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

Small Fiber Biopsies Waiting for Results

So the waiting begins. I had a small fiber neuropathy done in two places in my left leg yesterday. I have perhieral neuropathy, and my doctor has said I have small fiber neuropathy also, but the rheumy thinks it needs to be confirmed by the biopsies to see if that is what is causing my walking and tipping and I think he is right. At least I will know for sure if it is from that or not. If not then I have to look somewhere else. Although the large fiber neuropathy can cause the walking problems also, the rheumy said with the small fiber it will come and go, such as the pain and stiffness in my legs. So we will see. The last few days it has not been to bad, but then again I have not really gone anywhere, or done too much. So how can one tell. Tomorrow it maybe back in full force again, and I will be thinking I need to buy a cane. I do know that I will have to get one soon. As the balance issues is bad. My word finding is bad right now too, calling things the wrong names, which sometimes can be funny but it gets embarrassing if anyone else is around. This is caused from my friend HE. Nothing is boring here in autoimmune land. The doctors are talking IVIG treatment if the tests show sfn. I know there has been some good results, so that makes me anxious, but the side affects scare me. Severe headaches, nausea not to mention how much each IV infusion of the IVIG is and if the insurance will cover it. Lots of ifs. But I want to walk, I want to be able to take a mile or two walk, go shopping, have fun with my kids and grand baby. So we will see what the next two weeks may bring.

I can not walk, tipping like a drunk no answers

Such a title, right? Well, my walking has been so bad again, pain, weakness, stiffness. I had an appointment with my neuro who I really respect and like as a person. She agreed with my PT that all my trouble is not coming from my back issues. There is a lot more to it. Then lately, my legs get stiff, like I can not bend them, this she thinks could be the scleroderma. They itch bad too. She said to ask my rheumy end of the month when I go about it. I have had other things that have come up such as the loss of pigmentation on my hands that I would attribute to scleroderma also. So we will see. But yesterday I was so bad when I went to the appointment that I could barely walk, when she walked with me to leave, I stopped to answer a question and tipped over into the left wall. (Like I do) So for once I showed the symptoms as they are for a doctor usually I get into the doctors office and everything is better, just like a kid. lol Well she wants me to record my blood pressure three times a week, for two weeks, once laying down, then once walking for three mins. and fax it to her. She thinks my blood pressure could be dropping. (Neuropathy causes this also) but I really do not believe this is it. If anything my blood pressure spikes, not drops. But we will see what happens. She feels this could be the arm problem also. Again I do not believe so. But when the two weeks are up, I want more tests I want to know what is going on, if I know I can handle it. She wanted to give me stronger pain meds and I said no, I am alright with that. I can handle it right now. So I walked out without bringing up the plasma exchange treatment I was going to talk to her about, but I will mention that also when I fax the info to her. IT is so weird that today now I feel better, not great, but better than yesterday, one just never knows. As normal I am tired but that is an everyday thing for me. Well enough for now, till we meet again.

Hashimoto's Encepathlopathy Problems and Depressed

It is an effort to even write this post. My body, by mind, my attitude is all bad. I had such a day yesterday, it is so scary to know your brain is not there, you are not functioning the way you should. Sometimes it is depressing. One can pretend everything is ok, my cup is half full, but today is leaking fast. I have been under extreme stress for over two years, yet always keeps a smile on my face, a laugh in my voice. But I feel I can not take it one more min. I had to go to a pulmonologist in a city sixty miles away yesterday and of course could not drive myself so had a friend take me, promised to drop off some props for my son's movie he is making, (no big deal) promised to pick up material for my contractor husband (no big deal) Promised to pick up a check for my husband as he told me he needed it in his checking account or he would be over drawn (again no big deal). Promised my friend that was so nice to drive me that we would have time to go to Michaels a local craft store while down their (really no big deal considering I love the store myself). So got down to the city with the doctor with 30 mins to spare, when to a local store to spend that thirty mins, and thought someone had stolen my purse, with cash, checking book, debit card, stuff for the doctor etc. I reported it, but had to leave for the doctors appt. I felt sick, felt like the straw that broke the camels back, (We lost our home to a house fire) a year and half ago and are still fighting with insurance companies. So the friend as I went into my appt. called the store and they told her they found it, they think I changed carts somehow and left the purse in the other. Now talk about embarrassing, I had already called our bank and canceled all accounts, so although I was so relieved to have them find the purse, I was still amazed that I could do that. So then the doctor says oh you need a cat scan, an eeg, a sleep study because your throat is so narrow. Well all righty then, lets just do it. So we leave the clinic, and go to drop off the props, which we had a hard time finding, but like I said no big deal, (did I tell you it was 93 degrees and high, high humidity so my neuropathy was acting, up I felt like I was getting sick, dizzy, just not well. So then we leave go back to the store pick up the handbag, leave go to the construction site and pick up the supplies, leave there grab a burger from McDonalds, and go to the store I promised my friend, Now I am feeling like my brain is on over load, can not concentrate, can not focus, legs feel like they may collapse. No place to sit, I think to myself, they may have to call an ambulance I felt so weird, no strength in arms, legs, but soon it eased up a bit, but ended up sitting in the truck, until my friend was done. Went to go pick up the check now my husband needed, which is at a sons house, and I am informed he needed the check by 6 and it is already 5:30pm and we have an hour drive. Well it never dawned on me at all that he may need that check in the bank that day. Why didn't it dawn of me? The old me would not have to be told, where am I? Where did the old Susie go? The one with an A personality, and reliable, fast, organized. Where am I, who is this weak person sitting in a chair all day today. Sick, brain fog bad, legs and arms weak and weird feeling. Where am I? Everything is such an effort. I look at the broom and to think of sweeping is too much for me. The fatigue is overwhelming. I am sick of this. I did not do hardly anything yesterday yet I could not handle it. More brain wise then physical. I need some answers. I could not even remember when my disability check came, I kept thinking it should be here and had to call my sister in law and ask her when? What the hell? I know with Hashimoto's Encephalopathy it affects the left frontal lobe for which mine does also. where this is the side of the brain that alters our judgements. So is this part of yesterdays problem? I just do not know. It is so frightening to me because when you read about HE they call it a type of reversible dementia, but it is right there in my brain that my mom died last year of dementia and suffered so much with that awful disease. Bottom line is I am scared. And after yesterday it has more founding.

Better Week

Ok no whining this week. Better. I hurt but it is bearable. I can do stuff and rest, last week I could not do anything, resting did not help it was a very, very bad week. Thank you God for this good weak. I am thankful for any thing I get, really. My head still has pains in it, and my joints and muscles still hurt, walking into things, cant talk, but it is better, although last night I had that out of body experience again where I am afraid to drive, my arms and head feels so funny, out of it, like they are not there, Seizures? nobody can tell me, Neurologist said it could be the perherial neuropathy, but I do not know. Just do not like it because it scares the pants off of me. I know my neuropathy is getting worst it is spreading and bothering me more. But I can handle it. Maybe winter will be better for me. The book on Hashimoto's Encephalopathy is coming along. We are editing stories and keep getting people who want to write about their experience being diagnosed and living with this rare disease. That makes me so happy. The more stories the more it will help others. We are behind schedule as we hoped to have the book out last winter, but being sick with these autoimmune diseases, and my partner also who Has HE. We have been delayed because of the disease we are writing about. But it is happening, we just keep plugging away and waiting for the neurologists stories who agreed to help us out. I was asked to go shopping over night with some friends and I think I will do it. I will try. If I have to sit down every ten mins, so be it, they can go on with out me and I will do my own thing,. I am so anxious to do something fun. I had a visit from an Aunt I see once a week this week the first thing out of her mouth was about my weight. Telling me I had to get some weight off, well my response was, the medication I am on makes me gain weight, and then she said, quit the meds, I could not believe this, I said I can not, she said, why not, and I said because I might die, and she shrugged her shoulders and then said what about walking? I was so upset, does she think I like the weight gain from the preds, the Lexapro, the carbamazepine, etc. I can not walk for more then five mins, can not exercise, I do swim when I can, but like last week I was so sick I sat in a chair for almost the whole week. I believe she would rather see me skinny and dead, then fat and living. I use to be a thin person, and worked very very hard at it too. I do not like what I see in the mirror or the size I buy, but what can I do. I just know I will never let this judgmental aunt in my home again to insult me, as I have enough stress without her making me feel guilty about one more thing. Anyone who has always had their health, and have always had money do not understand how we feel that are chronically ill. It is not a game, it is a war for us. Day in and Day out. Well enough for now, have a great rest of the weekend, and I hope you have no relatives like mine come and visit.

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