2nd Round Of IVIG Is The Side Affects Worth It?

Yes, Yes, Yes. The side affects are worth it. I did have the headache from Hell again, had to hide my head in pillows so no light would hit my face and eyes, could not move because of the pain. My pain pill did not touch the headache pain, took extra strength Tylenol instead. But here it is one week later, and I can tell you it is so worth how I feel.

Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.

So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as  my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.

IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover  this treatment. This is too bad. It will add such a better higher quality of life.

It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.

RASH, HIVES, HE, IVIG, CONNECTIVE TISSUE?

Well now, lets see rashes all over my legs, on both arms, lets see what could it be? From the IVIG, the HE, Connective tissue disease, photosensitivity? So what is it from? Should I go to the dermatologist, the rheumatologist, the primary? Who should I see? I pray it is not from the IVIG for I would not want to stop getting that miracle treatment. But what ever it is I have had it for a week, slightly itchy but it reminds me of what I had back before all of my dxs of the autoimmune  diseases. I had a rash/hives on the back of my legs from ankle to butt, then on the arms, and it lasted for  8 months, yes 8 months, had treatments of creams, powders, pills, steroids, I had it all, steroids would stop the intense itching for about a day or too, but when the steroids were done the itching came back. So much worst at night. I stopped wearing pantyhose, tights, had to wear the loosest clothing I could find as not to irritate it more. So watching it close.

 We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a  connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.

Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think  about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.

That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.

Now really that is enough, lol. Done, finished.  To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org  web site. They are very nice and would help to fund research on this very rare disease.

Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.