Mystery Diagnosis Chiari episode

The Discovery Channel Mystery Diagnosis episode featuring Chiari. Dr B was my surgeon for my tethered cord release.

http://www.chiaritvspecial.com/chiarivideo.html

I had never seen it. It was pretty good and shows how hard the patients have to push to get diagnosed. In this case, it was the mother. She watched her daughter wilting away before finding The Chiari Institute.

The day in the life of a Chiarian

First off, I do not want anyone to feel sorry for me. That is the last thing I want. However, I want awareness...True awareness of what we go through on a day to day basis. Usually when people ask me how I am doing, I give that faint smile and say "fine" since they really don't want to know how I really feel. So here is some of what may go on in the my day as a Chiarian:

I wake up with my family almost every morning at 6:30am. Some mornings I can not physically get out of bed but most, I force myself. I do this to have some sort of normalcy. My body is already a 7/10 on a pain scale. As I move, it gets a little better. The pain is in my neck, major joints, headache, nausea, feet, and hands. I find great pride in making coffee for my husband and lunch for my 8 year old. Hey, it may be the only thing I get done all day. I get to see my husband off to work, make sure Weston brushes his teeth makes his bed and the usual morning routine. This school year, I actually get to drive him to school in the mornings. Another thing I do every morning is make my bed. For some reason, it feels normal.

Wow, that is a lot of energy used or spoons as the chronically ill call it (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I usually lay back down in bed or on the couch for an hour or so. Showering daily is a thing from the past. It is not physically possible. Then I prepare for whatever event I have scheduled for the day. By event I mean, what kind of doctors appointment do I have for today? Could it be my rheumatologist, endocrinologist, neurologist, primary care provider, internist, general surgeon, neuro surgeon, occupational therapist, physical therapist, cognitive therapist, visual therapist, or just the plain ol therapist to deal with all of this?

At first they had me going to so many damn doctors it was like a full time job. I had to say, "STOP! I am tired. And, this is getting expensive." Even at $20-30 co-pays, it was adding up to hundreds of dollars a week. Now, after seven months of therapies, I am down to Occupational therapy for fine motor skills of the hands. When I go out of the house, it is a major event. By the time I get home, I must lay down again. I do take medications, on a daily basis, to help prevent migraines. However, the pain from everything else is still there. I do not take anything else if I have to drive. So, I push through, just like most others with Chiari. It does not mean my pain level is any lower.

On days that I can not get out of bed, I sometimes am unable to lift my head. Other times, I am physically unable to walk. My brain tells my feet to move, and they do not move. It is a VERY scary thing. And other times, I just don't have the energy to move. As a nurse, I heard people complain of "chronic fatigue" and I often wondered if it was a real thing. Guess what? IT IS A REAL THING! And, I had asked my doctors for years about it but never pushed it. I thought they would just think I was "crazy". When I did talk to them they would say things like, "You are a busy working mother" or "You are going to school". But I could never get enough sleep!

When dinner time comes around, I quickly try to throw something together. By this time I am on sensory overload, my head is pounding and my pain is starting to increase. My tremors begin to also escalate. It is difficult for me to stay in the same room as my family due to lights, sounds, and other visual stimuli. So, I usually end up in my room for most of the evening. I hate taking any pain medications due to the way it makes me feel and don't usually do so until bed time. by then I am usually 9-10/10 on a pain scale and extremely nauseated. Many nights I cry myself to sleep. No one wants to live like this. It is so isolating, even from your own family.

Another thing that I have had to endure is cognitive function deficits. I used to calculate medications in the middle of the night. Now I struggle with helping my 3rd grader with his math homework.

These things are REAL and happening to hundreds of thousands of people right hear in the US (And, possibly millions around the world). It is sad that many doctors know nothing about it and some are not willing to learn. It is my goal to educate as many as possible. Many of my friends are in the healthcare field and have listened. For that I am VERY grateful. I get messages and calls from time to time stating this. I also get phone calls and emails from newly diagnosed patients that do not know where to turn or where to go. This give me hope and some purpose. I know that due to my sister and my work that at least 5 people have been diagnosed. That is something to be proud of!

Please join the fight by walking on September 17th. Find a walk near you at ConquerChiari.org or sponser me at
https://www.conquerchiari.org/ccwaa11/kellicarter