Wow, we brain tumor patients go through almost the exact same thing. I just read a very detailed blog about seizures and doctors and I was stunned to find out that our experiences are so similar.
So this morning I cannot sleep. I decided to write. Now that I am off chemo I am emotionally confused. Allow me to elaborate; chemo is basically a safety net and now I am off chemo I do not know what to think. I try not to concentrate on the burst headaches that I have. Fink explained this sensation is the nerves trying to fire or cross or something. Anyway the gist is these bursty things are most likely something I will have to live with for the rest of my life. I am okay with that. It is way way better than I used to feel.
Also, my memory and concentration is shot. When I just had ADHD it was fixable with adderall or some other meds. This TBI is not treatable with meds. That is why Pam is recommending I stay on disability for a while longer. I am actively working on concentration and memory. How can you work on memory if you can't remember? It is a vicious cycle.
So today was fun, went to barn in Wylie. Equest is helping me as well as the youth that rides. Helping me with my social skills, teaching me to look people in the eye. Also I have to remember how all the saddle parts go together. Basically I am not the same girl that worked on the track or on Czaria farm. I am working hard but it does not come easily. However I will keep with it because the horses keep me calm. My fave horse is Bunny, she is a Percheron Thoroughbred cross she is as huge as she is sweet. I asked what it is like to ride her and the response was it is like riding an elephant, she is very smooth though. Everything in texas is bigger.
Bigger except for the weather. That is my one complaint. It is very rare that we get a big beautiful storm. Both myself and my husband would love to have a screened in porch and sit on a swinging bench watching the storm. At least we have goals.
I cannot describe to you how in love I am with Michael. He is my soulmate period. I hope everyone can find someone that they are on the same wavelength with. We are such a lovey dovey couple that we can finish each others sentences and frequently say the exact same thing at the same time. I hope everyone can find someone they don't need to verbalize with to communicate. We are very very lucky. We are blessed everyday.
So this morning I cannot sleep. I decided to write. Now that I am off chemo I am emotionally confused. Allow me to elaborate; chemo is basically a safety net and now I am off chemo I do not know what to think. I try not to concentrate on the burst headaches that I have. Fink explained this sensation is the nerves trying to fire or cross or something. Anyway the gist is these bursty things are most likely something I will have to live with for the rest of my life. I am okay with that. It is way way better than I used to feel.
Also, my memory and concentration is shot. When I just had ADHD it was fixable with adderall or some other meds. This TBI is not treatable with meds. That is why Pam is recommending I stay on disability for a while longer. I am actively working on concentration and memory. How can you work on memory if you can't remember? It is a vicious cycle.
So today was fun, went to barn in Wylie. Equest is helping me as well as the youth that rides. Helping me with my social skills, teaching me to look people in the eye. Also I have to remember how all the saddle parts go together. Basically I am not the same girl that worked on the track or on Czaria farm. I am working hard but it does not come easily. However I will keep with it because the horses keep me calm. My fave horse is Bunny, she is a Percheron Thoroughbred cross she is as huge as she is sweet. I asked what it is like to ride her and the response was it is like riding an elephant, she is very smooth though. Everything in texas is bigger.
Bigger except for the weather. That is my one complaint. It is very rare that we get a big beautiful storm. Both myself and my husband would love to have a screened in porch and sit on a swinging bench watching the storm. At least we have goals.
I cannot describe to you how in love I am with Michael. He is my soulmate period. I hope everyone can find someone that they are on the same wavelength with. We are such a lovey dovey couple that we can finish each others sentences and frequently say the exact same thing at the same time. I hope everyone can find someone they don't need to verbalize with to communicate. We are very very lucky. We are blessed everyday.
Happy for ya AEJ, glad you can get out and enjoy the riding the horses. They are amazing arnt animals. Happy to see your coming along but remember just cuz your off chemo everything just doesnt snap into place it will take time but you will get there i believe it :)
ReplyDeleteSee ya around the internet lol,
Kyle W (Wink)
So funny - The GA storms are what I miss most here, in Seattle, too - none of that ozone clearing lightning and wash the world off down-pouring - used to love to go on our front porch with the fam, cuddled in sleeping bags and watch and feel the storms. Here, you mostly feel drizzle - sticks to you like sweat, turns the skies grey...
ReplyDeleteOn the other hand, much less in the way of truly sweaty days or mosquitoes to need a screened in porch for ; - )
re: the memory side effects
ReplyDeleteFrom what I was looking at last year in bioeng, there are a number of really cool new treatments coming up the pipeling that might be able to help with things like repairing shot brain tissue. (now keep in mind that we do not know what causes chemo brain yet - in fact, from what I understand, there is no good way to diagnose it at this pt besides patients describing symptoms - no specific scans or chemical markers, etc that we can use, for example)
For instance, we are getting pretty close to learning how to direct pluripotent stem cells to become particularly one type or another, and also how to better harvest and use the stem cells produced by every area of the bod every day (growing and... repurposing them, if u will) This might be cool for you if the issue really is something like a bad copy issue. What I mean by that is this: Every day, your bod is eating itself and regrowing itself - taking in old cells and spitting out new ones - like Kali, but for your bod's cells instead of worlds. ; - ) Tumors are pretty much a result of this process getting messed up in some fashion. When your bod takes things in and spits things out, if errors are introduced, they can be replicated more and more as the process goes on - like when u make a copy of a copy and the picture degrades over time - So, if your brain's copy wasn't being formulated right because it had a gloopy mess in the middle, getting in the way of the normal reformation process and that gloopy mess is now gone, it's going to take a while for the brain to grow back in properly, if it will at all - However, with stem cell injections at the site (or carried to the area using something like binding proteins and nanotubes, for example) the brain tissue can be sort of reprogrammed to grow back in a more stable, undamaged pattern - like u r copying from the original good stuff once again. : - )
Also promising might be looking at Alzheimer's drugs. There's a school of thought that says this might be caused in many causes by formations of plaque around the damaged brain area. Several of recent alzheimer's drugs have been very effective at helping stop and even slightly reverse the spread of said plaque. With a younger than avg patient brain, so a more elastic brain, like your's it seems like this might prove a pretty good shot - if plaque formation is the issue.
As something simple you might try at home, if it would not interfere with anything else u r on: niacin supplements are great for circulation help, and that is a bonus for the mem, as well as the healing process. : - )
Best of luck,
H