Next IVIG

I had an appointment with my rheumatologist Weds. He is the one that recommended for me to receive the IVIG, convinced my insurance company that I needed it. I so appreciate all his effort. But anyway went Weds to discuss what to do with the severe reaction I got from the first dose of IVIG. He and I have a plan for next month when I receive my  next round of this magical IV. We will divide the dosage up into three days. We will slow the drip down so that I am not receiving it so fast. So I am thinking I will be there for about six hours instead of four and a half for three days in a row. This is fine with me. I want it to work, I want to feel better, I want to be able to walk for longer then five mins. Take the dogs for a walk. Shop with my girls. This is my goal. But I can not tolerate the headache. I know now I should have gone to the ER. But I am stubborn, but next time, I wont chance it. I will go if it gets that bad again but hopefully it wont with the changes. Dr. also said he will order a IV of some anti nausea meds also before I get the IVIG. The other pills he ordered for me I will take the three days of the IVIG to help calm the headache. We will go from here and see how this works. Crossing fingers, toes, legs, arms, lol what ever I can cross.

By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.

I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.

Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.