I love the holidays and always have since I was a little girl, (many, many years ago). lol. So when I knew I had to have a three day treatment of IVIG during December I was bummed out. It is not just the three days of sitting in a chair hooked up to two IVs for four-five hours, but it is the sickness that comes with it for days after. I was still nauseated Monday after having the IVIG Wed, Thurs, Fri so sick Sat, Sun and Monday and hoping today is better. I have hope. But gee it is Dec. Who has time to take a week off in the middle of Dec? lol. But I have made myself understand it is ok. If I do not take care of myself then how can I enjoy my family when they come for Christmas, or that beautiful Grandbaby. So sit on my butt and do nothing for six days and just know I will get everything done regardless and if I don't, I have a good excuses lol.
I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.
I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.
Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).
I love you ,
Susie
