Why Did I Fall

Well good question, why did I fall down the back outside stairs? Leg give out, foot turn without me knowing it, me being nosey at the neighbors and not paying attention? Well that is the reason I am giving everyone. Fell on my right knee so hard, it is black and blue all around it. At first it hurt where the sidewalk burn was, (felt like a kid again) not! But now over a week later, maybe going on two weeks, it hurts worst. I wonder if I did something like tear the ligaments. Just what I need on knees who joints are affected from lets see, UCTD, I think that is the one. Lol oh well might as well laugh right? I do worry though why I fell, if I am going to be true to myself. I hope it was not my leg giving out or foot. Being nosey is better. Days are up and down. I have to start the Vesacare again, I stopped because of itching, but I was also out of allergy pills, so now that the itching stopped time to start again and just see. My heart is hurting today as I read a story for our Hashimoto's Encephlopathy book from a mom who lost her little girl to this awful disease forwhich is so unknown and underdiagnoised. It makes my problems small, non exsisting. I can not even write about it. The cookbook is done, just waiting to put all the personal pages together and off to publishers. So excited I hope we raise money for research for this disease that took that little girls life.

Bladder Issues Yippie

Well, another specialist added to the list. Yippie, is right. Nice doctor, very smart, but what the heck. I know have a what I call a pee pee doctor. I had to give in and go after suffereing for a few years. It seems with all my issues, the small fiber neuropathy, the Hashimoto's Encephalothy, UCTD, myositis, that they all can cause Bladder issues. Well of course it does for me. I would not want to miss out on a side affect of any of my disease. With out sounding gross, I have a bladder that always feels full, always have pressure and have to go. Even just a little, but where others would not even notice that they have to go,my bladder causes me to be uncomfortable. So I run constantly. Also have incomplete emptying. This is where you are done, get up and go to pull up undies and you start to drip, told ya gross, but this is a fact of life for me. So my new Doctor, did some tests for which I will never do again, Yuck. Maybe it is just me, but I am sorry never again. One was a cafiter that is equiped with a camera and is inserted into the bladder and moved around to check out all the bladder walls and check for cancer or anything else, then the other test they insert two cafiters into the bladder in different areas hook you up to electodes that measures your muscle contractions, then with an IV with water they fill your bladder up to compacity to see how much you can hold. I have to tell you my bladder was so sore all night after that I could hardly stand it. I know they do it for a reason to make sure there is nothing bad going on, so I passed that, yeah. But the pressure was very bad. Now trying Vesacare, Can I tell you holy cow price is so high, 199.00 for one months worth of meds. The doctor is very nice and did give me names of other drugs to check to ssee if my insurance will pay for instead of this one. I have had some good days since taking it and some bad. He also said not to eat fruit like oranges, cranb juice, or acid juices and worst of all, not to drink caffined pop. That is my only last vise. Now gone, That is depressing. I have to go back in a month, he said surgery is last resort, and that was good news too. So that is enough of that, yuck. Have had some really bad days, with pain, vicadin does not even touch the pain, forwhich is everywhere in my body. I can not touch upper arms, or upper legs, so much pain to touch. I am still swimming and enjoying it, but not going as much as I want because of the pain issues. I could not tell you whether it is from the UCTD or myositis, Small fiber neuropathy, what I just do not know, had tests done, but nobody knows why the pain,they thought it was from the cholesteral meds I was on, but been off for over a month and not better. It maybe my back too so I will have to go back to the pain specialist. Our book for Hashimoto's Encephalopathy is coming good, going to a publisher in June, so excited around 50 stories of only around 200 of us who are dx. What a great feeling. Also doing a fundraiser for the cost of publishing we have a cookbook to come out soon with recipes from all over the world. All of us HE people, so nice to all come together and do something positive. We also have a website now for the Hashimotos Encephalopahy. Please go to www.hesaonline.org to fing a lot of information on this rare disease and links to even more information. Well for now, I have to go and play with my new puppy. He makes me move even when I think I can not. I can move fast when I see him sniffing around for a place to go potty lol.

Stess

Stress, stress, stress, what can anyone say about stress.Yes it is a killer among other things. Bad week last week, very bad. So what does the stress do to me, lets see, the Hashimoto's Encephalopathy starts to act up. Yes it does not let me forget I really am disabled after all. I like to tell myself this is all a big mistake. Nothing wrong with me and maybe this is good. Maybe this is how I get through the whole dam thing. But when stress hits, so does the autoimmune diseases. Right away the right foot started to drag, may not be noticable to anyone else but me, but I feel it and the left one I feel hard to pick up. But not as bad as the right one. Then my talking, speech, I sound like Elmer Fudd. So hard to talk to say a word. I fight for every word I say, to let my brain figure out how to say it before it comes out of my mouth. It makes me tired that alone, to fight with something that comes so natural to most. I am fatiqued. Dam tired. Can not type right, spell right, which is not a strong point of mine anyway, or figure out things. My concentration is so off. Hard to watch a tv show. It is a blur of sorts. So stress,stress go away please for a litle while at least. I believe it is the cause of my small fiber neuropathy getting worst also. My upper arms are so bad, to touch I could scream and I have a very high threshold for pain. But dam they hurt. At night I sit and my arms ache and my legs ache like a toothache and pain killers do not do it for me. Now my lower back is acting up too. Probley my own fault, had to work off stress like I use to went outside and started to chop ice, wrong! Never do that when you have a back problem. So now add the back on to the rest and I am one hell of a mess. Feeling sorry for myself I guess. Just wish there was something to happen that was postive. All the tests the neurolgist did last month for the haulcinations, twitching, the wierd episode of numbness in my upper body, nothing showed up, afraid of Ms being added to the mix, but normal white matter so that was ok, stopped my pravastatin, forwhich I could have predicted myself to see if that helps with the muscle weakness in my legs and arms. We will see. Have to go back to the neuro in May, and suppose to have blood work every month for levels. White blood cells levels always low. So Weds I go to the rheumy, have not seen him since last fall. I want him to check vit d again since that is a constant problem for me. Then there is a new doctor on the horizen next month, suppose to go this week but do not think I can handle that right now. Will talk more about that later. Well enough wining and to all Happy Easter. Susie

More tests, More doctors

I still do not know what is causing my legs and arms to be so much worst. All the tests results came back normal except for my ANA of course is still positive and speckled but that was to be expected. Still though did not get my MRI results back yet but will call Fri to find out if the doctor has them or not. Went to my primary today, at her request, her nurse called me and said the doctor wants you to come in. (I love that) so in I go, checked all the blood pressure stuff, took me off the statin drugs I have been on at the request of my neuro who called her and they both discussed my leg and arm weakness and pain and felt it was the right thing to do right now. Stop the statins forwhich can have a side affect of muscle wasting. So we shall see what happens after I am off for a while. I then have a referal to a urinalogist (boy I know i killed that one) But been having problems with that end too, can not go sometimes yet others there is no control. So onward I go again. My detuctable for the year is now met of 3000.00 last year though it was met by Feb so I am doing good. I will list the tests tommrow with the results that came back

Stronger Meds

I did some research today on pain meds. as mine as of yesterday I know do not take care of my pain when it is that level as it was yesterday. It was so bad, I cried and let me tell you I think I have only done that maybe twice, I have a very strong pain level, can handle a lot. But when every single thing in or on your body aches worst then a tooth ache you know it is bad The vicadin did not even touch the pain at all. So the reason for my research. I think I will have to ask but I hate too, but see if they can give me something that I can take on occasion when it gets that bad. Not every day as I hate to take pain meds anyway and never take all that I am suppose to take. But yesterday I would have taken anything. Thank God it is better today. I woke up with just the normal amount of pain, for which I can handle. I have learned not to push it. So this week is going to be a Susie is lazy week, lol. I just know it has to be this way.

Small artical on Neuropathy, interesting

. Neuropathy Association Anyone whose hand or foot has “fallen asleep” has an idea of the numbness and tingling often experienced by people with peripheral nerve damage. Neuropathy can also present with a range of other symptoms (unrelenting pain, stinging, burning, itching, sensitivity to touch...). While much research has focused on the breakdown of cellular energy factories in nerve cells as a contributing factor to neuropathy, researchers at Washington University School of Medicine in St. Louis recently published in the journal "Neuron" on a more central role in damage to energy factories in other cells: Schwann cells, which grow alongside neurons and enable nerve signals to travel from the spinal cord to the tips of the fingers and toes. This finding may lead to new therapeutic strategies for people battling neuropathy...: http://bit.ly/ZgDYFN New clues to causes of peripheral nerve damage | Newsroom | Washington University in St. Lo news.wustl.edu New research suggests that damage to cellular energy factories in Schwann cells, which support neurons, may play a

Blood tests and more Blood tests, MRIs, Emgs etc

Today is a bad day, I hurt like heck. My legs have not hurt this bad for a long time. No matter what I do I can not get them not to ache. My buttocks also, along with my arms. Took my other vicadin and that has not even touched it. More blood tests today, Ammonia, another ANA forwhich I think is weird, Creatine blood test, Vit B12. Then on to the after hour clinic for my cough I have had for two months. I quess it is from my blood pressure meds, Dr. said it is a typical Ace inhibitior cough so had that one changed. Thursday a MRI of my head I believe for the jerking I am exspeirencing. Also maybe the haulicinations I had a few months ago. When I got into see my neuro, she did an emg right away and a nerve conduction test which seemed to come back ok, she feels it could be my small fiber neuropahty progressing faster then she thought, or and my connective tissue disease. I believe that is why I am having another ANA test done. But normaly once you have a positive one they do not do any more but I have had three done when I think about it and each one has gotten higher postive. So maybe she thinks it will show if my connective tissue disease is progressing. What ever it is, I know I am in a flare for what ever disease it maybe.