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.

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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

 

The Monkey’s Plan: CANCELLED!!

I sometimes wonder what I would be doing right now with my life had I not been in the car accident.  My plan was to move to Louisville, Ky, and finish school.  Then come back to Vegas and open up an art therapy clinic with music, visual, and movement arts.  I was prepared to make every sacrifice, to go broke and bring other people’s bank accounts with me if that’s what it took to make that happen.

Now I don’t spend as much of my time wondering about what-ifs because who is to say something else wouldn’t have happened?  I sometimes try to imagine a future but it doesn’t work like it used to.  In the Before Time I always had a vision of my desired future to strive toward.  I am not sure when that vision faded and was replaced with nothingness.

My life is moving forward, but I am stuck in a sort of limbo that I am having a lot of trouble getting out of.  I really want to have my life back but I realize that is not going to happen.  I just can’t seem to make myself want another life.  I don’t see a life for me as valuable as what I had planned.

I feel like I wasted so much time in school, performing, rehearsing, recitals, practicing, and preparing for a life that I won’t have.  I feel like I wasted so many valuable resources trying to achieve a dream that has now died and haunts me.  I could have saved money and gas and spent more time with my daughter and family.  Now I am left with nothing but knowledge that borders on useless and an intense desire to speed up time.

The worst part is that whatever place I find myself in, I will likely stick to it because I am not too keen on chasing my ambitions anymore.  I just want something that is mine plus peace and quiet.

If the Cleveland Clinic is able to get me back into the job market, I will just travel with the herd and do what I have to do to survive.  If I can do that until retirement, then I will be ok.  That was always the end goal was to work and make it to retirement.  As long as I am a productive member of society, I am ok.

In the same breath, taking a job means stopping my extra activities.  I am no longer in the position to say ‘yes’ to everything and so I would stop all of my volunteer work so that I can be as effective as possible on my job.  I then have to ask myself is the monetary compensation worth more than whatever it is I get out of volunteering?

I hate to even think of the question because I would look and say that volunteering has brought me not much but I enjoy it.  Volunteering isn’t really about what I get out of it, which incidentally is often a headache and back spasms.  Yet it makes me feel like I have done something important.  The downside is that no one will accept my ‘feelings’ in lieu of rent or bill payments.

If I could live off of volunteering I would.  It makes me feel so good.  Then at the end of the day, I have to go back to my life.  I miss having some control over my life.  I miss having money to do stuff.  I miss that feeling of satisfaction after I got the text that my check was deposited.

Having a rare condition is more than just the physical changes that overtake my body.  It is how those changes affect my ability to live and function everyday.   One of the things that has never bounced back is my energy level.  Do I think it will?  With some concentrated effort (Physical therapy is in the works) hopefully I will have the stamina to hold down 40hrs a week doing something that will pay me enough to live and take care of my daughter.  In exchange for being able to survive I will have to give up something else that saps energy away.  I have to have time to rest and recover, especially in the beginning.

When I was told that there was a program that was solely to help reintegrate brain injury patients into the working world, that changed my view of what was now possible.  While I have a business license and would love to be creative and sell fashion, I prefer a steady job where I can just do what I am told to do and go home.  I don’t have to be in charge, I don’t have to make the schedule, I just have to perform some task for 8 hours then I am free to go home.  Just the thought of regaining that portion of my life is so enticing that I can’t help wanting to start this program yesterday!

Will that mean the end of funeral planning?  Probably.  Cooking?  Yup!  Teaching? Yessir!  Five Bible studies? Mmmhmm.  Yet it can be the beginning of a more familiar and comforting ‘new normal’ and that is what I have been looking for.  I am tired of my life wasting away while I come along for the ride.  I have learned so much in the past three years about suffering, I think I could survive even the worst job.

I guess I just miss my life and if given the opportunity right now, I would walk away from everything I do to work for the next 30 years and live in obscurity.  That has always been the end goal of my life dreams and that is what I am looking for.  I feel awful that I would walk away from my position and duties at church and the other places I volunteer, just because I prefer having a paycheck.  I just want to be normal again.  If I have the chance, I’m taking down the blogs too.  I won’t need to share my life because it will be normal again.

I would give anything for my life or some semblance of it back.  I don’t know how it would affect my Christianity or how it would affect my relationships with people, but I want that normalcy back.  Whatever that is.

If you have made it this far, congratulations!  I can barely survive the ramblings of my own brain and yet here we are.  This is the very reason I try not to think about any of this stuff.  I have a thousand feelings that I can’t seem to resolve.  I know my life will never be the same, but I can’t imagine anything else and that scares me.  Feeling like I will always be forced to settle for a life that can never measure up to my dreams takes the wind out of my sails.  I will settle for whatever life gives me because in the end I am thankful for every ability that can still be redeemed.

This is one of those things that I work through in therapy.  This is why I recommend therapy so often.  Having a chronic condition in your body affects your mind.  It’s good to talk these feelings out with someone because they are valid and should be recognized and acknowledged.  Life is hard but with a good support system we can get through.  It will involve some tears and some effort, but we each have the ability to rise above and make the best of whatever situation we are in.  I hope you have people around you who listen to you and if not, find some.  You are worth having your story heard and getting support to get through life’s tough times. It’s a hard road, but we can do it!!

The Monkey Power

There is so much that goes on in the life of someone with a chronic illness or a disability.  There is the normal life stuff plus the added bonus of whatever malady is mingling with my body.  If your situation is like mine then there is a period of time that involves a lot of adjustment and can be extremely difficult.  The fact that I stopped working really weighed heavy on me after my initial recovery from surgery because something was still going on and I had too much free time to think about how horrible my life felt and how I would never be able to be what I wanted to be.

This period of time was difficult for many reasons, but mostly because I was not used to feeling victimized by my own body and answers were impossible to come by.  That is when I truly learned that I have to advocate for myself all of the time.  I have always stood up for myself, but rarely would I argue with a doctor; someone I consider to be a learned professional.  With my family by my side, I began questioning doctors, I changed my PCP, and I started taking the lead at my doctor visits.  I come in with an agenda, questions, and medical studies if I really have a point to make.

My change of attitude led to the doctors listening to me and to things getting done.  I got the sleep study and all of the exams and tests.  Now I am at the brain center here and I am receiving some top medical love.  I advocated my way to the doctors I need to see.  However, it took over a year, so please be patient.

In the meantime, I was introduced to the unite@night walk that Chiari and Syringomyelia Foundation (CSF) have each year and I volunteered to be the chair for the walk for 2016.  IT WAS SO STRESSFUL!  I loved it!  While it wasn’t huge, I was able to get some folks there.  I am again the chair and one week out (at the time of writing) from my second walk for CSF with way more confidence than I had last year.  All of my goals are a little larger and we are getting there!!

The more important thing is that this is giving me a platform to stand on and spread awareness about something that is so important to me.  It feels like I talk about Chiari every time I leave my house and that feels great because people need to be aware that it exists.  This also gives each of my doctors a glimpse of the life of a Chiari patient and so I am spreading awareness through the medical community.

It breaks my heart to know that there are people out there with the condition that I have and they are suffering because their doctor won’t order a simple MRI or add up all of their symptoms so they just live in misery.  I believe Chiari takes an average of 5-8 years to properly diagnose because it is frequently misdiagnosed (prolly need to look up that stat and see if it has changed).  This is why advocacy and awareness in the medical community is crucial.

Even if your struggle is not the same as mine, think about becoming more outspoken about it because people need to know the we are humans who are differently-abled in whatever way but that doesn’t mean we should be treated differently or poorly.  Use your intimate knowledge of being deaf or in a wheelchair or in constant pain to educate someone who may not understand your condition.  Of course not everyone is going to listen or care, but most people are surprisingly attentive when I explain Chiari and I usually only have to list a few facts for them to get started asking questions.  Please, if someone asks a question that seems obviously dumb, answer it anyway as best you can.

Those of us who are comfortable speaking up are ambassadors to the world for our conditions and it is up to us to get the word out to make it easier for those coming behind us.  We want to get people interested in funding research or going into the medical field to become researchers to help us find a cure, a treatment, a medication, a device, or whatever can help with restoring normalcy and autonomy to people’s lives.

Advocate for your children when they are in school so they can get the best education.  Advocate for homeless vets, abused pets, environmental issues, or whatever is close to your heart.  Not only will you be able to fill some free time that might be spent “plotting”, but you will be starting the change that you wish to see and should you keep at it, you will see results.

Most importantly, you find a sense of purpose in a place where you previously felt helpless and that is an amazing feeling.  Empowerment is a tool we all need to learn to pick up and use to our advantage because it will help us see the changes we desire.

The Monkey Tooth

I never want to give the impression that all that is ever going on is brain related stuff.  I deal with all the same stuff everyone else does like allergies, dry skin, and the existential fear that I am living in a dream.  Today I am dealing with another human thing.

Toothache.

Went to bed feeling ok.  Woke up with a swollen face that hurt.  Went to the dentist and discovered I have an infection at the root of a tooth that broke a little.  So, I look like I may have lost a fight and my insurance isn’t going to cover this root canal. This $1370 experience is just making me want to steal a body and transfer my mind into someone a little less broken and broke.

The worst is that I have been enjoying some low pain days and I was beginning to enjoy them.  I am trying not to let this be such a thing, but it hurts so bad and I just want it to feel better so I can enjoy these nice days.  I know the antibiotic will help with the pain on the infection goes down, so I am hopeful that they work quickly.

In the mean time, I still have appointments to go to and referrals in the works so that I can deal with some of these other issues that I am usually focused on.  I think that there are times when people don’t understand that everything that happens due to chronic illness or chronic pain is on top of all the normal life stuff.  You get medical bills on top of the ones you have.  You get yearly screenings for brain changes/cancer changes/illness progression on top of physicals/dental checkups/and eye exams.  You get the discomfort of your illness symptoms on top of regular colds and allergies and injuries.

Socially, for me anyway, the worst part is that I already an uninvolved in so much because I never know how I am going to feel.  Something as unexpected as a toothache totally cancels anything that I have planned and that is upsetting.  It is hard to enjoy myself when my face is in this much pain.

I want to write more, but my mouth is killing me and I just want to take a walk and lay down with an ice pack until it is time for more medicine.  So, bye!

The Monkey’s Wrench

There is a time when things seem to be going smoothly and there is a time when the plan is changed and consequences cascade around you like Niagara Falls in your head.  I only know because I had finally become accustomed to the medicine regimen I was on and then I was taken off of one.

Understand that every medication has intended and unintended (but possible) effects.  So, the medicine I was on that stopped my secondary headaches from sneezing, coughing, bending over and such was removed from my prescriptions, so now I have less tremors!  I also have worse headaches than I have been having and they come on rapidly just from everyday activity!  Yeah, that’s not so great.  Also, it was an appetite suppressant so I am starving and it made me sleepy so I am not sleeping through the night right now.  I am eating through the night.  It is a mess.  Now I have gained ten pounds.  I can feel them all!  I am trying to combat this problem using oatmeal at night with extra flax.  Maybe a really full, slow digesting tummy will help.  I really don’t want to add another medication to my list.

This often overlooked annoyance is so frustrating when you are in the middle of dealing with undesirable symptoms from starting or stopping a medication.  Digestive patterns can change, feeling in limbs can change, sleeping and eating patterns can change and it’s hard to overcome chemical signals by your body.  I imagine more so if you do not have a strong support system behind you.

So, if a doctor stops your medication and you are suffering, TELL THEM!  They may be able to prescribe something without the undesired side effects or provide a different path for treatment and management.  Just because we have a chronic illness doesn’t mean we have to be constantly miserable.  We just have to be willing to work with our doctors and do our own research so we have valuable input for our treatment.

This is the first time I recall having this type of issue coming off of a medication so I am in contact with my doctors while we wait for the referral to the headache specialist.  I don’t expect to have any serious problem, but I am aware that I could be open for a nasty headache that requires a hospital visit.  As of right now though, that doesn’t seem like a possibility.  So, I will just deal with what is going on and hope I get help soon.

This is what people go through.  This may be my story, but so many others share this.  It’s not always something that is “appropriate” to tell people, but feeling isolated only makes things worse.  If you are having trouble with your meds, call your doctor and ask for help.  They will be able to help you or refer you to a specialist who can help.  It doesn’t make you a burden or a hypochondriac, it makes you a human who is worthy to seek relief.

One day I hope this isn’t even a thing.  Until then, I hope each of us gets the help we need to feel loved, productive, and normal (to a point).

The Monkey Memories

Today was a Sunday like any other.  Got up, had some coffee, went to church.  Wore a comfy dress and cute sandals to show off my pedicure.  I have even been feeling pretty good today so I took advantage of it and enjoyed my day fully.

So, after church, a bit of shopping, and a trip to the bank I came home and was enjoying a cup of coffee with my parents.  For the life of me I couldn’t figure out why my foot hurt.  Then I  scratched my leg and there was a lump and a developing bruise.  It took a few minutes of thinking to sort out where the injuries came from.

I was going upstairs at church, I went to step up on my left foot, but it did not lift off of the stair like I thought it did, so I slammed it into the face of the step.  I was already in motion to step up with my right foot but I overcompensated and slammed that toe into the step above it.  This caused me to pitch forward and hit my right knee on the edge of a stair and when I tried to recover I slammed the top of my left foot onto a stair.  I didn’t tell anyone when it happened because I don’t want sympathy or pity.

I was surprised that I completely forgot about it until hours later and then I had to think hard to recall the events surrounding it.  I was on my way to get sponsorship papers for the walk I am hosting.

My biggest issue with this is that there are at least five marks/bruises/scratches that I have no recollection of getting.  Chances are that if I had found these things tomorrow, I would not be able to connect them to anything and I would be wondering what happened.  I have been through so much in my life and really these past few years, but my memory does worry me.  I try not to let it be so big in my life.  I put reminders in my phone, I have a planner and bullet journal to help keep things straight.  Turns out they are powerless in the middle of a conversation where I can’t follow.  They are of no use when I am trying to recall details from five minutes ago.

The cherry on top if that I have perfect memories of how my brain worked before all of this and I feel sorry for myself that I have these problems.  Or maybe that I can remember the difference.  I feel stupid or less-than when my brain goes blank and I have to have the person explain to me what we were speaking about.

It has been difficult to “restructure my expectations of myself” because it feels a lot like lowering my expectations and that stings.  I want move forward with my life but so much about me had changed.  I don’t see, to operate the same.  This doesn’t always go across well with doctors because they feel like it is a psychological problem, but it’s stranger than that.

Unfortunately, because most doctors have not gone through the illnesses they treat, they can never truly get a view of what it is like for the patient.  They can read anecdotal evidence and read case histories but they cannot draw upon the knowledge that comes with actual experience.  For a few doctors this is fine because they have supernatural empathy and compassion.  In my experience, many doctors lack the interest or means to really understand the needs of a special patient.

Of course I have a compound list of needs, but I still need my doctors to look at me and see that I am scared to death that I am losing myself but I am ferociously hanging on because I don’t know what happens if I give up.  I have had these headaches for three years, been out of surgery for a little over two and if I live to see another 30 years, this doesn’t even cover 10% of that lifetime.

It is hard for me is knowing that there are other people out there, suffering in silence because they understand the possible implications of sharing these feelings with another person.  It sounds a little crazy if you say it out loud.  I mentioned it at my neuropsychological evaluation.  It did not seem to leave a positive impact on the doctors (two did it together).  They suggested that a lot of what was going on was my mental state.  NEVERMIND the fact that I have a brain injury and if it has altered my mental state it is a physical problem with behavioural implications.

Seriously, a doctor spent one day with me and his report has shaped a lot of my treatment (or lack thereof) because of the type of doctor he is.  I am not saying that he is a bad doctor because I think he very knowledgeable and thoughtful, but I feel that had I been allowed to have multiple sessions with him to do the testing, I would have had truer results and his assessment may have been more in-depth.

Now I am getting this test done again, one year later.  I have followed every recommendation that the neuropsychologist made and I don’t really feel that much better.  Emotionally I feel more at peace with my situation but that isn’t anywhere near perfect.  physically, my body is doing what it wants.  So, I just have a better attitude about it now.  Still, my memory and executive function and cognition are still flailing.

What I like about my new neurologists (I didn’t lose any, just gaining a family of them) is that they seem as interested in finding an explanation for the problem as I am.  They are committed to walking down the long road with me and doing whatever we can to find an answer.  I also like their honesty that we might never find a cause or be able to make a diagnosis, but it won’t be for lack of trying.

These are two of the most supportive doctors I have met.  I hope that they will be the ones who discover something that can help people with my type of memory problems.  I hope they are the ones who usher in a treatment that will allow memory to take place again and fill in the gaps in people’s lives.

There is nothing like being the only person who does not remember an event or conversation.  Now imagine being that person all of the time.  The “special” memories barely take hold if at all.  It feels shameful when my daughter talks to me about something and I am just blank because I can’t hold her words in my head.  I remember when my life was not like this, so that makes it even more distressing.  I just want to be able to share memories with my family and not have to digitize my life so I can read about it and remember it.

This is its own special torture.  I can’t keep track of time without memories to anchor it.  I want to be suspect of all time pieces but I know that the failure is really happening in my brain.  I am the one with a broken piece.  This is what I want doctors to know; I am not a problem patient.  I did not ask to be in a car accident, to be injured, to suffer, or anything that has happened since the accident.  If I have bothered to leave my house to come see you, it is because I know something is different and possibly wrong in my body.  My chart does not reflect a patient who goes to the doctor for attention or pills (ER doctors, looking at you),  I go for checkups, issues, and at times for pain relief when the normal routes aren’t working.

Here is where doctors and researchers can make a difference, though.  Chiari is in it’s toddler stages of research so I am guessing that there is much more knowledge to be uncovered concerning it.  Things are happening but not fast enough to make a difference to many of us.

Memory is vital to quality if life, especially when I am 36 and can barely remember the month.  How do I make my life memorable again?  How do we make that dream possible for everyone who has this problem?  I imagine that the first step is to stop shrugging it off when it is brought up and take the issue seriously.  It’s hard to talk about my memory deficiencies with someone who “forgets their car keys too” because they have just let me know that this is a non-issue to them.  Then I don’t really want to talk to anyone about it because some people will tell me snap out of it, some will not understand, and most will be dismissive (al least in my personal experience).

Imagine if people felt heard without condemnation!  It would lead to fresh life being breathed into counselling and therapy and the freedom to get help without a stigma or shame.  It would be amazing to break that barrier with everyone else who has been fighting for better care and be able to get the help and the cures we need.

If you made it this far, congratulations!  My writing used to be so much more organized and easily followed, but for all of my blogs, I don’t get them edited so that if any mistakes continually appear I can take note of it.  I am no longer ashamed to share my struggles with the world, so I believe that something good will come from making my experiences available .  At least, that is my prayer.