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.