Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.

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Neurologist And Neurological Mess

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To the Neurologist!

I love my regular neurologist, but I FINALLY got an appointment to see my memory neurologist and I couldn’t be happier.  I called on February 4 and got the choice for an appointment on the 11th or in April.  Trust me, it was not a hard decision.  I had to reschedule another doctor appointment, but it is worth getting to see this man who I have prayed so hard for.  I and really excited to see what he has planned for my next steps.

Going to the doctor is usually not for a fun purpose, but I am just hoping for a productive outcome.  I know that we have a ways to go, but I hope that we have made clear progress in some direction that he can work with.  God willing, we will start on the road to Cleveland and see some super specialized doctors.

Be thankful if you have the opportunity to see doctors and get the care you need.  I know my visits to this particular doctor run about $600, so be thankful for every insurance and discount…I KNOW I am.  I would never be able to afford this care on my own.  Like I have done, use every option and benefit available to you to better your health.  As long as it is in your budget, go to physical therapy twice a week and do the exercises at home.  It helps with just daily mobility and the program is tailored to your body by someone who had to do some schooling.  See a dietitian or nutritionist to help make reasonable meal and food choices that will assist with specific health goals.

I am not saying to abuse the system, any system, for your gain, but if you need help doing your hair, physical therapy helps in a longer term way.  Using your body in a healthy way and eating well can help keep you off a lot of medications later, so take care of yourself and use the resources available to you.  This includes mental health.  It is OK to see a therapist.  They can be very helpful and they aren’t always long term.

Last, if you think something strange is going on in your body, talk to your doctor until they listen (that’s how I got brain surgery!!) because sometimes it takes some convincing, but eventually, you will get the right doctor and things will begin to fall into place for you.  I could have suffered serious damage to my spine had I let the pain continue.  I was lucky that it debilitated me and I was forced to go to the doctor.  Use your resources.  That $10 visit cost about $150K in hospital and surgeon fees, but my insurance at the time paid 100% for hospitalized, necessary surgery.

So, That’s my story.  Expect an update (outside of normal release days) about what happened!

HOW LONG?!

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I wonder if they will ever know?.

It has been four years since the accident, and three since the surgery.  Between then and now I have had a certain set of neurological symptoms that keep deteriorating.  I have had my concerns since the beginning but now it is center stage in my life and it is affecting me and my life and my family.

It’s a lucid madness that allows me to understand what is happening and also not be able to do anything but watch as my cognitive function fades and my memories disappear and hope that we can stop it before I lose too much.  It is my living nightmare.

The neurologist is hoping that this medication that he put me on will help improve my quality of memory.  I am hoping more than he is.  Really, I think he is trying to see if my memory loss is following the same pattern as Alzheimer’s and Dementia.  This is my theory as he was clear that we are doing a light treatment since we have no answers as of now.

No answers.  I see him again in 4 months.  In that time, we will see if there is improvement, no change, or decline in memory.  We haven’t even touched on the seizures.  We increased my valium to see if it helps suppress the nighttime seizures.  Now we wait.  We keep notes, we live life, and we wait for the new year to bring us news about my health.

This journey involves a lot of faith.  Faith that God isn’t trying to drive me crazy and that He has a plan.  Faith that my family will stick with me no matter how insane this situation becomes.  Faith that my doctor has a gut that is correct that he has faith in.  Faith that I am going to look at this situation one day and see every blessing that isn’t currently apparent to me.

Everyone’s journey is different.  My hope for other people who suffer with medical uncertainty is that they will have the faith to continue on through their journey and bring to light all of the bottle necks, red tape, and other events that make this process more difficult, longer, and emotionally draining.  Be the change that you want to see.  Hold open the doors you pushed open.  It is important that we support those who do not have the support system or voice to speak out.

I hope that one day we will have answers for Chiari Malformation and it’s many comorbidities, but until then, we are the advocates who have to keep the wheel of change turning and even speed it up.

Dancing Brain

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Hi! I’m Brain! I am showing Michelle my new dance move: Electric Boogaloo! Also, dancing makes me tired, so we gonna sleep 16 Hrs. XOXO Brain

Just when we thought we were getting closer to the answer, WE WERE!!  Turns out, that answer was a little scarier than we thought it would be.  When your doctor says “seizure” you always hope it is in any sense but about your health.  But, life, right?

I remember walking out of the office thinking that while that explains so much, it can’t be true…right?  That was a Monday or Tuesday.  Thursday my stepdad watched me have a clonic seizure.  Friday, I went to urgent care because I pulled several back muscles and so I went home to relax and I had one in the pool.  It was too late to call my neurologist.

I visited a new friend who was passing through Las Vegas and drove home the longest way so that I could see all of the beautiful mountains and the city from the driver’s seat one last time.  I knew I had to call and let them know what was going on, and I knew that they would suspend my driving privilege.  When I got home, I called.  I sank as they took driving, swimming, cooking without supervision, showering in the house alone, going on walks alone, and anything too stressful as that could trigger symptoms.  Basically, I was reduced to a ten year old.

The scary part is never knowing, as many seem to happen at night, then I am tired and groggy and feel like I have been beaten.  Two months of tests, imaging, and waiting have halfway passed and I am getting closer and I think that we might actually get an answer.  I also understand that medicine is not an exact science and they are just as likely to be as lost as I am.  I want so badly to have an answer.  Even if the answer is that nothing can be done.

For now, I am settling into a life that I feel is very constraining and I wish I could just skip this whole part.  I hope that I can remain strong enough to make it through this process.  It is horrible knowing that there are so many other people going through the same things as I am, but if my struggle can make a difference one day, then I am more than willing to keep plodding along.

It must be very easy for people to see me and think that my life is peachy.  I bet if they read this and my other blog, they would see me from a whole other point of view.  They would know that I am just a human who is scared of life right now and really needs to be understood.  That is life, though.  We have to continue on, even when the journey is awful.  Especially when the journey is awful.  At least I do.  For a little while longer, at least.

Not So Helpful After All

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Your chakras are blocked. You need to meditate and focus the energy of the universe on your blocked areas so you can open the path of energy flow. Once energy is no longer pinned in you head, the headaches will disappear. **Okay**

There is nothing like the unsolicited advice of someone you barely know.  You desperately want them to go away, but in kindness you listen to them.  They often tell you something that will make you question whatever type of relationship you have with them.  You hate to see yourself as mean, but you secretly wonder why they haven’t transcended this corporeal existence for the more ethereal experience of knowing it all somewhere else.

This is me having one of too many conversations about how I can help what ails me.  I know people are trying to be nice, but they forget that I have probably done more research on Chiari Malformation than they have since college.  I have a team of neurologists who likely know more about my condition than anyone who has recommended that I ferment and then drink something.

I know people are just trying to be helpful, but you really are no help when a subject is beyond your understanding.  So maybe research Chiari and ask me some questions instead of telling me what you think is best for me based on your aunt’s seasonal sinus headaches.  All headaches are not the same.  They hurt differently, are brought about by different circumstances, and are treated (or not) in various ways.  They are all valid sources of pain, but each deserves its own light.

If you have found yourself giving advice to people for a problem that you don’t have or don’t have a degree in, you might make sure you know what you are talking about.  You might instead have a relative with Chiari that you have cared for.  Then I can relate.  Just, be mindful that the person you are talking to likely knows WAY more about their condition and comorbidities than you do.

If you have found yourself on the listening side of someone who knows more words than facts, don’t be afraid to stand up for yourself.  Just stop them at the beginning and don’t even listen to them pontificate about subjects beyond their grasp.  Your time is better spent educating that person instead!  Give them a bit of knowledge and hopefully they will be curious enough to look it up later.

I spent maybe the first year after my surgery (and a bit before) listening to people tell me what they thought I should do.  Essential oils instead of brain surgery.  Someone told me this was a better idea but then refused to take care of my medical bills if the oils failed.  Someone asked if I had tried (you knew it was coming) KALE!  In fact, more than one person has asked about it and that is why it upsets me.  Just because it is healthy doesn’t mean it will keep my brain in my skull.

Eventually, I just stopped someone when they asked if I had tried kombucha.  I guess that is where I drew my line.  I told them that I allow my doctors to lay out my medical choices and I do my own research.  They seemed a bit put off, but I felt good for speaking my mind and not listening to a holistic rambler talking about nothing useful.

Now, that is not to say there aren’t people who know what they are doing or talking about.  These people tend to make sense understand how the human body works.  I am not talking about these people.

It’s the meddlers.  The ones who can’t pronounce your illness but can tell you how it was created in a lab and they know the secret cure.  The cure that cures everything.  Probably something that will drive you up the wall like “kale”.

Just know that you aren’t alone out there, suffering from the fantasy based words of a do-gooder.  I know that many people deal with this everyday, so lets start to use the opportunity to educate instead of rolling our eyes until they get stuck or sighing heavily until we hyperventilate.   Many conditions can be explained to the general public in the time it takes for someone to explain how misaligned chakras cause headache and indigestion.  It’s a better use of time and oxygen and you have now spread awareness!

The Pain Is Everywhere

This is a point in my journey I could not have predicted. I have never considerd myself a “happy” person, but I have always felt that I had some direction and motivation.  

The loss of my job, my memory, and some of my higher functioning has left me feeling robbed.  Chiari has stolen the things about myself that made me feel like my life had value to me or made me feel valuable.  

The hard part is staying transparent.  I began this journey so that those who came behind me would have a record of the trials I faced in case theit situation was similar to my own.  

I have a complicated history that involves some childhood horrors and now I have lost my coping mechanisms (work, work, work, work, work).  So, at my neuropsych evaluation it was recommended that I go into long-term therapy with a PhD level psychologist because now I have to work through my current life change and wade through my past so it can be fixed.  

That sounds reasonable.  Still, on the inside it drives me into an anxiety attack just thinking about it.  I don’t want to re-live that part of my life, but in a way I already am.  I feel just as trapped and hopeless as I did when I was a child, but with the added bonus of having my own child and remembering independence. 

Slowly, the enjoynents of my life are fading.  I am checking in less often.  The neuropsych eval stated that my intelligence surpasses 99% of people in my age range.  At times, I have the clarity to see that I am severly depressed and I am getting worse quickly.  I recognize the trail of red flags that my mind is desperately flinging all over, anywhere someone will look.  

That is why I have chosen to keep my battle as public as possible (without incriminating anyone or tarnishing anyone’s reputation) because it is time to stop being ashamed.  We are not ashamed of diabetes, heart disease, stroke, broken bones, or any other health problem.  We should not be ashamed if our brains aren’t functioning well either.  

So, this is why there have not been any updates.  I haven’t cared enough to do any.  I have barely cared enough to get up every day and pretend like I want to be here.  I hope that as I go through treatment, this cartoon with flourish and once again be what I created it to be.  A mockery of the crazy things people aay to me. 

Smile: Adventure Ahead

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Autonomy, worth, friends, self-esteem, treatment plan, life, love

There are plenty of questions that linger after Chiari Decompression, especially if your life doesn’t return to normal.  My friends often can’t understand that my brain can no longer do the things that it used to be able to, and no amount of believing in myself changes that.  Then I question my autonomy.  Will I be able to be a productive adult for the rest of my life?  Will someone have to keep an eye on my finances and everything else to make sure I don’t become destitute because I can’t remember to pay bills?  What kind of life does that make for me?  Is that a life worth living? What if there is no treatment plan that will take away my symptoms?  Will my friends tire of having a “sick-friend” after a few years?  How will this all affect my self-esteem?  Will I be able to live with myself and not resent this brain of mine?  Will anyone ever be able to love someone like me? What If I deteriorate?  Would it be fair to the other person in 20 years?

Unfortunately, it is easier to ask the difficult questions and languish in self-pity than it is to be bold and confront the new normal with a big smile and only the expectation of adventure.  I am a Christian.  I regularly attend my church.  I am in ministry inside and outside of the church.  I love Jesus, and I believe that all of this is happening for a reason, but that doesn’t mean I don’t think and process life like a human.  I particularly deal in grief and the grieving in ministry and it has given me a much wider perspective about what I am going through.

I have lost a lot of my life and I am sad about it.  Of course I have days where I am overcome by the magnitude of how different I have become.  And -this- is what people don’t understand: I am fundamentally different than I was before my head was opened.  I don’t even think like I used to, but I have memories of thinking and being a certain way.  My emotions are foreign invaders which have occupied my mind and now everything is filtered through them.  My drive to accomplish and accumulate had turned into a drive to love people and give away what little I have.  And this is just the beginning of the changes brought about by Chiari and the surgery.

So, when I feel sad, I try to find someone that I can help, so that I am not focusing on my own problems.  When I can’t remember my worth, I study the Bible and I am reminded that Jesus died for my sins.  When I wonder if I will be able to take care of myself, I remember that I have a loving family that always keeps my best interests at heart.  I may have to deal with pain and uncertainty, but I will try to do it with a smile and the expectation of adventure a little more.