Thursday, August 1, 2013

It Is a Flare? Thank You Stress!

So dang sick of it. I am going into a flare, is it scleroderma? Is is myositis? Is it Hashimoto's Encephalopathy? Is it the autoimmune colitis? Is it the ?lupus dx that keeps coming and going in my life? Is it Perherial Neuropathy, or the Small fiber neuropathy, my spinal stenosis, degenerative disk disease? Or is it all of the above? Or is it all of the above. I have crap going on in my personal life and my physical life. Oh yeah did I mention the depression I am in? Lets see, my head feels like it is in a vice, like the back of my head is numb, my brain is mush, I can not talk right, I know what I want to say but can not say it. Can not get the words out of my mouth it is so dang frustrating, I find myself I do not want to talk to people because of it, and that is not me. I am exhausted, I have the colitis thing going on, my legs have been so bad that even vicadan does nothing, My throat is closing up on me again, hard to swallow. I feel dizzy. My back, and upper legs are so bad, if I do anything I am in such pain. My arms are so bad I can not lift them up, and they were twitching on the inside of the arms hard to explain have had this before, and scares me, feel like a seizure type of feeling, with out going out of it. I feel like I can not even wash my hair, too much to lift my arms up. My hands are swollen and red and white blotchy. My knees hurt like hell, my joints in my toes, my neck, shoulders. I am tipping more then normal, balance is off, seeing things that are not there out of my perherial vision. (This is diff Hashimoto's Encephalopathy). I am sorry to be such a bore and a complainer, but you can see I do not ever know what is going on. Which symptom goes witch disease. I just know I have something going on and I can bet my bippy that is to be blamed on the stress right now. Not that you can not get a fare from nothing but the doctors all agree on one thing, stay away from stress, get it out of your life. Well if you know what the things I had to get rid of you would know it is not that easy. I try to be an up beat person and I am most of the time, but when there is so much going on physically it is hard to be not a little upset. But yes my cup is half full and it always will be. Thank you God for that. love you all family or strangers, susie

Tuesday, July 30, 2013

IT's Back,

I can not believe it but my autoimmune colitis is back and I hate it. It started a couple of weeks ago before my failed trip to Kentucky. Vomiting and the back yard trots so severe I will not even describe it. Had to not eat on the trip during the day, there and back. For fear. So it was better for a bit a few days, and now the last two days again, bang, can not leave the house because I never know when or how. I am going to have to start my AScol again for which I just hate to do. 400.00 per month for that presc. Isen't that sick? If you are not sick you will be when you pay for that presc. I had gotten better after my treatment for Hashimoto's Encephalopathy when I had five days worth of IV infusions of menythl prednisone. That helped control the colitis also even though it was for the HE. Last time it was so bad, I could not leave the house even for five mins. without big problems. So I hope to nip it in the bud so to speak. I do not want it to get that bad again. I think if it does I will request from the doctors that I would like to try the plasma exchange if the insurance will pay for it, as it will help with remission for the HE also and the scleroderma symptoms I am having. You would think I would be skinny, but noooooooooo, not so, you get so hungry when you get rid of everything you eat, that you eat the wrong things to help with the hunger. It is too bad that potatoe chips and cakes do not cause me a problem, it has to be, vegs, salad and dairy, and popcorn, etc gee. Well enough for now, it is an icky subject anyway, lol who wants to talk about poop, of course as we get older the subject does come up more. lol.

Saturday, July 27, 2013

Stress, Stress, Stress, Stress, Stress, Stress, Stress,

Yes stress, I can not even start to tell you the stress I am in. I will not bore anyone who happens to read my blog. But all I am saying, is it is bad. My legs and back were doing better, I mean were. Bring on the stress and then bring on the Hashimoto's Encephalopathy symptoms, bring on the foot dragging, the brain fog, the back pain, legs pain and weakness. My scleroderma symptoms, hands swollen and blotchy, with white spots shiny on them. Lets see the myositis is affecting me, who knows what is what. Maybe it is good that I have the emotional part of HE where we are numb, maybe that helps with this stress, I do not know, but guess what I still feel it. Yeah for me.

Monday, July 15, 2013

Small Fiber Neuropathy and Heat

Well not sure but I believe the heat we are having is making my neuropathy worst. My feet burn like hell, tingle, legs ache, my hands have been going completely numb, I am thinking it is the heat. Shoes feel tight even though they are not, can not stand anything on my waist or anything tight on my arms, or body anywhere. I am getting the all over bug crawling when I sit, oh how I hate that, I have to get up and move around, a little like restless leg but only all over my whole body. I am done with PT now, suppose to be doing the exercises at home, hard with the puppy crawling all over me, lol, I have to put him in his crate so I can do them right. I have decided that my life is too short and with all the medical issues have, I want to start going places seeing things. So I am going to Kentucky with a friend this week. Never been there, I am looking forward to it. I just need a break. I know I will pay big time for doing this, but I do not care. I will try to pace it. I believe that my legs and back will more than likely cause the most distress but we will see what happens. we were talking in one of my HE groups that what I hate the most about having Hashimoto's Encephalopathy is the flat feeling it has left me feeling. I do not feel emotions like others do. I know what to say, with situations as they happen, but do not feel it in my soul, or heart. It is like being numb to things. Hard to explain, but HE has taken this away from me, and I do not like it I morn the loss of the lack of feelings. As we talked about it on the web site, almost all the others said the same thing. How sad.

Monday, July 1, 2013

If I had a $1.00 For Every Time I Heard From A Doctor "But Your A Special Case"

Really I am a special case? What? Is this just used for Doctors when they know what they are doing is not working? Yes I am special as we all are in our own way. I realize with all the autoimmune diseases and now the spine issues, I am complicated that is another word they like to use a lot. lol. But if they are trying for me that is all I care about. Yes there will be many trial and errors. There will be mistakes, There will be things that work, but I am appreciative of the team of doctors I have even if I am a special case, lol. Well the physical Therapy is still not really doing the job. I only wish it was. I pray it was. It makes me so upset when I can not do anything with out my back and legs, and hips, butt aching. They will be giving me exercises to do at home this week, I will do them as I keep on swimming. One could get depressed. Thank goodness for drugs, lol, but really, not suppose to be outside because of the sun, and I love to garden and do flowers, then I can not go shopping because of the spine issues, and the HE causes me mental issues after just one afternoon of having lunch with friends, my legs ache all over from thighs to ankles, my knees hurt, my arms hurt, my feet hurt, buzz, burn, my arms and hands go numb. But I am not depressed. I love life. We could have not made it out of our burning house a year ago. So if I have pain, can not do much oh well, God has other plans for me. Maybe to babysit my new little grand daughter who is my life. She is what life is all about. I just have to remember her.