Physical Involvement

I apologize first and foremost because I am going through mental HELL right now and I am in a lot of pain. I have been crying for the better part of now nearly 36 hours and I am so beyond tired and so beyond fed up with it all that I (also very literally) cannot keep anything straight in my head.

I am hoping this will prove to be somewhat therapeutic and get me to stop crying somehow … but I am just going to start naming body parts and problems that I have had over the years … I don’t have any idea how far I can go today and I’m sure I will have to come back to *edit* this for a more thorough list, but here goes:

Head – severe concussion; could not watch TV, read, look at a computer, or drive for around 6-7 months. I was treated by the Concussion team who treats the Steelers (back in the day) and I am forever thankful that I did because just from that one concussion (I had to wait at UPMC Shadyside ER for about 8 hours – yes, that is correct – to get my head scanned to check for the concussion) they test your “starting” cognitive response and speed compared with “normal” stats for a person my age, my intelligence level, etc. Basically, when I first went in, my results were so bad the doctors told me NOT TO START AT ANY SCREEN, NOT TO DRIVE (I broke that rule once and ended up in the grocery store when I was grocery shopping … and I was down an aisle and I had to call my mom because I forgot where I was, I forgot what I was doing, and I was terrified.), etc. I did get through and, again, I am thankful to the doctors there who did help me to heal while I was there and also while I wasn’t.

Seizures – I don’t even know when the first season I had was. I know when I was much younger I was put on Topamax for the seizures and it did help a lot. Then I had a really bad episode after taking Tramadol … and since then, most of my seizures have been ones in which I have been completely aware of what is happening (driving at winter through a part of the highway were the tall, straight trees cause a “flashing” effect which prompted such seizures), This year, after I caught the flu (or whatever it was ) in mid-Feb. (I ALWAYS keep Tamiflu on hand and I ALWAYS GET A FLU SHOT – YOU ALL NEED TO DO SO AS WELL, ESPECIALLY THIS YEAR … I WISH I HAD CERTIFICATION TO GIVE IM SHOTS TO OTHERS BECAUSE SO MANY PEOPLE ARE JUST SCARED OF THE NEEDLE AND I KNOW THAT I CAN DO IT PAINLESSLY … which doesn’t matter because I can’t and we all now know we cannot really change the minds of others, even if they are your best friend(s). But anyway, when I got sick in February, I started having seizures where it would feel like the ground was falling out from under me, when I would see lights flash when there was nothing wrong, &c. I think having seizures of various kinds (the one with the Tramadol was AWFUL; the full convulsing and shaking and biting my tongue … and I had to go through that alone because my jacka$$ boyfriend who wasted nearly 6 years of my life was too busy with his family to come help me out until very, VERY late….). are pretty “in line” with having Behcet’s.

Chiari II Malformation – although this is supposed to be something that happens in kids (the Chaira II, that is), after years and years and years of head imaging showing NO tonsils herniating downwards, a hospitalization that I was at because of aseptic meningitis as well as the optic neuritis showed that I had “suddenly” gained some kind of “Chiari Malformation”… but it had never been there before.

I have so much more to add just about my head … but as I mentioned, I am a wreck, so I am going to try to do something that will help me feel a little better … I hope. I will be back to either work on this list or just keep starting new ones as body parts “progress.” This is NOT going to be a short list either which is why I am taking quite a bit of time to make sure I remember to get it all down.

But yeah …. still crying. Not doing well. I hope you are all feeling happier than this (ALWAYS; I NEVER wish this kind of ‘I want to jump in front of a train just to end it’ mentality to hurt any others I know, especially those who are struggling….) and I hope you are staying as healthy as you possibly can in every way. Thank you again and remember, MY HEART IS ALWAYS WITH YOU.

Be back soon.

❤ Always, Beth


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