Hi ya'll! I am new here. Well, here goes...
I injured my shoulder at work and eventually had surgery on it. During surgery, I aspirated and ended up in the hospital for over a month with double pneumonia and the lower lobes of my lungs collasped. While there I suffered a light stroke, I expired and was revived(I never got anyone to say how long). I suffered an oxygen deprivation brain injury. While in the hospital all that time I was being given huge doses of ATB and cortisone IV. When I got out I had asthma, diabetes, all of my levels were off (thyroid, liver, kidney, etc). When I tried to walk my legs pumped? (like I was trying to push up with my legs...i do not really know how to explain). I couldn't walk and had to use a wheelchair for 8 years. My hair came out in huge clumps. Since then I have also had a staph infection on my foot, and spinal menningitis. I do not well in math(I use to LOVE math) and can not read and retain. I have lost some older memories and have a horrible time with new memories. I have to rely on my daughter on how to get to and from my husbands job, because i can not remember how. (new memory) I have "brain ****s" LOL! where names of objects will not come to my mind(this comes and goes). My family is use to me saying thingie, thing, that, ummmmm, etc A LOT! I have horrible pains in my legs, like charlie horses that lasts for days some times. I have instances that I try and reach for something and my arm ?dies? gives out and if I am holding something, it will crash to the floor. It comes back in seconds, and my legs and feet do this also. My thighs and upper arms are always cold to the touch, but I am burning up! I feel as though I am going to implode from the heat I feel. Sometimes, when I am hurting the worst, my face will be bright red and burn. If I get in the sun, my face will turn really red and burn and I will break out in little bumps where ever the sun shone on me. (I don't have to be in the sun for 15-20 minutes.) I get so hot on my hands and feet that I have to run ice cold water in the tub and just stand in the tub, and and put my hands and feet in the cold water for relief.
The docs are really treating symptoms, Flexeril for spasms, neurontin for restless leg and the weird sensations of water being poured on my legs, lisinopril for kidney function, amitriptyline for pain and sleep, darvocet for pain, insulin and pill for sugar(under control, yeah!). I am so disheartened and frustrated. I know I am blessed, don't get me wrong. I just think there should be a name to put with this torment and an end to it somehow! I can walk now, balance is still off sometimes, but I CAN WALK! I can read bits at a time, but if I want to remember it, I write it down or email myself! LOL! I have 2 special needs kids. 1 with Autism and bi-polar with psychotic episodes, ADHD, and OCD and 1 with Aspergers(a form of Autism), bi-polar with psy epi's too, seizure disorder, really bad foot problems, and glaucoma, so I have got to bring my A game, even if I feel like crap X's 10! After a while when you don't fit into a "textbook case" of whatever, it tends to get you down. Maybe what I even am asking for here is a moot point. I know what I REALLY want is sanity, pain-free days, a DX, a cure for Autism Oh! and world peace.
No, but really, if anyone hasn't went to sleep while reading this and can offer suggestions, a cure, a miracle, etc. Please feel free to respond. I will now email myself this forum and maybe I will remember to come here and see what you good folks have to offer. Thanks Annette