of how I feel like a medical oddity.  I see nothing that catches my eye.

This is the worst kind of anxiety for me.  Post-workout anxiety.  All of my energy is already gone, so this isn’t really helping me.  I am thinking that in this case, going to bed might be the answer.  I’m trying it out, guys!  Goodnight!!

Monkey Countdown: T minus 18 days

Yesterday was Easter or Resurrection Sunday or whatever it is you personally called April !st, 2018.  I enjoyed a morning at church and spent my early afternoon with a friend doing some volunteer work.  Then I spent the rest of the day with my family (sleep) and I didn’t make myself write because of the holiday.

Today I woke up after sleeping for eleven hours and while my head feels full, nothing really hurts.  I am a little tired, but it’s not too bad.  I have enjoyed my day.  Everything has seemed muffled but it is not unpleasant enough to kill my mood.

I think this is the way i would like to feel every day.  I can live with uncomfortable.  Today I didn’t think about the Cleveland Clinic at all until a notification on my phone for WordPress came up.  So, I suppose lacking much anxiety to speak of today, I will tell you that I am just thankful to have a day where I can relax and feel good about health for the day.

I really hope tomorrow is a good day too so I can make it to the gym.  Tonight, I will do some stretches, but I think that Just going for a walk might do me some good.  Tomorrow, I would love to get out and hopefully enjoy some sunshine!  Many other days I dream about having days like today.  I didn’t do anything big or amazing, I just lived a day without feeling awful.  That is my beautiful thought of the day!

Monkey Wisdom

*Warning, parts of this post talks about the aftermath of nasal surgery.  If you have a weak stomach, please gird it with courage and com back and read.

For many of us, once we learn a ‘thing’ we want to share it at every opportunity.  In October 2011 I was diagnosed with a “raging ear infection” as my PCP described it.  I was in there because I hyperextended my knee and it made noise, so now I had two significant issues.  I hadn’t felt anything in that ear until that night when I woke up in the middle of the night.  If felt like my eardrum had exploded and all  I could hear was a loud, high-pitched whine (raging tinnitus).  I went to the emergency room because the pain was unbearable, they gave me medicine to help calm the pain and I had good insurance so I didn’t need a referral to go see an otolaryngologist.

For six months I battled infection after infection, ended up having to get a CT scan of my sinuses and we found the problem.  I had a deviated septum that was blocking my eustachian tube and preventing fluid from leaving so the fluid was hardening.

I was on all sorts of antibiotics that they changed every 20 days, and steroids, and pain medication, but I went to school and worked and made it through.  Now, as I am going through this, people are freeing giving me their unsolicited advice about how to stop an ear infection, not realizing I had a deformed body part causing the problem.  Drink chamomile tea, warm compress, ice, olive oil drops, alcohol, and some other more painful things.  At the time, this was my first surgery and I was not used to the attention and I was trying to be nice and listen to everyone.  Their mom, so, brother, sister’s best friend’s roommate’s dad with the twin suffered from constant ear infections, and these were their healing methods.

A Christian myself, I just prayed God give me a good doctor who knows what he is doing because I am a singer and I need my nose and ears to work properly to sing.  I had an amazing doctor.  I got a submucosal turbinate removal, which is where they cut some extra bone out of your sinus turbinates which direct airflow.  They made a wider airpath, I suppose.  The bigger deal was the rhinoplasty (or I suppose septoplasty).  They took my septum out, and used it to rebuild my whole nose.  I basically got a free nose job.  Everything was even and nice, but my nose didn’t look different or make me look different.  I could breathe, I could sing, I gained 3 notes, and most importantly, there were no air leakages or infections.  My prayers were answered.

The recovery was disgusting.  My sister had to clean bloody mucus from my nose every few hours, and there was A LOT!  Once, we were talking, and I bent forward too much and blood just started gushing from my nose.  I learned to do everything for a while with my head facing forward.  My sister tired of cooking me eggs and bacon three times a day AND making me smoothies.  I am a needy girl.  It was not ‘roses’ is what I am saying and I gained many insights into how to help here to do this or stop that.

What I ended up learning through that and the subsequent tonsillectomy and decompression is that if someone wants my advice, they will ask.  Most of the people around me know what I have been through, they know what I have suffered.  So, when people are telling me that their child has an ear infection, I as if I can help and have they seen their doctor.  Just to be sure it isn’t something serious.  Other than that, the person probably just needs to feel unburdened and you can carry that load.  Just listen, encourage (not by throwing Bible verses!!), and offer support.  It’s that simple!!

People knew I had an ongoing ear infection, but they aren’t able to understand the medical explanation behind why because most people don’t understand anatomy and how body systems work together or can affect each other when in proximity.  People hear “simple ear infection” but in reality it is “congenital deformation causing pressure on another body system now causing failure”,  After the surgery (which also involved putting a tube in) I had to take ear drops that liquified the gunks that had gotten stuck in my eustachian tube.  A warm compress wasn’t going to help that.

All this being said, open your ears twices as often as you open your mouth and you will be surprised how helpful you are to people.  Open your arms before you speak unknowingly.  Accept what you see because you will never see the whole picture of anyone else.  Just love people.  Advise them when they ask.  Let them make mistakes.  Let them learn pain so they learn comfort and compassion.  If they choose to never learn, sometimes you have to walk away and learn the lesson, whatever it may be.  Aspire to love, everything else will work out.

Also, check out stick figures of myself in curious situations in life at Chiari Conversations, You’ll be glad you did!  So will I!

Monkey Countdown: T minus 20 days

I have had a relatively quiet day.  My head had hurt bad enough to prevent me from being able to think at a higher level.  It is a blessing in disguise because my brain cannot find the ability to be anxious unless something major happens.  Thankfully, that wasn’t the case today.  I had a headache that vacillated between a 4 and 6.  I don’t know what everyone else’s pain scale is but for me that is like between “barely functional” and “I CAN’T HEAR YOU OVER THIS PAIN SO SHUT UP” and that can be a tough place to spend the day.  It is hard to have anxious thoughts, or really any thoughts that are useful in this state.

Instead, today I have felt resigned.  Resigned to being a medical abnormality that my doctors are afraid to touch.  Even urgent care and ER doctors are wary of dealing with a neurology patient.  I lounged around the house, no room or position able to relieve the pain, knowing that the pain was just going to stay until it was gone.  It could be hours.  Days. Weeks.  How long will my spine burn?  Until it stops.  How long will my leg hurt?  Until it stops.  How long will I feel sick?  Until I don’t.

This was a difficult concept to come to terms with.  I remember the first headache that lasted a few days, I was taken aback that such a thing was possible.  The headache I got at the end of September 2015 didn’t go away like the other headaches did.  No matter how much Norco I took, or Tramadol, and I made it four weeks before the headache was so bad that I laid down on my sister’s sofa and didn’t get up again except to go to the doctor.  Everyday I was introduced to a new thread on the screw of pain that seemed endless by week 7.  Week 9 I had brain surgery.  For 9 weeks, I learned that the pain will stay as long as the pain will stay and there is sometimes nothing you can do about it.

I spent a lot of time in my happy place.  I embraced the pain and learned to live with it, even if I couldn’t do anything but blink.  Today, I had times where the pain reached a place that scares me.  I don’t want to end up in the ER again.  So I just lie still.  I put the fan on my head to keep it cool.  I pray that it doesn’t get worse.  Today I didn’t get the ice pack.  I didn’t even care enough.  The pain was enough to where getting up simply wasn’t an option.

Finally, the pain has eased up enough to allow me to brew a pot of coffee and to come to the keyboard and type this out while listening to some great music (Africa by Toto among others) and even as I sit here it is like being hit in the head with a 2×4 repeatedly at irregular intervals.  Nothing like a surprise, right?  I can tell it’s bad, I have been here for about two hours and I have less than 600 words.

Still, I am glad I remembered to type this and while it isn’t about anxiety, it is about a replacement emotion.  I don’t have the energy to expend worrying about things.  I have accepted that this is painful and is going to be so.  It makes me a little sad, a little angry, but most of all, it makes me feel empty.  There is no energy to spend feeling things because I am feeling the enormity of this headache.  It is truly magnificent still, I wouldn’t wish it on my worst enemy.

Monkey Countdown: T minus 24 days

Today I had therapy and my therapist asked how this little project was coming along.  I hope someone somewhere has gotten something useful out of it, but mostly done it was done so that I could get something out of it.  I brought her a copy of one of the entries and she seems happy with my progress.

I think that she is happy that I have stuck with it because it giving up is always so easy to do.  Especially on those days when I don’t feel good (like today) or I sleep for a good portion of the day (also like today).  There is also the risk of inflating the anxiety I suppose, but I feel like I have approached this in a healthy way.

Today we spoke about how I felt with the appointment coming up in less than a month.  Really, I am excited to get to this part of my journey.  It’s been so long that I have just gotten kind of weary.  Still, I told her that my expectations have calmed down to realistic proportions.  Our first meeting will probably be formalities, histories, psychoanalysis, and then laying out a plan for imaging, testing, and then hopefully an upcoming diagnosis.

I told her that helps me feel better because I probably won’t be getting a diagnosis on my first visit and that takes a lot of pressure off of me.  I don’t know why, but it does and I am glad I have been able to work through it and look forward to a productive first meeting with my new neurologist.

This doesn’t mean I am quitting, of course!  Anxiety has a way of going around the corner and sneaking back up on you, so I am going to stay mindful of why I am going to the Cleveland Clinic and remind myself daily that it is the beginning of a prosperous relationship that will open doors for other patients with Chiari Malformation and issues with their brains.

For everyone who has stuck with me, I appreciate it.  Just 24 more days and the new journey begins!

Monkey Countdown: T minus 25 days

Something about speech therapy makes me think hard about what will happen when I go to the Cleveland Clinic. We deal with memory and since I know that will be a focus at the clinic, I think about how they will approach it.

I wonder if any of the therapies they use will be emotionally brutal.  Sometimes you have to push yourself to the brink to see results.  Will it get to that place?  Who knows!

Still, the anxiety isn’t what it used to be.  I have no doubt that the road ahead is going to be tough no matter what it involves.  I think the biggest fears come when you have been let down at crucial moments and then a crucial moment is on the horizon.  You think about everything that ever went wrong and apply it to the new situation.  You do your best to steel yourself but you go overboard because you don’t even know what you are up against.

It becomes too much.  It is all consuming.  You get caught in the hurricane of possibilities and hope that you can ride out your storm before you are damaged beyond repair by the angry whirlwind of thoughts that have spiraled out of control.

Today I find beauty in being able to see when things are getting out of control and why.  I have grown enough personally to see and begin to understand when I am not thinking in a healthy pattern and that is having a very positive impact on my life right now.  As the date draws closer, I feel more excited but not as scared as I was.  I expect that whatever happens, big or little, good, ok, or bad, I will get through it even if it hurt for a bit or I don’t understand it for a while.

 

The Monkey Boss

I like doing a lot of things.  Just to stay busy.  Keep myself out of trouble.  Obviously my most important job right now is being a mother to a teenager.  I have been through a lot in my life, but there are days I pray for a meat grinder to put my hand in cause one day she is going to roll those eye and next thing ya know, they are rolling on the floor.  Still, she is a great young lady and for the most part I can’t complain.  When I get really annoyed with her, I just brush my hair over into a fringe, flip my head, and say ‘whatever’ a lot.  She gets the point pretty quickly.

It is hard being her boss.  I have to love her, but on the other hand, I am not allowed to beat her down, so it takes diplomacy, help (A LOT OF HELP) from my family and things work out.  Now, I am working to get my business back up and running.  I am now my own boss.  It seems great at first.  No one can tell me when to get up…unless I want to be broke forever.  No one can tell me my hours…unless I want another fruitless week.  No one can tell me what to wear…unless I want my high-end customers to see me in my pajamas.

I have become a terrible employee.

So, last night I went back to the basics.  I opened Excel, made a 7 day 24 hour schedule and started marking off the times that were taken for things.  Sunday is my Sabbath, I do not work unless it deals with human life, or I suppose animals life also.  Every Tuesday at 1430, I have a therapy appointment.  I keep that very consistent and have for many months now.  Thursday mornings, Alex has school from 0900-1200, I could use that time just for designing depending on what else is going on that week.  Luckily, Saturdays are WIDE OPEN and that is great to have the time to actually put a piece together and have time for rest breaks.

I suppose the flip side of this is what happens with my involvement with the church?  I have been as involved as I can be for years, but after a year in the new office and always being stopped from doing what I do because of my physical limitations, what is the point of staying in my position?  I’m not paid, so it isn’t life they would have to worry about anything.  Plenty of people are dying to climb the church ladder and live in the executive offices, of course with no knowledge of the sacrifice.  The realest part is, I no longer want to be surrounded by people who know what is wrong with me.  I don’t want to be asked how I am doing or feeling anymore.  I don’t want anymore advice.  I just want to do what I love, get paid for it, pay taxes, and go on about life.  I can come to church on Sundays like 98% of everyone else.  I know how to study the Bible.  I have Christian friends.  I can go to Wednesday service.

Still, doesn’t feel right to walk away from the ministry.  Not without someone being there to pick up the slack.  Isn’t it funny to see a Christian wrestle over what is more important, running a business or being in ministry?  My first ministry is at home.  I have to be able to take care of my child.  I still don’t know what disability is going to do, my lawyer from the accident doesn’t even call back.  I am living off of the grace of my parents and thank God they are in a position to help us although that means no vacations, no great cuts of meat, no parties, rare fancy dinners, money is always tight.  It isn’t what any of us dreamed or hoped.

There is a ways to go before I pick this business up off of the ground and get it going again.  I pray that in that time I will find an answer and figure out what the best course of action for me, my family, the business, and the ministry.  I can’t do it all like I used to.  I will have to give something up.  That will come when the time is right.

For now, I’M A BOSS!!  Running my show, designing, and planning for a brighter future.  Please, do the same!

Also, check out some crazy stick figures I frea at Chiari Conversations

Monkey Countdown: T minus 29 days

I swear I skipped a day, but this train is rolling and we don’t go backward.  Maybe that pulls me one day closer!  Today was quite a day for me.  It wouldn’t have been different from any other Thursday I suppose except our weather around here has gotten out of hand.  It’s cold then hot then rainy then warm then downpour.  I knew when I woke up that I would have quite a day to conquer even though I am not doing much.

I dropped my daughter off at school.  I tend to slouch to the side in vehicles.  It use to be to the right, recently, it seems more to the left. Then I went to go pick up my sister for a doctor appointment.  At a light, I tried to adjust my hips and slammed my head into the window when I tried to lift up on my right arm but pushed myself over instead.  The people in the car looked at me.  I just looked ahead.  You don’t recover from that.

By the time I made it to my sister’s house, maybe in ten or fifteen minutes, my right hand was stiff from holding the steering wheel.  A dull pain had creeped up to my shoulder socket and I was going to have to use my left hand (which honestly, I just don’t trust as much) to drive for a while.  Thankfully, her doctor is close to her house so I had time to rest after she went in.  I stayed in the truck because I needed to go over my speech therapy words and it allowed me to adjust the seat back and relax a bit.

Then, I dropped her back off, went to pick up my daughter, waited a bit for her (I was FINALLY early for once) and then grabbed lunch and came home.  It was so nice to be home. but my right palm felt warm.  Almost buzzy.  Concerning.  This morning when I got dressed my middle finger went numb on my other hand.  I try not to think about these things because what can I do about them?  I have to wait for this appointment and hope that my body is misbehaving when we go so they can see for themselves what I mean.

Like, what would I do if I lost the efficient use of my hands?  I create.  I put together.  I build.  These thoughts swirl around when my hands hurt.  So, I grabbed my piping hot Beyond burger with Cheddar Cheese on a Croissant and took a bite.  I don’t like to think of it as trying to replace the flavor of a hamburger.  Instead, it has its own flavor, like chocolate and lemon cake.  They don’t compete, they are what they are and that is ok!  I can’t even begin to imagine what these are made with.  All with the croissant that isn’t sweet and fresh spinach.  It’s enough to make anyone forget about their worries.

Then, they serve it with these sea salt kettle chips that are amazing.  They pair well and go excellent with a fine ginger ale or root beer.  I can’t get enough of this meal.  Something about it is very gratifying.

In the end, I don’t know if we can change what is happening to my hands.  It is one of the myriad health issues I deal with that kinda make things miserable.  I have spent more time feeling things.  Holding them, noting their texture, just running my hand across some soft fabric or smooth granite.  I have no idea what the future holds, but I want to make sure that I appreciate what I have right now.  They aren’t perfect, but they write and they draw, and they hold my coffee.  They are miracles in their own right and I will celebrate them forever, no matter what happens because I never realized how special it is to have working, skilled hands.

Monkey Countdown: T minus 30 days

I was putting my facemask on this morning and as I brushed the clay onto my face, I stared at the empty eyes that looked through me.  It’s another day.  They blend together.  I haven’t put a facemask on in a few days and my skin is beginning to break out.  I have been preoccupied with writing and reading and practicing speech therapy.  I am keeping my mind busy because the silence is where my fears take the stage.

I sat down with my coffee, trying to drink it before my face hardened.  I ran through what I imagine the morning will be like.  I will get up around 5am, take a shower, throw on some kind of clothes, but no bra with underwire in case they want to do imaging that day.  I will get into the car with my stepdad, amazed at how wonderful it finally feels in the morning.  We will pick up my sister and head over to the Brain Center.

I will hand them my paperwork that I already filled out and my ID and insurance card, and they will offer me a water while I await my appointment.  Then, the nurse will call me to a room, probably more home-like than most doctor offices since it deals with serious neurology stuff (medical terms, amirite?) and we will all sit down and do a round of introductions.  Then I will be asked about my symptoms and their onset, probably go back to the car accident and explain the evolution of events from there to the brain surgery and the decline since that period.

It is almost a certainty that I will be given another neuropsychological evaluation which is basically them going over my psychological history and my neurological history and seeing how they intersect and when they became such messed up friends.  For me, that is actually enough.  Anything dealing with my past turns into a horrorshow and I really just don’t like getting into it, but we do what we have to.

I imagine that after that she will go over some of what she saw that pushed them toward accepting me as a patient and maybe a glimpse of what she thinks is going on.  I doubt I will get a diagnosis, but I think I may get enough answers to give me something to chew on for a while.

I honestly don’t know if this is what I should expect or not, this is just what when through my head this morning as I drank my coffee with an ever hardening face.  Somehow, working out a scenario feels better than just thinking about what she’ll say.  How will she say it?  What else will be said?  I am so focused on a “missing piece” of information that I want so badly that I forget that there is context and an entire story around this whole event.  I won’t just walk into her office and she looks up and says, “Parkinson’s,”  and goes back to work.  I am so busy trying to figure out this one word or phrase that she is going to say that I am not that interested in treatment options, which are WAY more important.  Of course I want her to give me the answers I have sought for two years, but I have to start looking at the whole picture again and not just the corner or the top.

Monkey Countdown: T minus 32 days

So here I am.  Another day with a headache.  Another day spent trying to organize myself to do something.  Anything.  Around 1100 I realized that I had a therapy appointment.  Somehow, the actual day of the week managed to seep into my head and I figured out that I couldn’t just sit around looking crazy and trying to plan my day.  I actually had to get myself together because I had to leave the house and how quickly everything began to prioritize itself.

I am shaking my head at myself, this is not how things would have been four years ago.  In fact, I would have already had half of my to-do list finished and here I haven’t even finished writing it out yet!  Boy do I miss Michelle from the Before Time.  She runs circles around current Michelle.  The worst spiral to fall into is the past spiral.  I have something to compare everything against, from my hair to my voice to my weight and my ability to thrive.  Nothing I do no is good enough to compete with “The Michelle” that lives on in my head.

Never do I bring the focus to her bad points.  She had a terrible temper and was a perfectionist.  She demanded the best out of herself and everyone around her and if you could not deliver 120% all of the time, it was simply because you didn’t care enough or weren’t good enough.  Every action had a selfish motive, every idea, every planted thought, nothing was ever done for the good of anyone except Michelle and possibly her family.  You feelings were not her problem.  Ever.  Apologies don’t exist.  They do now, but only in limited form.  I focus on Michelle that won scholarships and sang beautifully and had a future in music as a therapist.

That’s the part that often feels the worst is that I wanted to focus on helping people heal through music and now I am more broken than I ever thought I could be.  I don’t know or feel confident that I can finish my degree or that it is worth my time to do so.  Now, I just want to survive, preferably without pain if possible.  If that isn’t possible, then at least in peace.

As I sip on this ice cold ginger ale, I can feel the embodiment of what I desire in the bubbles on my tongue.  A solid backing with a little bit of excitement.  Not too extra, but definitely not flat.

I want to stability of knowing that things aren’t going to get worse, but I know that is not promised right now.

I want the excitement of doing new things but I have a lot of medical restrictions and I am hoping that I can find other exciting things to do.

I don’t want to be out doing things all of the time/

I don’t want to be stuck at home either.

I have pinned many hopes on this first visit, knowing that I probably won’t get a diagnosis and that I may leave with a few more questions than answers.  I know that this is the beginning of a new journey and not the entire trip in one day.  Knowing that I am free to wonder and express my concern is freeing.  I just don’t know and I don’t have and answer and they may not have an answer either for a while  My fears summed up.  May they run wild across the internet and be scared by things far worse than they are!!

Monkey Countdown: T minus 33 days

Today I have mostly dealt with an unending nausea.  Most of the time it is pretty low grade and I keep it at bay with ginger ale and peppermint.  On days like today, it becomes the star symptom.  It’s like spending a day in my first trimester again but without the baby yet with the added benefit of being able to happen at any time.

The headache is there, but it will gracefully stand in the wings allowing a different symptom to come forward and remind me that life can get real in any number of ways.  I decided to stay home for the day except a quick trip to get my CPAP Sd card read.  Then, just be home and think about feeling sick.  Get mad at myself for not appreciating that one time I didn’t feel sick.  Promise my body wonderful gifts if it will just feel better.

Nausea is a terrible feeling for me.  I can feel worse just because something touched my skin.  Or I walked around a corner too fast.  Or I existed.  Whatever, it isn’t picky, just annoying.  So of course I have to ask myself if this is something that they will be able to have some insight into when I go to the Cleveland Clinic.  I have lived with this for over two years and I hate feeling sick everyday.  There is medication, but I don’t think it is really for long term use.  It causes the worst constipation.  Like drinking cement.

I want these doctors to tell me that they have a cure for at least one problem wrong with me!  I also understand that they are human and they may not have the power to grant my desire.  So I turned my desire to something I have a little more control over.

I walked into the kitchen and grabbed my favorite coffee cup, one with drawings of Mickey Mouse with notes about body shape, movement, even ear position.  The signature looks like Don Touvley 7/20/37.  I grab some hazelnut creamer from the fridge and poured a bit in the mug.  Then I went to the coffeepot and poured coffee left over from this morning into my mug until it was the right color.  I put it in the microwave for one minute and hung around while it warmed up and then got it out.

I did that whole thing you see in commercials where you wrap your hands around a warm mug and take a deep inhale from it.  It smelled exactly as I thought it would; like hazelnut coffee.  I took a sip, then a few more because I can’t walk gracefully with a cup of hot liquid anymore.  Had to make it across the the house to the office so I could write this because I am enjoying this coffee right now.  I am actually kind of sad because this is the last of it, but it has been so enjoyable.

The change can be difficult and the unknown often brings fear, but there is always something comforting nearby if we stop and take the time to look for it.  Focusing on something different doesn’t make my problems less valid or important, it puts them into perspective with the rest of my real world.  Things are no longer always so disproportionately huge that I can’t think rationally.  There is the hope that one day I will just have a clearer perspective all of the time.  Until then, I plan to fight the dark side with the sparkly side.

Day By Day Monkey

Having so long without doctor appointments is so weird.  It’s almost like a normal life again, but with a broken body and no job.  I still have my therapist appointments, but that is a nice routine and I actually enjoy having the time each week to talk to her.

The best part is that I get to rest more!  I can take naps and it doesn’t make me late or I can sleep in sometimes.  It’s just wonderful to have no more testing to worry about or blood to get drawn.  It’s kind of weird.  Still, I am enjoying it because this past year has been chock full of doctor after doctor.

The self-care regimen has been fun and I think very beneficial.  First, my face looks great as far as texture and complexion.  Second, my nails are always done.  Third, I love giving myself pedicures.  Fourth, it’s helping me show my daughter that it is totally worth it to take time out just for yourself so that you can smile at yourself in the mirror.  So you know your worth since you have invested into yourself and given yourself value.  This isn’t just a beauty routine thing either.  I take time to read, to learn Italian, to sing silly songs, and make up words.  I have many talents and I explore and sharpen them all in the most fun ways that I can.

I hope to get my daughter into the facemasks with me real soon.  She did one with me, but wasn’t fond of the smell.  I’m not either, but I am very fond of the results and so was she.  Hopefully we can have some mother/daughter beauty time every week so we can pamper ourselves and enjoy time with each other!

Also, I have taken up doing a little extra volunteer work.  Decorating some lunch bags and it is pretty fun.  Got to use stamps, glitter pens, colored pencils, and imagination.  I just tried to make them as fun as possible!!  I just picked up some more, so I look forward to doing this next batch and maybe learning how to draw some new types of flowers.

I am actually very anxious during this time while I wait to go to the Cleveland Clinic, so I am trying to fill my time with activities that focus on positive ways I can focus on myself or positive ways I can focus on other people.  I think that I will be able to get past the anxiety by transferring it into positive thoughts and actions.  Of course, if you have been reading the blog you are aware of  the Monkey Countdown already and we are probably a few weeks in already, so yeah!!

I have been told by so many people to just stop thinking about it so much, but telling me to do something is useless if I don’t have the tools.  I had to have a late night drinking ginger ale, defining my problem and listing my skill-set and THEN I was able to some up with a “how”.  I am not a great writer and out of respect for those who spend time perfecting their craft, I will go as far as to say I am a blogger.  I love writing about the different facets of a subject using a standard format and publishing them at fairly consistent intervals.

So, when I get into my head and into a negative thought pattern about what could happen, I write a short format blog about it, but I use my other wonderful ability to describe things in crushing detail for painfully long periods of time.  I have been finding something beautiful to focus on and then talking about it in detail and at length until the excess energy is used up.  Now, I have spent some time thinking about something that I would have normally ignored or just glanced at and I have not gotten myself worked up over something I have no control over.

I can’t say that this approach would work for everybody.  I am one woman in Las Vegas trying to keep it together while I raise a child and deal with medical issues.  Your life might be a little (or a lot) different from mine.  That is not a problem.  You just have to define your problem and figure out your skill-set.  We all have our own path to walk and we can’t compare because we are not equipped to lead another person’s life.

We are barely equipped to lead our own.  We are constantly picking up lessons along the way that immediately come in handy and would have been useful yesterday.  That is the intrigue of life.  The mystery.  It is extraordinary but in the most ordinary ways.

I still don’t see a future, but I don’t know when to quit.  I encourage you to also keep moving forward, even when nothing makes sense anymore and it feels like all is lost.  Keep pushing ahead.  I can’t even tell you what is there.  I am in Limbo right now, awaiting an appointment that might change my life or begin a chain of appointments, but I have to keep moving ahead so I can get there.  No matter what happens, good or bad, with my family beside me, we will move forward and never stop.  I talk the good talk of wanting to quit. But I was never taught how to quit.  Only how to double down and go on with some type of plan.  if that plan didn’t work, new plan, keep moving.

I encourage you to keep moving forward.  Knowing that it will hurt sometimes, knowing that it will be difficult sometimes, knowing that anything could happen.  Take satisfaction knowing that you chose to make your moves and you accept responsibility for any consequences.  With your health, make the good choices. Listen to your doctors, exercise if you are able.  Whatever it takes, keep moving forward!

Also, check out Chiari Conversations because who doesn’t like a crazy stick figure?

The Monkey Inspired

So there is a blog I recently started to follow:   http://www.thedoorstowisdon.wordoress.com.

I enjoyed his posts because they are real.  They touch a nerve, sometimes one that makes me uncomfortable, but that he has shared and allowed me to experience through his eyes.  I appreciate his openness and his ability to express a darkness that we all feel at one time or another.  Anywho, I got distracted, he’s doing a thing that gets us to expose bits about ourselves that maybe we wouldn’t normally on our blogs; Inspire Me, I dare you!! .  I’m all for it!

Introduce yourself, telling me your name, age and where you are from.

My name is E. Michelle, I am 36 and I currently reside in sunny Las Vegas, Nevada.  However, I was born in Louisiana and raised in New Jersey until I was 13.

Tell me a little about you and your blog.

I am mom to a creative 15yo and I am a few years into a medical journey that started from a simple rear-end accident that knocked part of my brain out of my skull.  Turns out I was born with a condition called Chiari Malformation and that the accident made it symptomatic.  My blog begins when I was diagnosed in 2015 and details my medical, personal, emotional, mental, and physical journey from diagnosis, to surgery, to wondering why things aren’t getting better.  It is very personal and at times has graphic descriptions (not horrible, but medically appropriate) and that is because I wanted people who were looking for info could have whatever I could give them.  mostly, emotional support that they are not alone and that it is ok to have people supporting you and to get therapy because neurosurgery can be devastating.

Tell me 3 random facts about you.

I can tell the time of day just by looking at the sun and shadows, even at different times of the year.

I can match pitch with an instrument simply by feeling the vibration and matching my vocal vibration to it.

I can hear the separate instruments and their various parts even if the entire orchestra is playing.

Tell me three of your worst fears/phobias.

I fear completely losing my ability to form memories.

I fear losing control of my arms and legs.

I fear never being able to sing opera again.

Tell me two of your most favourite places to visit, whether in your country or not.

Walnut Canyon in Arizona. It is beautiful in the winter and has fun trails for hiking.

Pismo Beach, California is gorgeous!  I stayed in a condo on the beach and listening to the waves roaring all night long was magical.  I felt so small next to the vastness of the Pacific coast.

Where do you see yourself in fives years time.

In five years I see myself advocating regionally for Chiari Malformation Awareness.  I am not sure what will happen with my brain over this time, but as long as I am able to speak out for more research and education, I will.

Be happy, optimistic, joyful and smile. Give a reason what’s important to you today.

Today my family is important.  They give me the love and support that I need to make it through the worst days.  I look forward to a time when I can give back to them as much as and more than they have given to me to make sure me and my daughter are taken care of during this crazy period if my life.  Until then, I look forward to each day we get to laugh and roast each other and enjoy our time together.  They are my favorite people ever.

The Wee Monkey

So, I recently had my first visit with my urologist. I never thought I would have to see one, but one of the worst symptoms surrounding my headaches is the urgency to urinate (or pee, as I will likely call it). It is the need to go RIGHT NOW and then when I do, it is a disappointing 2 second trickle that will repeat in less than an hour. This can go on for days or weeks. It especially becomes bothersome at nighttime when I have to constantly disconnect my CPAP equipment to go to the restroom, so I made the appointment and decided to go…so I could control when I had to go.

First, my mom picked up the paperwork so I could fill it out prior to going to my appointment. My sister sat with me for-EVER filling out form after form after form. One was called the I-PSS test. We laughed relentlessly. Then cried because there was still like, eight more pages!

On the morning of my appointment, my mom drove me and I gave the receptionist my patient booklet and ID cards. I looked around and noticed I was looked like the youngest person in the office, maybe by 2 decades. So, I just pretended to be there for my mom. HAHAHAHA!! Till they called my name and I answered like I have been conditioned to.

Just as I suspected, they gave me a little cup on the way in. I had prepared and had water the night before and in the morning so I would be full of fluid. This is where the whole scope of my morning changed. I was not prepared for the situation I was walking into.

I go into the restroom, cup in hand and as I swing the door open, I am hit by a wall of frigid air. The light automatically turns on and I grab the handle to shut and lock the door. Luckily, my hand was not wet or it would have frozen to the cold, metal handle. I pull off my fleece shawl; no need for innocent victims in the war I am about to fight. They needed a clean catch urine specimen, so I go about washing my hands well. A very modern office, the faucet was motion controlled. Still, the water was barbarically cold and immediately my hands began shaking.

I cleansed them well, turned to the motion controlled paper towel dispenser and somehow managed to get cold paper towels. I patted my hands dry and grabbed the little packet of cleaner for your hidden parts. It was like they had just gotten them from the fridge before I got there, and when I opened it, I pulled out a freezing sheet of broken dreams.

TURN BACK IF YOU CAN’T HANDLE SENSITIVE MATERIAL…you’ve been warned!!

If you are a lady and have had to do a clean catch, you know it already isn’t the most simple thing. I am TERRIBLE at catching my own urine under normal circumstances. I have a large chest that blocks my sight and somehow, my pee can change directions!? This day proved to be the worst. My hands were shaking from the cold and as the wipe touched my lady-bits my legs started shivering.

I was hovering, but since everything was so cold, I couldn’t start peeing, so I made the terrible decision to sit down on the frosty toilet seat. It was like my body sucked up everything and closed up shop. So, I had to relax as my own deathly cold fingers held a still empty cup against my unwilling body.

Finally, I was relaxed enough to start peeing and when my fingers felt the warm cup filling I got so happy that I stopped peeing, so I had to relax again. Then I couldn’t stop peeing. The cup overflows, now my hand is covered in it and it is getting cold, fast. I grab some toilet paper with my free hand and grab the precariously full cup while still peeing. I set it down, grabbed more tp to wipe my hand, and finally more to wipe myself. Then, I grabbed the lid, screwed the top on and wiped it down.

I waddled over to the lab door and placed my cup in there and then waddled to the sink and washed in the cold, cold water with SO MUCH SOAP. Got more paper towels and dried off my hands and finally pulled up my pants because my whole bottom side has just been out in this chilly bathroom air.

Finally, I go about damage control, flush the toilet, make sure there is no pee on the floor, wipe the handle of the lab door, get the water off of the vanity and finally, grab my shawl and go get my BP. It was at least fifteen degrees warmer in the hallway.

I was led to the room where my mother was patiently waiting for me, unaware of the Frigid Urine Incident Of 2018. After a few minutes our PA came in and we discussed what was going on and she believes that my problems are neurogenic but added that the urgency can be handled with medication, especially at nighttime and only has to be taken when needed.

She also recommended that I get a referral to the Cleveland Clinic Lou Ruvo Center here in Las Vegas. That makes at least eight medical providers of mine in various specialties who feel that this is where I need to go to find answers. So, just waiting for the prescription to be filled.

Pretty anticlimactic, eh? Well, everything can’t end in an explosion. Especially when it has to do with my bladder! Luckily, it’s nothing super crazy. Just another provider giving evidence that something is happening in my brain and it is affecting my quality of life. Really, this post had much more to do with sharing the raw portion of this visit. Because of what is happening in my brain, my body has a difficult time warming and cooling itself and even relatively normal temperatures can cause me to lose some control over my fine and gross motor abilities. It can prevent my body from carrying out normal functions such as urinating without having to use extra effort to relax. I can’t drive a car when I am cold. I can’t cut food when I am cold. I can barely think in the heat.

Having a hidden illness usually means people thinking nothing is ever wrong except a headache and some nausea when really it encompasses my entire body. My eyes, my ears, gastrointestinal, urinary, respiratory, endocrine, cognition, emotional response, memory formation and recall, and anything connected to my central nervous system are affected. Having a chronic illness means that I constantly have to keep track (with the help of apps and family) of symptoms, changes, and new occurrences so that I can keep my medical team aware of what is happening as they search for answers.

I know so many people are in my position and they deal with the ugliest parts of illness alone or with family behind closed doors and it can be very alienating. People think you just cancel on them or don’t want to hang out but really you can’t control a part of your body and you are miserable. For their sake you make the problem sound like it is just a bad headache or back spasm, but you are dealing with something that is unspoken in polite company. I expose my own situations because I lost my shame years ago and even if you can’t talk to someone, you can read this and know that I have been through it. Start back at the beginning of the blogs, you will find much exposure. My life is open so yours doesn’t feel closed. You aren’t alone. You can do this. Get that support system. And pack latex gloves for the urologist!

Check out my comic, Chiari Conversations…because it’s cool.

The Present Is A Gift

The Bitter, Petty, Mean Monkey

I am not happy. It is not a word that people would use to describe me. It certainly is not one I would use to describe myself. I used to think I was happy, but my family pointed out to me that I was (and still am) bitter, petty, mean, pessimistic, and choosing to not be happy. Apparently I was just blissfully ignorant of who I was. Looking back, they are right. I have not experienced real, lasting happiness in years. I do not look for happiness. It does not feed you, or warm you, or shelter you. I look for survival.

See, it goes back to the days when I was still being molded as a member of society when I was told that nothing I did was good enough, no man would ever love me because I am not good enough, that I am just not enough. Sure, in my other ear I had my mother who made sure to say I looked fine, that I did fine, that it was adequate. I couldn’t impress anyone. He did it because he liked mind games. She did it because she didn’t want us to get used to heaps of praise. What I got out of it was that I will never excel and if I do, no one will be proud of it anyway. Eventually, I couldn’t even impress myself. Here I am all these years later with 99 medical problems, no house, car, job, social life, or money and guess who is the least impressed with it?

I no longer try to impress people. What does it matter if I do? Their astonishment at me or the things I can do doesn’t do anything for me. At night I still go to a home that is not mine, I look at the same broken body in the mirror, I take the same medications, and I go to sleep and hope that I can at least have a decent dream so I can live normally for at least a few of the 24 hours in a day. I have come to crave sleep as an escape. In my dreams I don’t hurt, I have a job, I am a functioning member of society. I can go horseback riding, I can dive, I can go on roller-coasters. I smile so much in my dreams. Then, the morning comes and the sun rises and opens my eyes to my reality. I hear the air from my CPAP, I feel the aches in my body, I try to remember what day it is without looking at the phone. I come back to a reality that has worn me down so far that I just don’t want to go any further. If I had the physical ability, I would just run away to the mountains and be alone.

This is not the case for my family, though. They want me to be happy. Happy. HAPPY! So much so that they don’t even care if that is what I want. I don’t want to be here. I don’t want to be a grown woman living with my parents asking someone to please buy me toothpaste. That is degrading (in my opinion). That doesn’t inspire happiness in me. Am I thankful that they do it? Of course, I am sure they are too since they don’t have to smell morning breath all day. Still, being put back into the position of a child has inspired a self-loathing that even I didn’t think was possible.

To add that extra layer of discomfort, I have my religious beliefs and I have to ask myself constantly, “how far outside of the Bible are you with these feelings because you are doing a great job suffering, but it seems to be breaking you.”  I don’t even pray for myself much anymore. I don’t even care, I just ask to be kept busy and that my time here isn’t long. So, I keep myself busy with ministry, I help other people. Then I often watch as they flourish and I develop another health problem. I try not to question God, that usually just leads to more problems, so like an ox, I just do what I have to do, eat, and go to sleep. Then, wake up to the same reality again, and again, and again.

I don’t know why I feel I cannot choose happiness. I feel like it isn’t a choice. Sometimes you are happy, sometimes you are not. I should be more grateful, so I guess thank my parents even more than I do now. They do so much for me. At what point does it become groveling? Does that even matter? If I had the ability, I would just leave. I would disappear. I love my family, but there is no feeling like knowing you are radiating unhappiness and they are suffering for it. I am the broken glass that they cut their feet on everyday. My mother more than anyone makes sure that I understand how unhappy and venomous I am. I am a plague upon her house, but one that she can’t bear to part with. She doesn’t want me as I am, but can’t accept that I may not change. Unlike her, I can walk away from it all. I am so used to being hurt and empty, that it would just be another little blip on my radar. I simply don’t have the means. That is very anxiety producing. I need to at least pretend to be happy for her sake, but I will simply resent her for it. I can probably pull it off for a while, but I don’t have the tolerance for stuffing my emotions like I used to. I don’t want to explode on her or anyone else. I just want to get away. Just, gone. I don’t even have anywhere to go. If I did, I wouldn’t have the means to survive. I am trapped in a life I hate, in a body I hate. This does not inspire happiness.

Honestly, I don’t know what the core problem is with me. It could just be that I am a terrible person. It could be that there was an emotional component that did not develop all of the way. It could be that I am super immature and whiny and I should be thankful because other people are going through worse things than I am. I go to therapy to work through this, but it is not fast enough for my family. I am used to being a disappointment. A well loved disappointment. Please, don’t take any of this the wrong way. My family is very frank, we do not beat around the bush, and I have no argument with any of their assessments of me except one. I am bitter, mean, pessimistic, and unhappy, but I don’t feel like I choose to be unhappy. I feel like that is just how I am. I have become fine with it, I don’t understand why they can’t be.

This is a very rough journey for my family and I chose to expose this because so often people are ashamed of what they are going through. I have had a traumatic brain injury. I have a patch on my dura. I have chronic pain and nausea. I fall. I miss my old life. I imagine many people who have gone from able-bodied to chronically ill experience a range of overwhelming and often negative emotions. If you see yourself in this situation, experiencing similar feelings, PLEASE know that it is NORMAL but that therapy can really help sort out and deescalate these emotions so that you are able to eventually achieve your new normal. Understand that the process does take time, and it can be emotionally painful, but it makes such a huge difference when you are trying to get through a situation that is less than ideal.

Find your main support group and also speak to your PCP about counselling so that you can have a safe place to vent and relieve your frustrations and look for answers to your issues.  There is no shame in seeking professional help. As a Christian, I can tell you that I go to a PhD level psychologist because I have not just issues, I have subscriptions. I have a lot I need to work through. So, please don’t give up. Take a break if you have to, but then get back on the track and keep running. Even if you don’t find “happiness” you will likely find purpose, and that will carry you further and help more people.

The Chiari Sea

 

Inky Monkey

I love the arts.  I am particularly fond of music (Baroque being my favorite period) but I enjoy the grace and beauty of ballet, literature from all over the world, and of course I admire the curves of a statue or the brush strokes of a master painter.  However, I am aware of a few things:

  • There are other forms of artistic expression and art evolves
  • I only have a small bit of artistic ability outside of music and sculpting
  • It is OK to be bad at art and still enjoy trying

So, I decided to participate in Inktober, which is where you draw something everyday for the whole month of October.  If you click on the link above you can visit that site and check out the rules and past prompts.

Anywho, my hands seem to be weak and so the prospect of drawing something everyday is very daunting.  However, I am waiting to hear test results that could alter my life course so I am challenging myself not only in dance (my feet are also weak) but I want to push my hands to their limits.  I have tried to keep each design easy, things I think I can draw fairly easily, and in most cases I do not color in the picture.  I usually will use dots as color markers because it hurts to hold and press continually to color.  The dots use my wrist, so my fingers aren’t taking as much stress but they are still used to do the initial sketch and the ink lining.

Having a chronic illness or chronic pain or any disability can be discouraging when life changes drastically.  For me, it has been shifting and changing for three years, so even though my family and home are stable, my body and health are not.  It gets very easy to quit or give up on things because I physically just can’t do it like I used to or my neuro team says, “NO!!!”.   I decided to not let any of this stop me from finding ways to express myself and get my energy out in a peaceful way.

I joined dance because my body feels foreign and we need to be back in sync. I decided to do Inktober because I wanted to release creative energy.  What really lured me in was the challenge to do something that I enjoy but am not really good at.  I can make a drawing and people can know what it is, but it usually would not be considered “art” by anyone with reasonable taste.

We are four days in and I have given every day 100% effort to make something that I didn’t think I could make.  Today, I think my most difficult challenge was perspective.  I really didn’t put that much thought into distance and size so I feel like everything looks ‘off’ but I am still happy with my work.  I am happy with myself for trying and being able to figure out what I think could have been better.  I hopefully will adjust for the future.

My fellow humans, perspective is often what we have to work on so that we understand what is going on and how to best deal with it.  It is easy for me to lay around everyday with this stupid headache and watch cartoons.  Changing perspective has allowed me to see that I have the opportunity to recreate myself as soon as all of my medical issues are under control.  I just have to keep trying new things.  For now they help me not think about test results, in the future they might be what I need to make an impact on the world.

I encourage you to try new things or do things you aren’t good at for a little while.  It is amazing what your brain can do when you give it freedom to express itself in new ways.  My hope is that everyone can find activities that suit their needs, physical, emotional, and mental.

If you are a part of someone’s support group make sure you are a cheerleader.  Be supportive even when you are fairly sure the person has lost it.  Do the same activity, or at least give feedback on the person’s progression.  My daughter is an artist, and she critiques my drawings with the knowledge that this isn’t my strong suit.  Shoot, I am not a writer, my sister is an author, and I write this blog like I know what’s up!  I realize I probably change persons and tenses and that I easily switch from proper grammar to words I make up a little too often, but she gives me the benefit of knowing that I sing.  I write as a fun thing, but nothing serious.

Your support means so much to the person you love because they have probably seen the misery of someone who does not have a support system.  It is heartbreaking to think of what life would be like in the worst of times without you being there.  We love ya’ll.

That’s it.  I have to go get some rest because tomorrow I have to draw something else and I have to get that beauty rest to make beautiful things!

Monkey: Purpose

Life.  It is just a short journey we each take through linear time.  We have only so much time to grow, learn, find purpose, and create a legacy before the vapours of our earthly existence vanishes.  Some seem to know their purpose as children, others seem to die of old age, never discovering why they had the opportunity of existence.

I have my beliefs about why I am here, but I am not here to get into the personal beliefs of myself or anyone else.  I am here because I believe that on the most base level of existence, everything serves a purpose that usually cascades and has effects that ripple out and affect other things.  Take a tree that has great flowers, it attracts bees who like the nectar but get covered in pollen, so they pollinate plants.  That allows the bees to take care of the whole hive AND make the honey we snatch.  It allows those flowers to be fertilized and create fruits for us and animals to eat.  Then it allows for the seed that was discarded from the fruit to grow into another tree if it finds good soil and keep the process moving.  So, from this one flower can come a tree.  From the bees comes honey, and we plant the seeds to grow more trees.  Lots of benefit happening here.

Everything knows its job.  The bee does not try to carry the seeds.  The people don’t dance to show the bees where the flowers are.  The tree doesn’t make the honey.  They all just follow their purpose.  This becomes more difficult when it is people*.  Why?  People have created a society that dictates a lot of what is right, wrong, good, or bad.  Many people aren’t brought up with the true mentality that they have options for their life.  A lot of people are damaged or broken from something that happened years ago that stained their soul.

Many grow up following the expectations of society or parents or school officials who are often looking at what will be “stable” for a career.  Many people go into a field they find unpalatable because it provides job security and stability.  Eventually, something is missing.  What could it be?  The house is paid, the kids are in school, retirement is close, but still a void persists.

I am beginning to believe that it is because through all of the struggling to stay afloat and get ahead in this world, we find fleeting moments of happiness with no undercurrent of joy.  It is great to buy the house.  What if you rented out a spare room to a college student at a low price and helped them feel like they are at home in your city while they study there?  It is awesome to purchase the car, but what if you offered to give your less fortunate coworker a ride home WITHOUT receiving gas money. Just do it because they are struggling enough and you have the ability to help.

I am not saying we should all let strangers in our houses and give rides to the world, but many times people overlook the smaller gestures in life that are absolute gamechangers for someone who does without.

Never would I recommend this type of thing without trying it first.  At this point in my life I don’t have much to give financially, but I do have extra time on my hands.  When I hear that someone is sick, I start roasting a chicken and make soup.  It isn’t fancy or expensive, but it is just a way to show someone some kindness when they aren’t feeling well.  I don’t get anything out of it.  In face, I lose so many storage containers that I have to buy new sets every few weeks.  It is a small price to pay to see the smile of someone who may have felt forgotten or just alone.

In the past year or so I have also taken to randomly complimenting people.  Sometimes someone looks like they have a lot on their shoulders and I can’t fix every problem.  I will compliment someone and they usually feel safe enough to begin opening up and sharing what is bothering them.  This gives me the opportunity to listen and get them the person or services they need to take care of the issue (in most cases).

My goal is to make sure people feel better about themselves than they did when we said ‘hello’.  My purpose is to help those who are in crisis or after a traumatic event.  I discovered my purpose after my brother was murdered and I never wanted to see a family unable to properly grieve for any reason that I have influence over.  I plan and oversee funerals with the help of a large team of people.  We take the responsibility so that the family can talk and cry and mourn and not have to worry about guestbooks, repasts, and table linen.

It seems logical that most people would find their purpose after a traumatic event, however parlaying your pain into purpose means embracing your pain.  Accepting it for what it is.  Allowing it to wash over you, and this is what I go through at every service I am in charge of.  I put someone else in charge for 15 minutes and I go up to my office and fix a cup of tea and read the Bible and and talk about my feelings to God.  Then I compose myself and make sure that the family is comforted, cared for, and looked after.  My job doesn’t stop after the repast.  I call the families and visit them and make sure they know that I am always available to them.

After this whole Chiari Malformation and brain surgery, I added ‘advocacy’ to my list of purposes.  I am also a mom, a sister, a daughter, and I have a purpose in the life of each of my family members, and they in mine.  (May be good English. May be bad.)

I want to encourage you if you are in a place in life wondering why you even exist; you are the key to helping someone overcome the obstacles you have conquered.  If my blog helps 1 person to understand that decompression is no cure but that doesn’t mean you can’t lead a full life, then all my words have found their meaning.  We are not required to give back to a world that is so unkind, but we are also not required to behave as they do.

Our pain and struggles tell stories that those who feel voiceless and alone need to hear.  It could be Chiari, a family member dying, mental illness, harassment, or even a life changing injury.  Whatever your story is, there is someone out there who could benefit from hearing it.  In the future, the see you planted will grow into a tree and bear flowers that attract someone else who needs what they have.

Our purpose, in my eyes, is to love one another, even when it hurts.  Especially when it hurts.  Feel the hurt, acknowledge it, and remember, if you are alive to real my words then so far you have made through 100% of the problems and that is a great record!

I hope this made sense, at this point, there has been a lot of coffee and I am thinking very fast!  Love ya’ll!

 

*NOTE:  I am NOT a doctor, scientist, writer, physicist, or biographer, so use common sense while reading.

 

The Fat, Ugly Monkey

*Warning, I am speaking my own truth as I see it.  If you are sensitive, that is not my concern.  This is about me, not you.  Thank you.

There are days when all of the ugly must come out.  Today, I feel ugly.  Inside and out.  I try not to think about it most of the time, but some days it just hits me and I have to feel it.  There is this body-positivity thing happening that I can’t say I am fond of.  No, Jenny, I can’t just love myself when I am 80 lbs overweight.  I can’t find the beauty in this lumpy, bumpy, squishy body I call home.

Am I thankful for what it can still do? YES!!  Although I have issues sometimes, I can still walk.  I can talk and think most of the time.  Very few things hold me back and I am usually unsure of how to stop moving forward.

This extra weight though.  I can feel it on my ankles, which used to be so thin and shapely, and now swell under the pressure from these giant trunks I call ‘legs’.  They used to be so shapely and muscular, now they have varicose veins and scars, and the bumps and lumps of cellulite that wiggle and jiggle with every movement.  They used to be able to squat over 200lbs, now they can barely squat at all.  They connect to the rest of my body at this thing called ‘buttocks’ but could be mistaken for a misshapen sofa cushion.

Luckily, I am balanced in the front by my pregnancy pooch that never went away, I just left it, I guess.  My whole midsection has become a mess of rolls and folds in front and back, topped off by a chest I can’t even stand to look at.  With the extra weight, my shoulders just look droopy and it merges into my bat-wings very nicely.  My lower arms and wrists have no real tone and have lost their natural shape.  Even my long fingers are looking like under-stuffed sausages.

My neck used to be so thin and graceful, it is now what I long referred to as a “ham hock”.  My chin used to sit alone, but now it has more chin companions.  Luckily, I know how to take a good picture so you don’t see all of them.  Even the shape of my face has just puffed out and has no real definition anymore.

For some women, they would take pride in every negative trait I listed AND THAT IS OK!!  I am unhappy with myself, but I make the changes I need to.  Except, I can’t work out everyday.  Right now, I can’t work out at all.  My doctors have no idea what will or won’t cause a seizure right now and I have to be very careful that I don’t work up my brain and body.  So, I have cut my calorie intake.  Increased water.  More vitamins.  All of this, to not GAIN extra weight while I wait for test results and possibly more testing.

Inside, I feel like a whole other person.  I used to be someone in my own mind.  Not someone special, but I had qualifications that I met.  I was a student, I worked, I was a mom, I volunteered in multiple places, I hiked, I took road trips.  I had the things that made me someone who I was proud to be.  I hadn’t bought a house, but I was working and living my life.

Now I am unemployed, forgetful, lethargic, boorish, and I just can’t stand people half of the time.  I can barely do my laundry.  I can’t drive anymore.  I have a litany of medical restrictions.  Some days, I don’t get up except to go to the bathroom.  This is not the person I want to be.  I am now seeing myself as an unhappy person in a fat person’s body and I don’t have all of the tools I need right now to fix any or much of that.

I go to therapy.  I do yoga when I can.  I attend dance class (mostly for the stretching, but I hope to learn some dance) when I am able.  I watch my diet for the most part.  I get out the house, visit friends, read, listen to music, draw, create, do puzzles, and all sorts of things.  None of these things brings me the the health that I want.  I don’t even seek happiness.  I just want to be healthy again.  If I am healthy then I have everything I need.

Getting there is the hard part.

I am not saying my life has no value, I simply am not happy with myself and right now some medical conditions (that were caused by a car accident) are getting in my way of feeling healthy again.  I feel so defeated some days.  I wish I could afford surgery to just make me skinny, but I think that wouldn’t help my mind feel better.

Working through chronic illness is a process, including weight loss and finding new things that make you feel productive.  I suppose there is the chance that I will never feel normal again.  I hope one day I will, but if I don’t, I hope I learn to live with feeling this way and not feeling guilty.