MY BRAIN INJURY
I was assaulted by a client at work who first took a book bag full of books which had a long handle and ran swinging it and hit me in the back of the head on the right at the base of the skull. The client who was wearing army boots then followed up with a kick to my left ear. My brain which had been going forward and backward was now going all over the place inside my skull. It left me with a brain injury which included chronic fatigue, stimuli overload, true vestibular issues (I had to use a walking stick for 5 years as I would constantly fall), at least 7 visual processing issues, audio processing, memory issues, word find, vertigo, nausea, then due to vegus nerve damage (Vegus nerve is rarely damaged as it is deep) I developed Gastroparesis (paralyzed stomach), RSD (Reflex Sympathetic Dystrophy which is the most painful disease known in the world).
The assault was over 15 years ago. I had to go back through crawling, walking, talking. It has been a long journey to get to where I have gotten. Most days now I could run in heels however some days I wake up and end up on the ground crawling or falling into the walls trying to walk down the hall. I have learned the most consistent thing about brain injury is the inconsistency of it.
The 3 most debilitating are:
1. RSD - I have it full body with my right leg the worse. Most of my body feels as if someone poured gasoline on me and lit a match. My right leg feels as if all of the skin has been burned off and I am left with raw unprotected nerves. My clothes have to be picked by materials I can handle. I can never wear long pants, shoes or socks. Yep I am in flip flops and capri pants even in the snow. I am forever asked "aren't you cold". Yep I am freezing. However it is the lesser of two evils. I can't use sheets. Instead I use a particular type of blanket I can handle as a bottom sheet and then either a cage over me to hold the covers off of me yet hold in the heat or a space heater in the room turned up so I can be uncovered. There are also other complications I have from the RSD I lose use of arms and legs. Left arm goes first, then right, then legs.It is a fine line between needing to use my limbs so they don't atrophy and not overusing them so they hang there useless. I forget (I have a brain injury what do you expect? lol) what it is in my throat which relaxes too much causing me to choke on medications and when I am trying to sleep. Every night when I try to fall asleep I go through the choking. Some nights I dream I am drowning and can't get my breath then wake up choking. I now have scar tissue in my throat.
2. Gastroparesis - It was obvious right away something was wrong as I gagged just from the smell of most foods. My poor husband had to cook outside for around 3 or 4 years as I couldn't handle the smell. It took 2 years for them to diagnosis. In the meantime I had dropped down to 106 lbs and was putting in 6,000 calories a day to maintain. I know some of you might be thinking it is a nice problem to have being able to eat so much and weigh so little. Unfortunately my body wasn't taking in the nutrition and hardly any of the calories and I was told I was white as a ghost a lot and I was blacking out. Plus unbeknownst to us I was doing damage to organs since I was eating things I shouldn't have been. I tried to eat healthy items which didn't make me sick. It took 3 years for them to get me gaining weight by releasing enough pressure off the vegus nerve through cranial sacral therapy. I haven't even been able to drink tap water since. I can't eat fruits, vegetables, meats or most foods. Pretty much just plain white carbs and a little cheese.
3. Chronic Fatigue - At first I slept 20 hours straight every day and was drowsily awake for 4. We were later told I was in a waking coma. I then dropped to 18 hrs, 16, 14, 12 where I stayed for a lot of years and finally down to about 10 for a few more. Then all of a sudden about 9 years post I switched to insomnia where about every 2 months I would have a week were I would sleep less than 8 hrs for the whole week and didn't sleep much in between. After sleep study and working with them I sleep better though still wake up a lot due to RSD pain. Throughout it all no matter how much I have slept I always wake up feeling like I have been run over by a Semi truck. Everything I do exhausts me. I usually have a hard time staying awake to eat.
NEW TREATMENT OPPORTUNITY!!!! FOR THE FIRST TIME IN OVER 15 YEARS I HAVE HOPE FOR THE 3 MOST DEBILITATING TO BE RESOLVED!!!!!
Dr. Rachel Frontain of http://northwestfunctionalneurology.com/
has offered to treat me Pro Bono. They have a completely different approach, work with tools not many others have and work on the issues I have. There are only about 300 Doctors in the US who do what they do. 4 of them are at the same clinic. People come from all over the world to see them. They do a week intensive where I will be at their clinic from 8:30 am to 5 pm daily. I met Rachel and Dr. Z up at the Oregon Brain injury conference this month. They think they can help me. Now we need to get me up there as I live about 5 hrs away and get me a place to stay. I have a place for the first 2 nights. I still need a place for the last 4. I am unsure at this point how many though I believe they also require 3 to 4 follow ups which I think are just a day. I will find out more when I go there. They move fast and I am to start on April 1st with the week intensive.
WHAT I DO NOW
besides the 5-6 Dr. appointments I have a week I:
1. Have ran the local brain injury support group for about 12 years now.
2. I put on a 3 day camping, rafting, hiking trip for people with brain injuries and their families. I only charge $25 each to attend and get donations to cover the rest of the $200 each needed. Since 08. If you would like more information on the camp pm me or go to the “Oregon brain injury camping, rafting, hiking trip” facebook page.
3. I teach DNA genealogy at the local genealogy library. I facilitate an advanced group and teach a beginners class. Over 3 years now.
4. I assisted in an elementary school when I was physically able for 2 years.
None of the above are paid however they are something I can do as they are each a little bit here and a little there. They are a way I can give back. Even when I worked 60 or more hours I did volunteer work.
Thank you for taking the time to read this and your consideration in donating. Every bit helps.
In the meantime I am dreaming of salads, raspberries, sheets, long pants, shoes and socks.