Pain Unthinkable

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Chiari is pain unthinkable

When the headaches began they were small blips on the radar and as time went on they became longer, stronger, and more debilitating.  Three and a half years after decompression I still suffer from headaches that keep me laid out for days.  I still have nausea that may be one of Earth’s most powerful sensations.  Added onto the melody of Chiari head woes is the harmony of other dysfunctional systems of my body that cause discomfort or limit my life.

Everything in my body did it’s own thing after my surgery.  It has resulted in three years of painful tests/procedures that often are repeated or are peripheral but need to be looked at.  I have been poked, prodded, electrically stimulated muscles, the endometrial biopsy that almost made me rethink life, and most recently this colonoscopy and upper endoscopy.

I won’t ruin all the fun because this is going in the other blog 

Needless to say, they use the word “discomfort” in a VERY deceptive way!

There are times that my body is stewing in pain and at some point it doesn’t matter because everywhere hurts.  I prefer to stay home and experience this feeling where I can complain and fall asleep.  There are times when I am able to distract myself but I am often left alone with the pain.  Not that there aren’t people around me who care for me, but no one can really come inside my body and help me bear the burden of pain.

These are the times I talk to God and wonder how I am supposed to be of any use to the world if I am laid out in pain.  I am at the point of giving guardianship of my daughter to my sister because I need to be able to get through this time in my life without scarring my daughter.  She has had to deal with a lot, so we all agree that it is in her best interests to be away from the medical whirlwind that is my life.  Luckily, she will be staying in the state and so we can still hang out and have a close relationship.

Chiari and all of it’s baggage has hurt my body, my emotions, and my mental state.  It has taken two years of therapy (psychologist and psychiatrist) to realize that the past is gone.  I will never be the old me.  My body may always hurt, but that doesn’t mean that I can’t learn to cope and make the most of my better days of health.  I just chaired a walk and I am still recovering because I had this procedure three days later.  These days I have to remind myself that even in my pain, I can draw a picture of how I feel and write about it and that will help me to be distracted and to hopefully form some sort of memory.  At the very least, an accurate record of what I did and how I felt about it.

The pain of my Chiari has managed to infiltrate every part of my life and body, but I am not going to let any of what is happening to me stop me from talking about it, spreading awareness about it, and getting out to make things happen.  I realize that nobody knows who I am, but in the next year I hope to change all of that.    I encourage you to take an action to spread awareness or to educate.  Blogging is a great start and you can find many ways to advocate.  It’s time to change the face of patient care to something a little friendlier and more accepting and understanding.  I am not sure if I am a log, tinder, or a match, but the fire will be lit and I will be there fighting for better care.  It’s time to infiltrate Chiari, learn it’s secrets and destroy it’s secret lair.

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Stage 4: Anxiety And Depression

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Was there ever a more perfect pair?  In my personal experience, depression digs the rut and anxiety makes you afraid to get out.  I have spent my life defining myself by my ability to accomplish.  The accomplishments themselves were not nearly as important as the ability to do it.  I COULD work on a car, I COULD landscape a yard, I COULD clean a pool, I COULD take 9 classes and work and volunteer and be a mom all at the same time.

As the realizations about my mental, cognitive, and physical status began to sink in, I felt like I sank into the earth.  Not able to do the things I was used to being able to do, I no longer felt useful.  The things I love became things I didn’t want to talk about or hear about.

I got tired of hearing that my friends were getting married, buying houses, going on vacations, living their best lives (*through my personal lens, which was very out of focus*) and here I was dealing with headaches, unable to use the bathroom normally, and unable to get through the day without multiple naps.

It was like the blackness that swallowed me in anger left me bitter and depressed and unable to see value in myself.  Then my eyes were veiled in bitterness and I saw value in nothing anymore.  Making it to the point where I felt like I was just existing was the lowest place for me.  Just the disappointment of opening my eyes everyday and coming back to the realization the ‘this is my life’ was changing my thought pattern and things were getting dark in my mind.  I couldn’t fix anything going on, so how was life worth it anymore?  So, I decided to seek help and get a psychologist and psychiatrist.

If intervention had waited longer, I might not have made it.

Interestingly enough, my psychologist focused on my anxiety.  If I was depressed about something I could get specific about, then she would turn to the anxieties surrounding it.  I have (as of writing this) been in therapy for 10 months and the one thing I always try to carry with me from therapy is that I am prone to try to repair and repair instead of looking for a new solution or viewpoint.  I am anxious to know if my health issues are going to be permanent but if they are, so what?  I have to learn to live with them.  This is obviously over-simplified, but I am always willing to at least try the methods and tools my therapist gives me to help look at my thoughts from multiple angles.

One way I do that is by writing.  If I am very anxious about something I will write it down and read it to myself and imagine one of my friends wrote it to me for advice.  Seems silly, but it works for me because I often feel like other people deserve better than I do, so it helps me put my thoughts into a more realistic perspective.  I deserve to be happy or safe or cared for just like any and everybody else.

Still, I have plenty to work on in therapy and I would not say I am totally out of this neck of the woods.  As my treatments change and we test and get answers, I will have other woes and fears.

Many people don’t realize that you can go through this whole grief process with every symptom (I have about 17) and after every disappointing specialist (I have about 14) because each new thing takes something else away that you now must mourn.  The feelings overlap and mix and can be overwhelming.  My support system and my medical team all keep a close eye on my depression and anxiety because I won’t be able to improve if I lose hope.

The worst anxiety I have is that I will have these symptoms forever.  Headache and nausea for the next 20 years is an unbearable thought.  However, I currently temper it by telling myself that I have made it this far without answers and whatever happens I have my family and my faith and I can cross some bridges when I get there.  I only have to worry about my headache today.  Tomorrow will take care of itself.

I am not saying these are the universal experiences of anxiety and depression.  I only know what I go through.  However you’re feeling it, I encourage you to seek professional help if you have feelings of depression and anxiety.  At least find someone who you trust to get your feelings out so they can be validated.  Depression is not a ‘phase’ in life, it is a stage that must be addressed when it is where you are.  Same with anxiety, it is a stage that needs to be addressed.

If you find yourself being the third-wheel of this strange pas de deux, try not to get caught up in their dance.  The spotlight burns your soul and turns you into a shell of your former self. Spend your time on this stage and figure out what is the root of your depression and anxiety and come up with a plan that will restore peace of mind to your life.  You may not get the diagnosis you desired, but there are people who have it worse in some way but have rediscovered the joy of living. I want to enjoy my life again and I want you to also.

Eternity

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Waiting for my next appointment like…

For 27 months my life has revolved around going to doctors, imaging, testing, therapy (of all kinds) and it has been a neverending schedule of this.  It has been a couple of months since I went to a doctor aside from my psychologist and my speech therapist.  I am waiting for the big appointment.  The one I have been after for 18 months.  The one I have been electrocuted for…several times.  It’s only taking an

ETERNITY!

I am getting involved in some other volunteer activities and slowly trying to figure out what I can do, what I want to do, and where I want to be.

For now, though, I wait.

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. 

The Constant War

Because I tend to look “normal” it is difficult for some people to accept that I fight against my body everyday.  Most days I just take a little longer to complete a task, but at times, getting upright is a battle that I can’t win.  This past Wednesday I had to go to the Psychologist for my disability determination.  I woke up to a familiar stabbing pain that the base of my neck.  My brain was (again!) trying to carry out it’s escape plan.  The pain was enough to give me dark circles under my eyes, a poor outlook on the day, and I had to pee so much (a typical symptom for me).  I went with my sister and my mom and explained  to a complete stranger my illness, its unpleasant side effects, and how it has affected my life.  It was an overwhelming hour.  I think she got a good idea of how Chiari messes with your mind/memory/focus/concentration.  Everyday, I wake up on the battlefield of life, fighting myself to save myself.