HE, Myostis, SFN, UCTD?

Went out of the house today, Yeah. It was sunny, almost 40 snow melting, puddles, it was a lovely day. So took a ride to our local k mart cvs, pet store and our grocery store, gone for 1 1/2 hour and came home and could hardly walk. CVS I went through the drive through to pick up the prescriptions so only three places, pushed carts for stability but came home so tired, my legs could hardly walk. My back hurt, my arms feel weak. I hate this. Such a beautiful day, I am not going to let the pain get me down. I know I have said this before but I hate more than anything not knowing what is causing it. The myositis? The Small Fiber Neuropathy? The connective tissue disease? The hashimoto's encephalopathy? Which? My guess I think it is a combination of all of the above. But I have made up my mind, to get moving, regardless of the pain. I do what I can, I will work around the house, cleaning, washing, sitting, vacuum sit. Do dishes, sit. So I am moving, still swimming, trying to go more. I am going to start my little stationary bike I bought. It is a small one for legs only. But I want to be able to keep up with my little grand daughter, so I need to keep moving.

Well a birthday is coming up next Monday. Mine. I will be 60, 60 how can that be? I feel like a 20 year old in my head lol. My body no, but where does the time go. It is also the 2 year anniversary of our home burning to the ground. Just the last few months it has really been hitting me. I think I was in a sort of shock since then. Now I have time to greave and so I am. Although I know we are lucky to be alive and yes I celebrate that along with my birthday. But you know when you loose everything single thing you have ever owned in 40 years of marriage it is pretty sad. Then on top of that we are still working with our lawyer and the insurance company. We had replacement insurance yet here we are two years later in a rental with nothing settled.

Well time for bed, I told myself I was  not sitting up tonight. Need to get more rest. Night all.

Hashimoto's Encephalopathy (Autioimmuine Encephalopathy) SREAT (Steroid Responsive Encephalopathy Associated with Tyroiditis) HE(When will they decide on a name).

Hashtimoto's Encephalopathy (HE) is a rare autoimmune disease characterized by neurological and psychiatric symptoms, and is one of the listed "rare diseases" with the NIHs Genetic and Rare Diseases Information Center. He is an autoimmune disease in which a patient's antibodies mistakenly turn on and attack the patient's brain. The results of the attack may include severe cognitive impairment, speech disorders, seizures, memory loss, impaired balance, movement disorders, and sometimes psychosis. Patients sometimes may fall into a coma and in rare cases it can cause death. Unfortunately, HE is not well understood and patients often face an enormous struggle trying to find the correct diagnosis. But three women came together, and wrote a book the very first of it's kind. There has never been a book written on HE. If interested in this very informational book please ask your local book store or go to Amazon and ask for (Understanding Hashimoto's Encephalopathy) It will be available on Kindle with in a week. Hugs and kisses to all you suffering friends, and I hope this book sheds light on a very rare disease.

Understanding Hashimotos Encephalopathy

This is the title of the book I have been working on which is on sale as on Dec 31, 2013 on Amazon and next week it should be available on Kindle. I am so proud of all the work that we have all done on this book. There is so much information for anyone who has been dx with HE, or family members of patients with HE. There is wonderful information for the medical world as we have over 40 patient stories of how they were dx, misdiagnosed, treatments options and symptoms. Their stories as individual as the rare disease its self. As of a few weeks ago we have sold over 200 copies. So exciting. All money goes back into our non profit org that will reinvest the money into sending copies to teaching hospitals, 3 rd world countries and so on. I feel we really can make a difference. Being sick with chronic illnesses can make one feel pretty useless. Not only can you not work and add to the family income but you are not well enough to even keep your own house clean, or have the strength in your body to take a shower on some days. So to do something positive with the gifts God gave us is very powerful to me. It makes me feel like I can still contribute to society, make a difference. None of us are scholars writing this book. But we did it through all of our sicknesses, and set backs. So winter has been raw, heavy snow, and heavy legs for me. Hard walking, using a dang cane to steady myself. It does help with the body movements but now with my head movements. It hurts to use it. It hurts my pride. I just came back from a very close family friends funeral, and my legs have been very back along with my back. But I would not use that dam cane at the funeral, no instead, I stood up in the front talking to the family tipping over so that one family member had to catch me and straighten me up. So lets see what would have been more embarrassing? Me tipping over for no reason, or using a cane, gee lets see. Well that was a lesson learned tonight. I have to get back swimming, next week, two much time off. I feel it too. I need to keep; what I still have moving. Well I had to give into steroids over Christmas, I had to go on a steroid pack, to help me through. My brain, my word finding, was awful. I was dragging my right leg and foot. I had so much confusion and no concentration in anything and everything I did. Even recipes for which I never had problems in, are now a problem for me. I can read them over and over, yet take my eyes off the recipe for one min. and I forget something, this is a downer for me. I have always prided myself on my cooking and baking, not no more. My lap tops been down for over a month, been trying to use my kindle for which thank God I had it for e mail and faced book, but the auto corrects were driving me nuts along with who ever was trying to read my messages. lol. Well time to head to bed will be back soon. Good night