Hello friends and family,
I know that it has been a really long time since I have updated this site. Let me tell you all what has been going on in the last few weeks.
Well, after suffering through about 6 weeks without the narcotics, I am FINALLY back on the pain meds! I have never been so miserable in my entire life during those 6 weeks without any pain relief. I did not get ANY sleep because I was never comfortable. My stomach was SO bloated, I looked like I was 7 months pregnant. Actually, I still look like I am pregnant....I am starting to wonder if my stomach will ever decompress.
About 3 weeks ago, I had a raging fever for a little over a week. I had to take Tylenol every 4 hours just to keep it down. I also had a significant decrease in the amount of urine I was making and severe back pain. I finally realized that I had a bladder infection. I went to see the doctor and he was very concerned that the infection may have backed up into my kidneys. He sent me over to the hospital for an ultrasound of my kidneys and bladder. I found out yesterday, that the kidneys were NOT involved in the infection (thank you God!) however, they don't know why I had a decrease in urine output.
I also have been having very severe joint pain and joint swelling. It is VERY difficult to move around right now especially up and down stairs. I don't know if this is a result of another immune attack or something else, but I would prefer that it go away.
I also saw the immunologist last week and they now are saying that the main problem is that I have two blood types; I have A-red cells and o-red cells. They each recognize the other as foreign and unfortunately, my body is the battle ground for their fights. There has been some very early talk of a bone marrow transplant, but ultimately, they don't know yet how to best treat this.
I get IVIG tomorrow. I am hoping that this will help a little with the joint pain/swelling.
I think that is it in a nut shell. I have plenty going on right now. I hope that you are all doing well!
Love, Arianne
PS-To my augie friends: Thank you SO much for reminding me that I still have things to laugh about! I have not laughed that hard in a very long time. Thank you also for reminding me that I can still have fun even in the midst of all this pain. I love you will all my heart.
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