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

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.

Forgot to say

I forgot to add, that I will do what ever I have to to help my health as I want to romp with my new grandaughter who is the delight and love of her grandmas and grandpas life. We have had so many terriable things happen in the last few years, and I could go back ten years if I wanted too, but she makes it all right. Puts things in porportion. Makes you see why we are here on earth. Spread our love, whether it is a little brand new baby who happens to be the most beautiful baby in the world (I am not kidding) lol. or to offer love to a stranger who needs someone to talk to. It does not matter that is why we are here. God is good to us.

Back IS A Mess

Well there is something good about learning you are not just a big baby, and there is a reason your back hurts so bad. But really, when I saw the report,(for which I need a magnafying glass, as I had to copy it off the web under my test results, with a page missing) still waiting for the hospital to send me a copy of the actual report. But anyway, but when I read it, and googled all the results, I was a little amazed I have days that I can do anything at all. The report showed (condensed version): Multi level degeneration disk disease Prominent facet hypertrophy lower lumber spine No stenois in central spine, but there is some right greater then left foraminal narrowing at L4 L5 becuase of disk uncovering the right is considered moderate, left mild (stenosis) There is also grade 1 subluxtion at this level L4 L5 Basicly this is what I get out of the report I need the magnifying glass for, lol. So I will cont. the physical therapy for a month and see what improvment I see. Hopefullly there is improvement verses surgery which scares the hell out of me. Yet as I research it does say, if you wait to long for surgery, it may do too much damage and the surgery will not help. And I know I have had this for a long time only to get so bad, I can not hardly walk. So onward we go.

Spinal Stenosis

Ok now, yes I was diagnoised with spinal stenosis. I just wrote for the copy of the report to see why I have it, what is the cause. As you see as I researched the diagnois I realized that is can be a result of scleroderma also. I had a feeling about this, as I went to scleroderma site and researched it. As I have been diagnoised with scleroderma, then changed to UDCT with features of scleroderma along with the rest of the mess I am. There are other causes also of this spinal disease but I need to see the report to find out which it is. Very interested. So I am to try physcal therapy for one month, and see how it works, if it does not help me then surgery. That Is scarey. I have been swimming since Jan and that has not helped and that is suppose to be the best source of exercise for me. So we will see give it a month and cross my fingers. I do wonder then if this is caused by scleorderma if they will change my connective tissue disease again back to scleroderma, who knows. Of course the last few days I have felt better, ha, ha, just like a kid. My dr. Neuro did say the neuropathy is more than likely causeing my stenosis worst because of the way I walk, or stand, or sit, etc. with the neruopathy, my feet, legs, arms are in pain, so I do things differently which could cause pressure on the spine. Makes sense to me. Well happy Memorial Day everyone. It is sunny and beautiful here in Michigan. I hope it is by you too.

PAIN AND WEAKENSS IN LEGS GETTING WORST

I went to the Neruologist weds and she is thinking that the weakness and pain I am having in my legs could be due to the back problems that I have been having for a long time. I am going in for an MRI next week to see if I have stenois in my spine. All ready know that I have denerative disk disease and faucet disease in my spine, but now looking for this. She did say that if it is there surgery may be in order. I really do not need this on top of everything else. It scares me I admit it. But yet I can not help but think that if I could walk more and do more with out all of the pain,it would be so worth it. Now I can not walk for ten mins without extreme pain. I sometimes all of a sudden realize how much pain I have all of the time. How it gets worst when I try to do something, or more than just normal everyday things. I never combline. But I am getting tired of the pain. So if there is a way to help me with this, I had better get over the fear of the back surgery. I would like to keep up with my new grandbaby who is the most beautiful thing on earth to me. She makes everything right. All the problems that we have had in the past few years all seem like nothing when looking into that babys eyes. I love her so much. My new puppy is keeping me busy, running afer him, hoping I can catch him fast enough when he squats, lol. I keep wondering how long it is going to be before he is house trained. I have never trained a puppy, we have always had dogs but my kids have always trained them. I never had nothing to do with it except to yell at the kids to keep their puppys in control. lol. Well I am learning now. What I have is a little teddy bear breed. He is adorable, the ladies that come in all love him to pieces. He is a little lover, butttt he is sassy, taking his time learning the rules of this house. Lucky for us our 12 year old lab likes him as he plays with him often. It is a sight to see this big black lab rolling around with this 4 pound puppy. Well time to go, my puppy wants to go to bed now, (our bed) for which I have said for over 40 years I would never ever have a dog in our bed, welllll guess what? The litte sassy puppy is in our bed. lol.

I Am Sick OF Being Sick

I normally take my illness with a grain of salt, cup half full, but tonight I feel the cup is draining. I am sick of being sick. Yet I know I am so lucky to be here, and to have treatment and things could be a lot worst.But when I am invited to go some place and I can not go,hurts. The dam Hashimoto's Encephlopathy is acting up. Yes more then likely my own fault, because I over did things this week, not physcally but with my brain. Trying to write and help others with their stories for our book on the same subject, the HE, and trying to get people to write their stories for our book, getting the fund raiser cook book ready to publish, etc. It over loaded my brain. I could not get my brain to function right. I could not figure out which thing to do first, over loaded, too much information. I use to be a clothing buyer, figuring out six months out on buying woman and mens clothing, which is very complicated believe this or not, owned my own business, did my own business plan, managed two stores at one time, I now can not handle too much in front of me, my brain will just like close down on me. I hate it. So since yesterday when it over loaded, I have not felt well, dizzy, eyes are funny, my head feels like my hair is pulled back tight in a rubber band, pulling, I am walking into things, dropping things, my face is burning, red, hot, hands are swollen all day long and worst at night, (this I believe is the UCTD. Been in the sun for which I am photosensative, so who knows right? But I do know the brain stuff is from the H.E. The problem is I do not look sick, I look in perfect health. In fact (well fed) healthy person. lol. But a person that lives with chronic pain and brain issues, is never ever a person in perfect health. I guess I am just having a pitty party for myself tonight. Well poor me, tomrrow will be better.

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.

Seizure/Tremors/Episode?

Had a busy lovely weekend. My very first babyshower for a grandchild which is a girl. So excited. Then Sunday was my 59th birthday, did nothing sat in pjs all day, but it was also the one year anniversary of our home fire that took away every piece of anything we ever owned away. But I still have everything as my lovely oldest daughter remindes me and she is so wise and right.
But even resting yesterday for which I knew was a wise thing to do after friday and sat. I had a weird thing happen tonight after supper. Such the title of this post.

I was cleaning  up after dinner when I had an episode of unknown orgian. I have had a few other such or simiarl before but not for about a year. I went to reach to pick up something and all of a sudden my arms, chest, head, felt like tremors only on the inside, or like my arms weighed 100 pounds each,  or no control over them no visable tremors but on the inside. I got scared which is not like me I sat on the stool by me as it got worst, and thought I would have to call 911 I am always afraid it has something to do with my heart, but as I sat there it started to subside. Now hours later my arms still hurt and feel heavy, along with my hands, my eyes feel funny. One way to describe how my arms and hands feel it to say it feels like I have just got done writing out cards for the past 8 hours and my muscles feel tight and heavy. I am on anti-siezure meds actually for the neuropathy, but I do feel my doctor also feels  it helps these so called (epsiodes). So one more thing to be added to the doctor must talk to list.
So what causes this? I was researching tonight, and yes can be perherial neuropathy, seizures, from the H.E. from the myositis the UCTD? who knows but I know I have to get some answers.

Leg Issues

Well today I wanted to test the walking pain I had at the pulmonolgist at home, I wanted to walk for six mins and see if it happen again or was it a freak incident for me. So put my tennis on and started to walk around my home without stopping, by four mins my thighs ached and felt like I might not make it, not quite as bad as it was at the doctors office, but it was there. I did make the six mins, and think I could have gone longer with pain and weakness next time I will do it and see when I have to stop. I think it was a little better today because of the shoe thing, I wore a good pair of shoes to the doctor that day but not tennis, they had a heal of some sort so I think that could have made the difference of a few mins. But there is diffently something going on, a progression of sorts of my muscle disease. Which scares the hell out of me. With a progessive muscle disease you never know when to push it or not too. You do not want to permantly lose more muscle by pushing it too much, but then you have to exercise and keep moving to keep what you do have. It is a real balancing act.

As I said in my last post, I more than likely did not notice it because I have not done anything, just around the house were I stop and start, sit, do something, sit. So how would I know. Well I did call my neuro and I am going in next week for a complete blood work up. I know they are looking for Cpk levels but they do not always show on me, when things are bad so we will see.

I Feel Like I Am Getting A Flare

I am afraid I am having a flare for the past few days my legs have been so bad, week burn, but today I had an appointment with my pulmonolgist who did pulmonary function tests, for which one included me taking a walk with a nurse around the clinic with and oxygen meter on my finger for six mins. Well my oxygen was find, thank goodness but my legs were so weak and burning after four mins I did not think I would be able to finish the walk, for two more mins. It was almost scary. I know when I shop sometimes the only way I can do it is with a cart to lean on, I can not walk through malls, but this was the worst I can ever remember. My arms are feeling very weak also. I will give it a few days to see if things lighten up a bit, or get worst. If they do not get better I will call the neurologist or the rhuematolgist, not sure who. It maybe from them lowering my imuran before Christmas, I really hope it is not from swimming for which I have really enjoyed doing for exercise and so far it has not bothered me, so I hope not I need to exercise also.

The good news today though was I was stable, nothing has gotten worst, and I do not need a cat scan (I normally do every six months) so this is great and do not have to go back for six months. It is good to get some good news and this is great.

Well that is it for tonight, see you all later/

Doctors Call

Well got a call from the pain mangement clinic to see how I was doing with my steriod shots in my spine and tailbone. I had to tell her it was a disapointment this time, with no difference felt. I do not believe she wanted to believe this as she kept on asking me if there was any difference. But there is not so what can one say but the truth.

They always ask what the pain scale is right now, I do not like this either, when you live with chronic pain it is hard to put a number on it. I believe if I had to think about this that my back is constant 2or a 3, but then if I do to much or move the wrong way it is 5 or 6 and can go even higher depending.
So how does one answer this question when asked. Same as my leg muscles, arms, feet, fingers, what do I say when I have to put a number to them. They hurt all the time, never does not. So lets see today my knees are a 3 (only when I use them) My fingers and hands are around a 2 but will get worst when I am done typing. My thighs ache I think they are like a 4 but if I do not sit down they will become an 8. I think one gets my drift. I realize they have this pain scale for a reason. It helps them better understand how one hurts. But when you are dealing with someone with chronic pain I think it should be different. My 2 is more than likely someone who does not have pain everyday all day long is a 5 or 6.

Well enough complaining. The Hashimoto's Encephalpathy is making me afraid I am having some old symptoms again. I feel like I can not comprehend what others are saying, brain is not processing the information right. Even with TV I sit right on top of the dang thing, turn it up and can hear but it is not all making sense to me. I hate this. I had this a lot before I was dx the first time. People would talk to me and it would be bla, bla,bla to me. So this is scarey. I do have hearing aids so I do have a problem with my hearing, but that is not it, it is a comprehension, with my brain or a focus issue. Not sure. I will have to watch my next appt is not until April, so will have to see what the next few weeks bring. I do not want more IV infusions, I think I will reguest the plasma exchange for which I have read about. It seems to have put a few  people into remissions.

Well good bye till next time.

Hashimoto's Encepalopathy

I just wanted to remind my fellow H.E. suffers that have come upound my blog, that I am putting together a book with another with patient stories of how we were diagnoised, symptoms, treatments and how we are doing now. We really would like your story. It is said there are only around two hundred known cases of H.E. world wide, we have approx fifty stories for our book so far. Caregivers are welcome and encouraged to write their stories along with love ones of the  H.E. Patient. So please give some thought to this we will be starting our publishing soon but would love to add your story.

Headaches

Headaches that never go away. never, they hang on all day every day. I use to think it was allergies, or sinus problems but now I know that most of them are from the Hashimoto's Encephalopathy. My brain will feel swollen, like there is too much pressure in my skull. Sometimes I have to just close my eyes and sit in a dark room lights from the tv or computer screen are too much. Or there maybe a sharp jolt of electricity type pain shooting in my skull, brief but alarming just the same. I asked in my facebook group of friends with the same disease for which there is forty of us in one place (total of patients dx with HE is supposedly around 200) in the world, so we represent a good percentage of patients in one spot the majority of them have the everyday headaches also. So I know I am not alone, but still sometimes it does get bad, and does affect what I can or can not do. It has become the norm to just always have one and just keep moving because if you sit down it feels worst because I am thinking of it. Or I will get a numbness in the back of my head, it feels like it fell asleep and will be like that for days, which is unnerving also.

Another thing I  have asked in  my H.E. group is the seizures. I wanted to know how many of us out of the forty have had them and if they were after other symptoms showed up or was that the first thing to happen. Were they the typical type or not typical. I find it interesting that many of us had non typical seizure's after we were having alot of symptoms a while before we were dx. A few had full blown seizures that helped with the dx of the disease. A few of us were in comas,. and hospitalized sometime during the H.E. diagnoses. Only one of us out of the forty have been in a remission without a flare for over six years. How wonderful for her. She had over thirty treatments of plasma exchange. She still has the residue H.E. problems that seem to hang on to all. Short term memory problems, fatigue, concentration problems, balance issues to name a few. Most of us do not work, can not work. With speech issues, memory, concentration, balance issues, fatigue, would you hire us?

Another thing I have taken interest in with our group is that we all seem to have had  type A personalty's. This I find is interesting too. Maybe only one or two say they were not. I know for myself this is the hardest part to accept. Not being able to be that A personality anymore. No more Susie homemaker that is for sure.

Well enough for now, the head is pounding.

This time it is so different.

The two shots I got this time are so different then last time. I know they are in different spots, and there were two of them verses one shot. But it hurts. It hurt when they put it in, even though I was on an IV for pain, it hurt all day the first day and all day the second day and it is the third day and it is still sore. There is pain down my legs, and sharp pain in my neck once in a while. The one shot went into my tail bone so that could be why it is sore, but last time I felt like a new person the day after the injections. Wow what a difference. They did say it could take two to three days before it stopped hurting, but yesterday I did some research on the web and came upon a great web site about these injections and how dangerous they can be. Also about weight gain they can cause, Yes even from the simple injections. It makes me so disgusted. It is like everything you take, or do to get better causes so many side effects or there are so many risks, you wonder if you should just not take anything and take your own risks. My Imuran can cause serious side effects such as cancer, my carbamizpine can cause a serious and rare blood disease, all the drugs can cause kidney and/or liver failure, so it makes one wonder. I know I need the thyroid meds and blood pressure meds, but maybe I should throw the rest down the sink?

I talk so big, as I sit here right now and my legs ache so bad, my thighs and butt are so weak, and sore, that I am thinking of taking the vicadin I hardly ever take my full amount I am allowed, I think I am so brave because I suffer through the pain instead of taking what is prescribed for me. So I know I talk in circles. One paragraph I want to throw them all away the next (give me drugs) lol. But really not funny.

Tried to go to a dollar store today to get prizes for a baby shower (my first granddaughter) yeah, but I had everything I could do to make it to the store and walk around it and back out to the car. I dragged myself. Pain and weakness, I am beginning to think either things are progressing faster then they thought they would, or there is yet another autoimmune problem. Lets hope to God not. I am a very up person, and feel lucky most of the time, but the dragging my body, and the feeling there is a five hundred pound weight dragging behind me is sometimes too much.

Major pain in the back and legs

I went in today for a steroid shot in my lower spine, and in the tail bone. I had this done first part of Dec and it lasted until Dec 25, and it was great to have no pain in my back, but I did over do for the rest of my problems, because I could. My legs would get so weak, because I would keep going. But the day of Christmas, I could feel it, start. I thought too much work, but when I asked today why it only lasted for three weeks they said this was normal. Lot of people do not get any relief so it was a good sign to get the relief I did. What they try to do, I understood by what they said was that they try a few shots and relocate them to cover the nerves that are affected to try to ease the pain. It will not take it away but they hope to make it a little better. The pain doctor did say to keep swimming after this week of rest after the shot, (they do not want you soaking in warm or hot water, or hot tubs) they want the steroid to sit where they put it, I have to ice it for a few days so it does. The hot water or heat will make the steroid treatment disperse to other areas. So hoping it does help again as the pain level in my lower back and legs have been unbearable for a week now. Just dragging myself to do anything. Now what to blame it on I do not know. My arms also hurt bad even to touch them. So it could be the small fiber neuropahty too. Could be the myosits also. Who knows right? Will be anxious to get back to swimming next week as it does make me feel like I am doing something.

My eyes and brain have felt funny too, blurry, kind of out of it, hope that goes away soon. That is from the Hashimoto's Encephalopathy hard to concentrate on things. Again one does not know when to call or go into a doctor. Just let it go and see where it goes is my thing lately. Because I am so sick of doctors and appointments. Really sometimes with all the research I have done I feel like I may know more about some of the rare autoimmune diseases then some of my doctors. I do not mean to be rude about this, but really I do. The problem is I do not know how to express myself or use the big words they use in the text I read. But it is up there in my brain, it is easier for me to write it then to speak it. In fact last night I was staying with a friend overnight in a hotel close to the clinic I was to get the treatment for today, and had to apologize for my speech. I had to close my eyes several times to think of the word I wanted to say. Again it is the Encephalitis/Encephalopathy. Good thing it was a good friend and she understands somewhat.

Well time to go and ice my back again, what a pain in the butt, (no bun intended) lol.

Medication List

I do  not know if this well help anyone or not, but in the slight chance that my list helps someone or some doctor try something new for someone who is ill, and it helps I will be happy. So here goes.

As of January 23, 2013

AmLODLpine 10mg once a day for blood pressure and for my Raynauds disease it is a Calcium channel blocker.

Aspirin 81 mg one a day

Fluticasone nasal spray for allergies

Furosemide (40)mg one a day

Levothyroxine 100mg one a day for Hashimoto's (Hypothryoid)

Estrace Cream is for dryness of vagina

XYZAL Levocetirizine 5 mg one a day for allergies

Azathioprine 50mg tabsl take 3 per day (IMURAN) this is the dangerous one the doctors were arguing about dosage or disc.

Aspirin 81 mg one a day

Lorazapan  0.5mg 1-2 3xaday for anxiety

Lexapro 20Mg once a day for depression

Carbamazipine 100 mg tabs 4 a day 2 morn 2 night, this is an anti seizures med that acts for my neuropathy too.

Hydrocodone APAP 5-325 TABLQ 3 times a day for pain, I try not to take three, I try to take just two, but there are just some days I have to.

Omeprazole DR. 20Mg Caps twice a day for Acid Reflux

Pravastatin sodium 10 MG tabs take one a day for cholesterol.

Vit D 1.25 MG 50,000 one every other week., This is adjusted regularly because of my vit d level fluctuates so much. One time it was down to 13 so low.

Klor-Con M 20 1 a day potassium

Lisnopril 5 MG 1 a day this was just added in Dec it is a blood pressure meds, often given to people with Scleroderma, it is an ace inhibitor

Drugs I have been on for these diseases but no longer take:

Hydroxyuchloroquine, this is an antimalarial drug that I was first placed on because it has the least of the side affects. This is when I was dx with Scleroderma.

Nuvigil this was for concentration problems, but could not take it because it made my heart race.

Pentoxifylline ER which is called Trental I was on this for the Raynaud's when it was so bad.

They also tried a nitroglycerin cream to put on my hands, but that did not work. (Raynauds).

Asacol EC 400 MG six a day, this was for the colitis problem when it was so bad, I also was told to take over the counter pepto bismal tabs six times a day along with this. It did help, did not take it away but when I had the steroid IV infusions thank goodness I got relief.

I know there are many more I can not remember, so many cortisone creams I could not even imagine to tell you all presc and then there was a anti itch pill I was on that helped with the itching when it was so bad but of course loss them all in our fire.

I hope this can help someone out.

Stress and Autoimmune diseases

Research has shown that stress can bring on autoimmune diseases, you are predisposed but it can bring it out if you are under a lot of stress I always thought this it seemed to make sense, but when I went to a scleroderma specialist in Chicago, she asked me if I had an elderly parent and I said yes and then she asked if I was a sole caregiver and I said yes, and she said, that studies have found that baby boomers (such as I am) they have found develop a lot of autoimmune diseases and problems because of the stress brought on by care giving a loved one. As our parents and elderly are living longer, so is the care giving living longer, then add in to the fact that the brain was not designed to live that long, it develops things such as my mom had dementia. I know for myself I was under such extreme stress at the time everything started to fall apart for me for my health.  I believe this is true at least for me.

But there is a problem, They tell you to limit stress, stay away from it, it can make your diseases worst, or put you into a flare.  But how do  you do this? Just living in this day and age is stress. Add on just one Chronic, illness and you have stress, now add several rare chronic diseases, and sure I will limit my stress. Then you have the financial burden you have with chronic illnesses. Unless you have the best insurance in the world, it is a burden. I had to quit my job, (I had worked for over 25 years) no retirement benefits, or insurance as my husband has paid over 1350.00 per month for insurance for us and until the last few years we never used it, but we are using it now. So add in loss of wages, and meeting your 3,000 per year deductible every year by Feb 1, it is a stressful situation for all. As far as disability or SSD that is also very stressful to try to apply for. So stress is in our life's we just have to learn to handle it the best way we can. I have never been a believer in drugs, never even took an aspirin, but things are different now. With the stress that the illnesses cause I have agreed with the docs to help me out with medication. I am not ashamed to admit. I would have been a few years ago, but not now. In the past year and a half, we have lost our home, that we loved, my mom three weeks later, that I loved with all my heart and soul. We are still fighting with insurance to get our house rebuilt, and my husband is losing his eyesight to Macular Degeneration. So yes give me drugs. lol.

Go Ask Your Mother, Go Ask Your Father Geeeee

So, to call or not to call, write a letter, or not write a letter, gee. My doctor came back today and read my letter, I got a phone call right away from her nurse telling me the doctor (neurologist), read my letter and wants to know who authorized the lowering of my Imuran, when, and why. Well I am thinking, to myself "hey I am not the doctor here" but I knew what she meant. My neurologist is like my quarterback in my health care and I am so grateful for this and to her, she will call my rheumatolgist and discuss my case and what to do. This is great, but when I went to my rheumy in Oct he wanted to take me off the Imuran because of all the bad side affects of the drug,( which I explained in an earlier post). He told me to talk to my neurologist at my appt in Nov. for which I did. She did not feel I should because of the Hashimoto's Encephalopathy that I have so she said she would call my rheumy and discuss it with him. She did they called me and said to stay on it. On ward to Dec, when I needed a renewal on the prescription. I got the presc from the rheumy and it was lowered to three a day instead of 4. Well I did think to myself it would have been nice to know they were lowering it, but just went ahead with it. Now because of my letter to the neuro she did not know it was lowered and was upset. The nurse asked if I would call the rheumy office and find out if it was a mistake or for real. (Go ask you mother, go ask your father). So I did and they did, and I did again call the neuros office and told them and they called me back again and said stay on the three. If I keep having symptoms to call. Oh by the way the doctor agreed I should not have taken the other prescription the doctor on call prescribed when she was gone. But I am thinking so what about the sweet potatoes. GEE.

So went my day. Sorry for spelling tonight, for some reason the spell check does not want to help me tonight. It must be talking to my two doctors and can not decide whether or not it should or should not help me out. GEE.

Hashimoto's Encepalopahty Fellow Suffers

Hello, late again, I have to start these earlier. LOL

I would like to inform any fellow H.E. patients, that I am putting together a book on H.E patient stories along with another. We hope to have at least 50 stories to include. We are hoping by doing this we can help someone who is newly diagnoised to have some where to go to see what others have gone through and how they are doing now. I know myself when I was first diagnoised, I did not have a clue what it was. When I researched it on the internet I could not find much at all. What I did find was articles that made it sound as if as soon as you had your steriods, you would be all better and able to work and resume a normal life again, but I found out the hard way that this is not always true, in fact it is not the norm. So having patient stories that others can read I think would really be helpful. We are incouraging family members and friends to also write their stories for the book, as they have a story to tell also.

If you would be interested to include your story just leave me a comment and I will tell you what to do from there. We would be so appreciative.

Myositis

Myositis is very rare disease which is considered chronic inflammation of muscle tissue which is accompanied by muscle weakness.

Myositis is considered to be a connective tissues disease also, for which is an autoimmune disorder that your white blood cells attack blood vessels, joints, bones, organs (connective tissue) and also attacks normal muscle.

The three main types of myositis are polymyositis, dermatomyositis, and inclusion body myositis, there are others also but these are the main ones.

Some of the myositis is considered to be idiopathic, which means no known cause but they are thought to be autoimmune disorders.

Slow and progressive muscle weakness starts in the proximal muscles which means the muscles closes to the body, the inflammation causes damage to the muscles that causes the weakness and can also cause problem,s with the arteries and blood vessels that are in the muscles that are affected.

Fatigue is a big part with myositis. Such as I described in an another post, the weakness and fatigue after walking or standing, tripping, falling. Sometimes this can affect your swallowing or breathing. Some get pain as I do also from the weakness and fatigue.

This can also cause problems with speaking, getting up from chairs, climbing stairs, lifting items, shortness of breath etc.

This disease can slowly progress this is what my doctors told me that I have the progressive type.

The treatment for this is the immune suppressants such as I take, preds. Exercise is good with good sense.

Diagnoses is very difficult for this disease. I myself had to have a muscle biopsy to have the final diagnoses. I also had an EMG and the doctor put it together with the symptoms.

What Is A Connective Tisssue Disease?

The term connective tissue disease really means that it is a various group of medical diseases. The collection of connective tissue is actually the target of these diseases. The connective tissue in our bodies is the structure in our bodies that holds it all together. It is like a framework, that holds everything together for which is made up of molecules of collagen and elastin. When you have a connective tissue disease the collagen or elastin can become inflamed. There is no research that shows any causes for one to get a connective tissues disease.

You can see with this frame work of connective tissue how autoimmune disease involvement can affect your whole body.

Mine has features of the scleroderma for which makes everything even more complicated.

A Little More Explanations On Ilnesses and Meds

I started to think the other day that I did not go into very much explanations on the medications I have been taken or have I gone into very much of an explanation on  the illnesses I will try to do better.

First I would like to explain my Imuran I am on for the UCTD with the features of the scleroderma, the Hashimoto's Encephalitis, the Myositis, and also the autoimmune colitis that I have.

Imuran is an immune suppressant. With autoimmune diseases your immune system is on over drive attacking your own body. With the immune suppressants such as I take which is the Imuran, it helps to suppress  my immune system but by doing so it also makes me more at risk illness. It lowers white blood cell count. Mine has been very low for over two years. Just having a lowered white blood cell count makes you more susceptible to catching colds, flues, all illnesses. I was told when I started on this drug that I should avoid crowds, I should stay out of weddings, receptions, closed buildings, anythings that closes the germs in. I was also told this drug is dangerous it can cause certain kinds of cancers. Certain kinds of blood disorders. This drug is classified under a cancer drug. I am well aware of the risks of this drug, but also well aware of the what ifs that could happen if I did not take it. When I start to get a cold or cough I am suppose to go into a doctor right away because of the risk.

Sending letter to Doctor

I have decided to send a letter to my Neuro for her to have when she comes home from her vacation and gets back to work. I feel it is easier for me to explain in writing then it is for me to try to relay what is going on through her nurses. There is just too much going on. Hope fully I will get a call back within a week of her return although I know she will be so busy catching up.

I left off explaining what treatment options you can have with Hashimoto's Encephalopathy. I myself right now need a treatment and I know it. Today I felt like crap, slept almost all day and I hate that. I feel like I am wasting a whole day of my life. But could hardly keep my eyes open plus my head hurts bad, sinus, who knows. My head will hurt all over and it does not have to be sinus, so it could be due to the H.E. but regardless of what it is, I could not even go swimming today which really bummed me out. I just started for exercise and love it. But it would not have been good today.

My diagnoses of H.E. came after a string of other autoimmune diseases. Right before the diagnoses of the H.E. I was dx with Myositis for which is another very rare autoimmune disease. There are several types that follow under the heading of myositis, but mine is said to be a autoimmune response with no label. I had an elevated CPK test plus an abnormal muscle biopsy. This disease causes muscle weakness of your body. Your legs are so weak as mine was I could not even step up over a curb. To climb stairs was almost imposable. To hold my arms up to wash my own hair was such a chore that I would skip it many days because I just could not hold up my arms long enough to finnish. To think that I just let this happen and did not realize there was something  very wrong. How one convinces one self that they are ok, or we just learn to live with limitations and go on day in and day out suffering with out even knowing it. I do not think it is suffering after a while, it is just living.

Myositis also causes extreme fatigue along with other symptoms. So now I had the H.E. and the myositis that causes fatigue and weakness both so it is so hard to tell which one is causing which.

During this time I was also dx with peripheral neuropathy and small fiber neuropathy, inflammatory myopathy. I will just describe the neuropathys in a general way and put both together. My neuropathy problems affect everything in my body. From my scalp to my feet, from sharp electrical type of shock pain to a numbing or burning sensation. It can cause itching, also no temperature control in your body, it can cause incomplete emptying of your bladder. It also can be blamed for diarrhea, drying of skin and hair. It also is to blame for balance issues, eye issues and twitching just to name a few. Lets say I have most of all the symptoms that they list under these neuropathys that come and go at different times. I take Carbamizapine which is an anti-seizure medicine to help control the symptoms. This was diagnosed by and EMG and Nerve conduction test, along with a nerve biopsy.
The myopathy was dx by EMG and a muscle biopsy and my cpk levels. Myopathys are inflammation of your muscles. Which also causes weakness and in my case is progressive I was told.

Well enough for tonight. More later.

Balance and speech issues

As my balance and speech issues got worst and my word finding and memory continued to worsen and to scare the hell out of me I kept thinking it also was stress related as my poor mom was suffering from Dementia and I was the sole caregiver and her disease was getting worst. I was getting calls at work from her constantly and from her social workers, and her doctors, and I would have to go pick her up in the middle of the night for she was scared and hallucinating. I felt so sorry for her, and so scared for her, but she would not move in with us, I would drop her off at her apartment in the morning and pick her up when she called at night scared. So you can easily see why I and the primary doctor kept saying stress.

But my symptoms were getting so weird. Some of the things I did or said were not me. I got depression, and anger issues, I flew off the handle easier then normal. I said weird things to the customers at work when I was still working. My head felt like it would explode at times, or numb in the base of my skull. My eyes would be blurry like your glasses are dirty, I would drive and look up at the street lights and get weird feeling, I would have to look away the lights bothered me so much it scared me. In fact the neurologist told me I could no longer drive any distance just very close to home which made it difficult. My hearing got worst. I would be afraid of falling in the shower when I closed my eyes. I had such weird symptoms.

Dr. Santilan wanted me to go to Mayo, but my insurance would not cover it, so as I did some research I found that the University of Chicago a teaching Hospital had an excellent scleroderma clinic and a great neurology area. So Dr. Santillan sent me on my way.

I was a little disappointed with my Chicago's visit, I felt they did not even exam me, just looked at my existing charts took more blood that confirmed my ANA but did show up an interesting result on the lab report.

My Thyroid was out of wack for which they upped my thyroid meds almost double. But more importantly my thyroid blood work showed up a very high Thyroid Peroxidase AutoAbs of over 1200 where normal is below 30. That is all that was needed to have Dr. Santillan dx me with what was causing all the rest of the problems and that was Hashimoto's Encephalitis. If you research this rare disease it will describe it as a relapsing encephalopathy occurring in association with Hashimoto's disease (not always true) with high titers of antithyroid antibodies. Clinically the condition presents with altered consciousness, confusion, focal or generalized seizures, myoclonus and episodes of stroke like deterioration. But there are so many other symptoms that can and do occur before you are diagnosed that is why the doctors have such a hard time to diagnose a patient.

There are several treatment options but the first one the doctors usually try with great success high pulse IV Steroid treatment with Solu-Medrol (methylprednisolone sodium succinate). This treatment generally is given between 3 to 7 days for which I had it for 5. There is a tapering dose that is sent home with the patient which commonly starts with 60mg per day and tapers slowly down over many months. Some are then started on Immune suppressants which some of which are  Imuran, Cellcept, Methotrexate and if these do not seem to do the trick the doctor may try IVIG which is an Intravenous Immunoglobulin treatment, and also there is Plasmapheresis also called Plasma exchange or Plasma Transfer this is where they take the patients blood and filter it through machine that separates the plasma from actual blood cells It maybe replaced by salilne, albumin, or donor plasma.  the reconstituted solution is then returned to the patent.

I am not taking the new Medicine!!!!!!!!

Well picked up the new med that was prescribed for me this morning, but decided not to take it until my normal Neurologist comes back from vacation. I do not believe this is the right thing for me to take. Yes I am not a doctor, or even have any medical training per say, but my gut tells me NO. The drug is called Risperidone .025 MG and is a anti psychotic drug. Well for just seeing sweet potatoes on my bathroom door, lol I do not feel warrants this type of drug. Here is one has to be pro active with their health care. This doctor that prescribed it, more than likely (probably 100%) certain has never treated a Hashimoto's Encephalitis patient before. Since it is so rare, and maybe about 200 cases in the world. So what are the chances. The side affects of this drug, is muscle weakness (I already have myosistis, myopathy) Can affect the brain neurons (I have this already too) believe me I do not need to loose more than I have. Can cause weight gain which according to this is almost certain (well obviously the doctor has never seen me) he would know I do not need that too. There is a list of others for which I can not afford to get as a side effect. I know all meds have them,. but I do not want to risk this one. I looked up treatments for H.E. and did not see any,mention of this drug as a treatment. So I will wait to take it until I talk to my friend Dr. Santillian.

Con from To call or not to call

January 12, 2013
Well I ended up calling my neurologists office today on the advice of one of you fellow HE patients who told me that my symptoms could be another form of a flare of Hashimoto's Encephalitis. Soooooo I decided to take her at her word and advice and called. My doctor is on vacation of course until the end of the month. I asked if there were any openings after that and they said not until March for which I already have an appointment then. So I would have just dropped it, thinking oh well can not be that bad, but the nurse said I should tell her what is going on and she would tell the doctor on duty, for Dr. Santillan, so she did and called me back with in an hour. The doctor prescribed for me an anti hallucinate for me. and I am to call them back next thurs. Well, I do not like this either, I do not have the hallucinations that often and only just started, so hate to take yet another pill. GEE can not remember the name but when my husband picks them up I will add it to this. Here I was complaining because I was afraid of another round of IV infusions out patients but I think this might be worst, can not wait to check out what side affects these cause.

Well to con. where I left off (by accident yesterday). My doctor had dx me with Scleroderma. which is a serious chronic connective tissue disease that can cause death but also can disfigure you. It hardens your skin, your body, your lungs, heart, kidneys, hands, feet, ect. Everything. So he started me on Hydroxychloroquine which is an anti malaria drug, and I started to feel better so with in a couple of months he changed my dx to UCTD with features of Scleroderma. Which I stayed on for about six months but my muscles felt worst, I was getting more fatigue and started to have swallowing issues for which I had two EGDs within six months two dilate my esophagus because I was choking on food. Because my muscle were getting worst my rheumy took me off the Hydroxycloroquine (side affects can be muscle problems) and he started me on Imuran at 150MG a day. But still I was having problems.

I decided to go back to my primary doctor, and tell her about the muscle and the nerve problems I was having in my legs and hands, I knew there was something going on and I just felt nobody was listening to me. (Stress was blamed on everything). The primary doctor checked my reflexes and then asked me if I wanted to start anti depression meds, or see a neurologist, I thought about this and said I want both. Best decision I have made in a long time. I did not want to start on lexapro because of the known weight gain, but I did and it helped me calm down, and the neurologist is the one doctor I say saved my life.

Her name is Dr. Santillan and she is a neurologist she was someone who listened to me, and laughed with me, she was honest with me and helped through an unknown period of my illness.

The first appointment with Dr. Santillan she examined me, read my records, as I told her how my memory was getting bad, my speech was getting bad, my balance was off. I would have episodes that seemed like out of body experiences and end up in the ER. Were of course they said it was stress. But she did not. I would be at work and try to say mirror and kept saying window, or try to talk and say a word and could not get it out of my mouth, it was like there was not enough spit, or my  tongue would not work well enough to form the words. ( I was in sales and my job was to talk to people) I was so embarrassed and frustrated. The fatigue was bad, I would walk into walls, could not go through a door way without knocking into the door frame no matter how large the door frame was, I would walk down steps and it looked like I was drunk. I would tip. I had no balance at all. Could not concentrate or sometimes could understand what others were saying, it sounded to me like bla,bla, bla. It was bad and getting worst. Dr. Santillan right away ordered a MRA, MRI, EEG, spinal tap, EMG, and a nerve conduction test, then came the biopsy's of my nerves and my muscle. She dx me first with inflammatory myopathy, which she said was progressive, also told me I had puerperal neuropathy, and small fiber neuropathy. This was the beginning. She started me on Carbamazepine, 4 a day of 100mg each and told me I needed to quit my job or it would be dangerous for me to work. She said with everything you have wrong with you, you would get disability right away. So July of 2011 I did quit my job and applied. I have to say when I walked out of her office I was in a state of shock. I had girlfriends waiting for me that I looked at them and said she told me I am very, very ill, and need to quit working. I could not even think. I knew I was sick but to be told you are very, very ill scares the hell out of you. Trust me on this. The carbamazepine did help with the neuropathy and the seizure type of out of body experience's I had, not gone but better. But I still was getting worst with my word find, and speech and balance issues.

To call or not to call

January 11. 2013

That is the question I am posing to myself. Been having some very weird Hashimoto's Encephalopathy issues lately. Such as the other day, while watching a cooking show where they were whipping up sweet potatoes and I needed to use the rest room as I pushed to door open to go in (it is white) I saw this large smear of sweet potatoes, as I sat in there thinking, where did that come, we have not had any, it must be something else, so when I got out of the bathroom, and looked at it again to wipe it off, it was gone, in fact there never had been anything on the door. My brain must have transposed the sweet potatoes I was watching on to the door. This sort of unnerved me that my brain was doing this. Along with the tipping issues (balance) I am not sure I should call the neurologists office or not. Hate to go in as I am afraid of another round of IV infusions of steroid's. So I will see what I will do.

When you have autoimmune diseases you never know which one is acting up. They all seem to overlap each other. Symptoms can be so much the same, in fact they can cause the same symptoms sometimes. So how does one know which is doing what. In fact how do the doctors know which one is doing what.

Well I said I would start with my autoimmune diseases and discuss what I have and what I have gone through hopefully to help someone else.

About seven or so years ago, I started having sore fingers, they ached, my thumbs ached the worst, I thought it was from moving racks around for over 20 years (as I was in retail clothing business) so we were always moving things around the stores, I am short so I used my thumbs to help carry the racks.
but soon I started to get tired, I mean dam tired. No matter what I did or did not do I was tired, and my thumbs still hurted. It got so bad that one day before Christmas I was sitting in my truck in front of our local Walmart and I looked at the store and thought I just can not go in I am to tired to walk from my truck to the store. Now this was not like me I am like the energizing bunny go, go, go. I could out work someone 1/3 of my age. I thought it must be stress related so pushed through and went in and forced myself around the store and went home. Decided then and there to see a doctor after the holidays for which I did.

The doctor found I had severe hypothyroidism along with the beginning of high blood pressure. She prescribed thyroid meds and I thought ok, now I am going to feel better right away.   Well not to be so, my fingers now hurted worst, I kept gaining weight some from the fact that I was so fatigued and other from the hypothyroidism. I just kept going though, because I am never sick. But it got so bad I could not use my fingers especially my thumbs to hold things, pull up my pants, put my bra on, had to buy a front hooker one because of this. Still thought stress and the hypothyroidism. Started a new job, felt even worst, my hands now looked as bad as they felt, swollen, red, blotchy looking, just ugly, and I was working in a jewelry store and had to use my hands all the time to show people rings and such and was so embarrassed of them. I had people comment on them daily. I tired every cream, every soaking concoction on the market to no avail. I tried to hide them when people were around, I could not use them to unlock our cases with the jewelry in at work because of the pain and swelling.
I would drop the jewelry because I could not hold onto anything tight. Right about now I started with another autoammune symptom.

I developed colitis, I could not go anywhere or do anything without the embarrassing symptoms of colitis. I would be working with customers and have to make an excuse to go to the back to use the bathroom, and with colitis you never know how long it will take and if you will have time to make it to the bathroom without an accident. I had a colonoscopy done to see what was the matter and was dx with a rare form of colitis called Lymphocytic which was also an autoimmune disease.

Around the same time I started to have sore joints, and muscles, it started to feel like I was carrying around a 500 pound weight with me. I dragged. I was tired. I was sore.  I would have like hot spots, first it would be my ankles, that hurt like heck, then it would be my elbows, etc. But the dragging feeling was the worst. Then it started I could not go up an incline, even one step such as a low curbing was too much for me. My arms could not stay up long enough to wash my hair. Still my doctor blamed it on stress. (As there was a lot of stress in my life at the time). At work I dragged myself through the day, barely. when I got home, I had a hard time to get out of my truck and to go up the steps I had to drag my body up the steps by pulling on the railing and going one by one.

I had from October at this time to March with hives from my ankles to my butt, then went up to my shoulders and bib type area on my chest. It itched so bad I thought I would dye. I again tryed everything, nothing worked. I went to a doctor who gave me steroids but they only helped temporally when they were done the itch and rash came back. I also had such skin sensitivity to tags, material, I had to change to all cotton, cut all tags out of my clothes and stop wearing nylons to work as I could not stand the feeling anymore. I had to stop wearing jewelry also. It stopped by its self in March of the following year.

Now I started to have a sensitivity to the sun, I could not be outside at all without getting red, and feverish feeling. My legs would swell, face, etc. Decided to go see a dermatologist for the hands and the sun thing, he did dx me with photosensitive. But thought I might have lupus, so started with every blood work you can imagine, as this went on for a few months, and my arm weakness and leg weakness got worst, I would also brake out with a red hot flush that would be inside both legs from ankles to knees and would last for a week or so and the same with my forearms, they would be hot to touch and fiery red. My ANA came back positive and speckled pattern so the Dermatologist thought for sure it was lupus in fact told me I had it but did not want to put it down because I would never get Insurance again with that on my record.

Well then started another autoimmune problem. Raynauds disease my hands turned blue, I mean a true blue color, it would happen when I was cold, or stressed. Then they would be white, red, but it was awful I was having a hell of a time with this, then my feet started and my nose. Once at work I looked into a mirror and my nose was blue, nice look for a fancy jewelry store. I started on a calcium channel blocker to help control my Raynauds disease. This did seem to help they also put me on pentoxifylline which is a drug they put you on for this disease. About this time I asked for a referral to a rhuematolgist.

Went to the new rhuematolgist who looked at all my blood work ups and my hands and gave me a dx of scleroderma another rare autoimmune disease.

January 7, 2013 12:03 AM

Yes it is A.M. This is me since our home burned down almost a year ago. I can not go to bed at night. Now whether or not it is from the fear of falling a sleep and a fire should break out, or what but since that early morning of Feb 24, 2012 fire I have a problem with it. It was my 58th birthday. But Bob and I got out alive, by about two mins, and I am forever grateful to the two men who happen to be going by our home at 3:00AM delivering early morning papers.That kept on knocking on our door to wake us up. God was watching out for us. But still to lose everything you ever owned in your entire life  is the most unbelievable thing you can imagine. No under ware no shoes, no coats, no pants no purse, wallet, comb etc. Not to mention everything else that we accumulated with a 38 year marriage and 4 children. Baby clothes, antiques, baby cradles, kids pictures. What more can I say. Enough of self pity.

I have been having tipping issues lately really driving me nuts. I stand at the stove, sink or what ever and I tip, either backwards, forwards, sometimes sideways, always trying to catch myself to straighten myself up so I do not fall. When I say tip I mean tip so far back on my heals that I am almost falling. Mostly backwards. If this keeps up I may have to call Dr. Santillan my neurologist. But I do not want more steroids. I really do not. I also have been finding myself not saying the right words again for things, really having to think about the word I want to use, to try to get it out of my mouth right but still do not. It is not as bad as it has been in the past but I am a little concerned. I did go to my H.E. group and asked if anyone has any ideas so we will see if anybody has had this before and what they did for this. I love that group it has helped me through some panicky moments. I also am getting the zaps in my skull again, I hate that, it hurts only for a brief sec or two, but it still takes me back and when it happens it happens for days at a time. Boy am I a complainer tonight, gee can not stand myself, lol.

Tues I start swimming. I decided I have to start doing something. I love swimming and my doctors have told me that is the best exercise for me with my issues, so just need to make a plan and do it. I just hate putting a suit on and going in front of people after all the steroid use, I think you who have been on steroids know what I am talking about. But I need to do this for me. I just hope it does not aggravate the small fiber neuropathy or the myostis as the night before last I sat in my chair with such pain (sfn) in my legs everywhere and in my feet, knees, crotch area, that no matter what I did or moved it ached. Like I had walked all day shopping. But I am going to give it a real good try.

I was going to start on this blog talking about my illnesses and what they do to me, what the symptoms were the treatments to see if it will help someone else somewhere along the line if they happen upon the blog. But really do not know where to start. Start from the last diagnoses or from the first that is the question.

I think it will be later today when I start the subject.

January 4, 2013

Hello, Today is a better day. I am not so darn tired as I have been for the past week. I still am taking it easy though as I feel nauseated for three days now and need to be careful because of the autoimmune suppressants I am taking.

Christmas and New Year is coming to an end. Although I will have my Christmas decorations up for a few weeks for sure before I take them down. I love the peaceful look that they have. It makes me feel good to see them at night, or day. Anybody who knows me, knows that I have them up right after Halloween. Many reasons I do this. Too many years in retail that taught me to do everything early and then too many sick family members and never knowing what may happen right before the Holidays so you prepare ahead. and now because of my energy level, it is not the same, getting everything up in a day or two. Now it takes me a week or two so I have to keep that in mind too. I do not think no matter how many years I have not worked I will still be the same person.

Legs are sore and hurt this afternoon. I have them up on the recliner, but still ache. I have noticed the last few days that it is harder to get up from a kneeling position then it has been for a while. I realize this is from a little over doing. to say the least. lol.

I am frustrated today because I have a friend on the Hashimoto's Encephalitis site in facebook that has got her notice for her disability hearing (her 2nd one) she said they have two expert witnesses that are medical doctors that are there to testify for the state that she does not deserve this. I am so angry at this. This disease is so rare, and is so misunderstood, how can they have any expert medical doctors testify against her. There are no expert specialists in H.E. So there is no way a reg doctor can know enough about her condition. The other thing is that all H.E. patients are different. Some are able to return to work to some extent. But this poor woman has tried several times and each time went into a bad flare. She can not remember, or speak correctly, extreme fatigue etc. She is like I am in so many ways. Sometimes it is hard to describe it to someone else because you learn to live with it and it is second nature to hurt, can not concatenate, fatigue,
  etc. I really hope the book we are putting together will help give creditability to the disease. With all the patient stories in one place, with treatments and physical complaints and downfalls. This should I think, help the disability people and the doctors along with the patients with H.E.

I personally know I can not work. I was told to stop working or it could really hurt me in fact I believe the word was it could kill me. So it left me with no choice for which was a good way to tell me to quit. I would have kept trying until I did kill myself because we needed to pay our bills, but the doctor took it out of my hands. Sometimes I wake up and think wow I think I can do something today, bu

January 2, 2013

Wow, 2013 unbelievable. I will not be able to write much today, used too many spoons from the last few weeks. I am exhausted. Hurt, and too tired to do much right now. Tommrow will be a better day.
Started out thinking it was going to be a good day, got stuff done until about 1:30 pm then could not push myself even one more min. Used too many spoons and then was already in the whole from the last few weeks. Shame on me. lol.

But can not wait to get back to writing in this wonderful blog.

The Beginning

Hi here I am. My own blog. My oldest son suggested this a couple of years ago to me, to help me address my chronic illnesses. I had just mentioned to him a day ago that I thought I would like to do this and here I am. I am so lucky to have the family I do.

I will warn every one who may stumble upon this blog that my spelling is bad, my grammar may not be perfect but my heart is in this all the way so I do not care this is me

As you see by the blogs title Susie's Autoimmune disorders. It is plural. I have many. The last one to be diagnosed is a biggie. Last November 2011  I was diagnosed with Hashimoto's Encephalitis/Encephalopathy. Which is going to be one of the reasons I may not always make perfect sense to all, or use the right words as it is hard for me to think or to express myself since being diagnosed with this disorder. I will just touch on this lightly as I will go through everything later. (I do not want to scare anyone away right away) lol. H.E. is an autoimmune disease for which your body attacks the neurons in your brain. This makes it very difficult to sometimes speak the words I want to speak, say the right words I want to use.  I have no concentration.Or walk straight and not run into the door way, or walk down steps without looking like I had a few too many. I will drag my right foot where it feels like I can not pick it up. This is just a few of the things I endure with this disease. But this is why I bring this one up now in the beginning so you do understand why sometimes you might think (what the heck is she saying) lol, or spelling lol. At least it is a good excuses for someone who has always been bad at spelling. But gee I was always good at concentration, and thinking, and talking was my job. That hurts. My memory was the best I knew of anyone having, but long gone is that.

Well enough excuses for me. Let me tell you what I have so you understand where I am. 
I am diagnosed with:
Raynauds disease
Hashimoto's (hypothyroid)
UCTD which is Undifferentiated Connective Tissue Disease with features of Scleroderma
Lymphocytic colitis (which is an autoimmune disease also)
Myositis (Rare autoimmune muscle disease)
Peripheral Neuropathy/ small fiber neuropathy
 Hashimoto's Encephalopathy (autoimmune, your own body attacks the neurons in your brain)
Inflammatory progressive myopathy (muscle disease).
R/A they are questioning but blood work comes back negative but hands look like I have it so waiting.
I have swallowing issues< Bladder Issues (Incomplete emptying and no pressure) due to the neuropathy and also the Hashimoto's Encephalopathybr />
IBS
High blood pressure
Esophagus reflux
Hearing problems
Allergies/Asthma
Photosensitive
Depression ( I hate to add this one) but since I am on lexapro and adivan I suppose I should.

They have told me in the past that I had lupus that has changed, then central nervous system lupus that has changed, then MS that has changed I was told point blank I had Systemic Scleroderma a year or so ago then changed to the UCTD with features of scleroderma.  I have been checked for everything you can imagine. So lets hope this list does not increase.

Anyone with chronic illnesses knows it is hard to be up all the time, the chronic pain, the doctor appointments, the inability to do things you use to do the way you use to do them.. It is frustrating to say the least. Some days you feel like wow I feel good, and you whip around the next day you are on your butt, grounded, can not walk it hurts, can not stand for long it hurts, your arms feel like they weigh fifty pounds each. Everything you do is an effort. It makes you feel lazy and guilty. Then there are the days you think you can go shopping because you felt ok at home then you get out of your car and walk twenty feet into the grocery store and it hits  you, your legs feel like lead weights, you have to pull yourself along, hang on to the cart, pray you make it through the store and get home. The problem is you just can not predict. Nor can you predict how you are going to feel. You can not plan anything to far ahead. It is always last min. There is a great theory some one wrote called the spoon theory which pretty well does describe how people with chronic illnesses feel or handle activities. It basic says if you start your day with 7 spoons and use 3 to vacume 2 to cook dinner, 1 to shower you only have 1 left for the rest of the day, what happens if you have a doctors appointment which is usually for me a 4 spoon experiences, or what if you need something from the grocery store that is 5 in its self. where do the spoons come from, my theory on this theory is that when you use more spoons then you start with, you are now going into the next days reserve. Which sooner or later you have none left and are grounded to a bed or chair for the day. Or worst yet, you may have a flare in one of your diseases if you do this too often. it is a real balancing act of energy or importance. I have learned the word NO finally at the age of 58 and also I have learned what is important to me to do. This was a learning journey to be sure.

Well I will be back, time to go and plan the new year that is here.
Susie