in reply to @j77 You know, I had an two iron infusions this past summer and had allergic reactions after each infusion, even though I was given IV benadryl, and then it was weeks before I felt any positive effects of the infusion; I am told this is common. I truly felt sick for a few weeks following each infusion and swore I would never have another one UNTIL I began noticing that I felt like a racehorse so to speak.
A friend, actually someone I met on this platform, sent me an email this morning suggesting that while my clinicians have no clue as to what is wrong with me other than that I have no immune system and more likely than not autoimmune disorders, that perhaps I am "helping" them in some way on their way to figure out what is wrong with me. I do plan to donate my body to science when I die with the hope that upon studying my various parts, students will learn something different. I don't mean to sound morbid when I say this, as I do have on my advanced health care directive that I am not an organ donor, with the exception of my corneas if they are viable for someone to see. Afterall, I am an artist and a very visual person.
I sometimes feel I have lost my resolve, and have finally come to terms that maybe my doctors really don't know and that I am expecting some kind of miracle drug, procedure etc that will "cure" me. However, I know that we are all imperfect, even the best of doctors are not magicians, although many would like to believe that they are. I believe that my doctor "usually" has the best intentions, but I accept that he is limited because I have such a variety of different symptoms. Being an information junkie, I often ask too many complicated questions or challenge my doctors because I have read so many different scientific articles online. Not Dr. Google, but medical journals and things of that nature. I have also connected with different organizations such as the Immunodeficiency Foundation, a non profit organization which has been very helpful to me. There is another wonderful non profit, the 50-State Network, and I have joined them to be an advocate for those like you and myself who are searching for answers, writing to congressmen/women in an attempt to persuade them to pass legislation for those of us who might have insurance, but are denied discounts on expensive medicine just because we either have Medicare, an Advantage Plan etc. For example, my neurologist prescribed Nurtec for migraine headaches. This is a new drug, and I think even Lady Gaga is one of the manufacturers "spokeswomen." I thought the drug was a miracle, but after filling it twice my copayment went up about 500 percent. While I was directed to the manufacturer for some financial support, I was denied the same because I have Medicare and an Advantage Plan. Had I known what the cost of the drug was, I never would have filled it, because after filling it twice I was thrown into that Medicare Donut Hole. Think: BIG PHARMA.
It's really too bad when we cannot get a straight answer, or are told that because a certain test result is within the "normal range" there is nothing to be worried about, when in fact there may be. For example, I get frequent UTI's, which can be related to one of my conditions. The urine cultures come back with blood cells etc, yet I am told my test results are "normal" because the culture was negative. I will be having a cystoscopy next month so my doctor can look inside my bladder. If you also get UTI's, I would recommend UTI FREE, a website developed by a doctor who had the same problem I have been having, and she developed the site for women like me/you who may get frequent infections. The information on that website is over the top fantastic and you can even download a questionnaire that you can take to your doctor so you remember to ask the right questions. I realize I am going off on a tangent here, but I saw your response and wanted to get back to you, especially because you mentioned being an artist and understand how helpful art of any kind can be of such comfort and help when we are afflicted with just about anything.
There was a fellow on this site who spoke about the iron infusions because he had either had an infusion or had done some research into what happens when one gets an iron infusion, and he declines to get one, and instead found a company that dispensed liquid iron. I cannot take iron supplements because it causes massive stomach issues. If you need another iron infusion in the future you might want to consider the liquid iron, as it might be what has caused your problems. A lot of information can be found on NIH or the Lancet. Or the Cleveland Clinic. Reliable sources of information that is tailored for professionals, but of course, their articles are also available to the public and are easily understood if you know basic medical terms and things of that nature.
It's great to learn that you too are an artist, as I know without it, I probably would have "done myself in" by now, however, since I became sick, I discovered that my creativity expanded like never before. When I am working late at night, listening to music I feel as though I have been taken to some kind of "outer limit" and my creativity explodes. I am sure you know the feeling, and it can be very exciting to step back in awe as you look at what you have created.
Like you, I went from fairly healthy to not in a very short period of time. Interestingly enough, all of this happened after my "hearing dog" had to be "put down." However, she was always putting her nose where my liver and pancreas are located, following me into the bathroom and things of that nature. I was certain she was on to something, and while I do not have cancer(yet), my doctor was very interested in my experience. In fact, I somehow came to terms with her death by convincing myself that she knew I was sick, and "leaving" me may not have been intentional, she left for a reason. I hope this makes sense. She flew off the sofa at dinner time, landed wrong on her leg and let out the loudest yelp I had ever heard. She was a pitbull mix and NEVER barked unless I told her to "speak." Initially I felt great guilt because I did not have the $4K to put her leg back together, but in hindsight, I really think she "knew." I think you "get it."
Stay in touch. I want to be healthy just like you, however, as I have said before, being sick has really turned me into a much better person in so many different ways. I never really thought highly of myself when others did until I got sick and began to understand the importance of gratitude, humility and things of that nature.
I am so sorry about your dilemma, and while I cannot get inside your head, I do understand how you "might" be feeling, and I wish I could offer you more than these words tonight. Prayers are good. I pray to the "universe." Whatever works, right? We can do this.