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.

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.

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.

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.

Whine, whine, whine

So been going to Physical Therapy for over a month, almost a month and a half, and no improvement. My doctor at PT said he thinks he has been pushing me to fast so he has slowed down the PT with me. It could be so, because I really have not had any improvement in my legs and back. So now what, my Neurologist said if I had no improvement with in a month to come back, but that is a joke, I cannot get back into her until Sept. I love her she is so nice and good, but I hate that when the doctor tells you to do something and then you can not do it because you can not get into see her. Good sign she is so busy but gee now what. I know it is not life threatening but one still gets anxious to know what is up when it is like this. I know with me, it is hard to say why, or what it is that causes the pain, I may have to start documenting symptoms again for the doctors like I use to, stopped for a while because I thought it did not matter anymore, wrong thing to do. So bit of advice to anyone with a chronic illness never stop documenting, you never know when you will need it.

Barametric Pressure and Pain

I was told a few years ago from my rheumy that I should be aware of the weather. At the time I wondered, what the heck does the weather have to do with me? Well there were a few times that I figured it out rather quick. Unbelievable pain, then a day or two later major snow storms, or thunderstorms. But I guess I forgot those words of wisdom, as Tues my pain in all my joints, muscles, nerve endings hurt so bad I did not know what to do with myself. I blamed it on the physical therapy I had the day before as the dr had increased the workout as I was doing pretty well. But by the time I got home, I could hardly walk, then the next day I was chair bound. I would get up and use the bathroom, do a dish or two, I crawled down the basement stairs and did a batch of wash, but then back onto the chair. I hurt so bad even my pain pills were not touching it. I hurt even sitting, throbbing like a toothache, everywhere. Then three days later a storm front comes in. I big one. Then I remembered what my rheumy had said, a few days before is when you feel it. Wow another point for Dr. Hermitano. Although I do think it was a combo of the PT and the storm front coming in, It was bad. I hate days like that. It makes me realize I am sick. Other wise I can go along my merry way trying to ignore my legs hurting, or my back, or my feet, or hands, or shoulders etc because it has become a part of me, pain is part of my life. It is ok, as long as I can keep going. I have to accomplish something each day or I am not happy. So push, push, push, but still limit the activity level so I do not use all those dam spoons up. lol. But Tuesday I was disgusted with my body, with my doctors, with everybody. I did not even want to do my crafts, or type. Is it depression on days like this, maybe, is it just the pain, maybe. But what ever it is, I do not like it.