Well "crap" is all I can say, as the infusion RN called earlier to confirm my infusion for tomorrow morning, and she did not get the order for the IV saline. I am on my 9th bottle of water so far today. LOL. Losing a lot of electrolytes, that is for sure. Having this disease is mostly frustrating because there are so few immunologists, 2 in my area, and trying to get a response from them is futile. In any case, I have worked up myself again in anticipation of tomorrow and at this point can only hope for the best. If I could stop getting upset each time I think about it, I would probably feel better. "Oh well." This is why I abhor "all things medical," especially because I am scheduled for an kidney scan soon and an endoscopy/colonoscopy next month to address the ulcerative colitis problem that has returned with a vengeance. Don't get me wrong, I am not hopeless, just frustrated at the lack of understanding of PI and that it was inherited. I feel "exposed" in some way because all of my neighbors still stare at me when I walk by, because of the weight loss. I suppose "there is no going back" and I just have to learn to accept that this is my journey and I will simply have to try to do my best to cope with the "fallout." At the very least, I have joined a church and have met some wonderful, nonjudgmental people, and next week I am volunteering at the local food bank, now that I have stopped being a "caregiver" to my demented friend. I have a new "purpose," and this has made all the difference in the world. Thank you again for your ongoing support. No one told me I would feel so alone following my diagnosis, and this is something I am trying to come to terms with. While the IDF has some great support groups, they are all on the telephone/Zoom, and with my hearing problem, I really do not get much out of them. However, I did meet some nice people at the conference, including a renowned immunologist who took I had dinner with after she heard me say did not want to have the treatment, and encouraged me to think of it as "gassing up the car once a month...." LOL,
Thank you again for all of your kindness and support