I had thought I had pretty well come to terms with the fact that I have a life threatening immune deficiency. I was diagnosed three years ago, and spent the first two years dealing with the fact that I might die in the near future, rather than several decades from now. I know that any one of us could die at any moment due to an automobile accident or a natural disaster. But when you are told that you are immune deficient and are going to be dependent on gamma globulin treatments to keep you alive, your perspective changes. Radically. It took me two years to get my head around that fact.
Done, right? Ummm… unfortunately, no. Not done. Not done at all. As I move into my tenth month of medical leave, I realize that I can no longer be sure how long this leave will last. I am still definitely improving. I now have several good days a week, which will enable me to return to work two days a week starting in the middle of May. I’m a teacher. I miss it. I keep thinking that I want to be in my classroom with the kids. So being able to go back two days a week for the last month of the school year is great!
But then I start thinking of all the changes I will have to make to my approach to teaching if I want to continue to teach. I will need to be less nit-picky in my grading. Not stay at school for hours after the students leave conferring with other staff, planning, cleaning my room, designing tests and projects, and all the multitudinous details that go into making a classroom run well and smoothly. Or at least the details that I think are necessary to make a classroom run well and smoothly. The changes feel overwhelming, but I know that if I don’t make them, or at least some of them, then my teaching days are numbered; I will have to retire long before either my finances or my emotions are ready to do so.
So here is the new part of the grief that is biting me in the back. My head had come to terms (of sorts), with dying. None of me had come to terms with living with the disease, and all of the life changes that it would necessitate. I really truly did think, that if I got the gamma globulin infusions on schedule, and just kept doing the things I was used to doing, that everything would be OK. I had thought that the infusions would give me a normal life. And they don’t. They enable me to hold on to life for far, far longer. And they enable me to do many things that I care deeply about. But I can’t seem to get my old life back, even though I thought I could. And that is so, so, hard.
Zebra's Child 
This must be so hard. Sending you my best wishes for as much improvement as possible.
Thank you. Knowing I have the support of others has been, and continues to be, essential to my healing.
Hannah,
This post describes me to a T. I was diagnosed with CVID when I was 54 and started with a low dose of IVIG every 6 weeks, but as my condition changed the length of time between infusions was shortened and the amount of IVIG was increased. I am now getting 50 grams every 3 weeks; however that could change at any time.
Anyway, I continued working for 4 years after diagnosis, but as time went on my body slowly started to weaken. I developed several autoimmune disorders and finally, almost 2 years ago, I went on short-term disability. Naïve me thought that if I rested for a couple months, my body would strengthen and I would be able to go back to work on a part-time basis. I was very fortunate that my company was willing to work with me on days and hours, however my return lasted 3 weeks before it became apparent that I wouldn’t be able to continue. So, as of August 2008, I have been on total disability.
Your statement ” My head had come to terms (of sorts), with dying. None of me had come to terms with living with the disease, and all of the life changes that it would necessitate.” should be the motto of those of us with a PID.
The life changes are so hard. I am constantly grateful for the support I have of family and friends. I don’t think I could do this alone.