Hi Andy!
I've been meaning to get back to you on the whole food thing since you first mentioned it and I'm sorry I have been unable to until now.
In regards to certain foods being triggers, yes, there are certain foods that are triggers for me - peanuts and too much nitrites and MSG in addition to the normal oxidative foods to stay away from - and I have taken great care to avoid them if at all possible.*
The GI-area-but-not-GI pains + side-where-the-spleen-is pains that I mentioned in previous posts can sometimes be linked to me accidentally or not-so-accidentally consuming something related to those trigger foods. For example, when I was trying to figure out if peanuts were affecting me or not a few years ago, I ate perhaps one serving and a half and perhaps a day later, experienced those side/GI-but-not-GI pains. Granted, I had just gotten over a bout of such an episode of pain so I think my body was still under stress at the time and so responded perhaps a bit more sensitively than normal to it, but the results fit everything else I had noticed and would continue to notice in the future.
The back pain on the other hand, seems to be directly related to me simply physically pushing my body too far. Working for long hours without resting much, running across campus all day for classes, going on a too-long hike, etc. Of course, eating foods that further aggravate hemolytic stress does NOT help in such cases but almost always, that is not the core cause for the back pains and the increased bilirubin in the urine.
In regards to my appointment at CHO, I am really crossing my fingers and toes. I have written up a short letter explaining my thoughts on my current thalassemia condition (for them) and a question sheet (for myself when I go in) and I can't help but be anxious as I await my appointment.
The last time I was supposed to see Dr. Vichinsky, I ended up seeing someone else in the hematology department and on another trip, I saw yet someone else still at the hematology department.
On both occasions, I got referred to a GI specialist for the side and not-GI pain (which had been my primary complaint at the time - increased unexplained pains and increasing/worsening problems with fatigue, etc) to see if I had an ulcer even though I had JUST finished seeing a GI specialist who had already done all the tests - including an upper endoscopy and all the biopsies and cultures related to it - that showed I had nothing even remotely resembling an ulcer or acid reflux or anything else. The GI told me point blank that my issue was more than likely not a GI issue and CHO kept suggesting that it was probably a GI issue and wanted to order more GI-related tests even though I had no other symptoms of GI problems.
The frustration that came from that particular incident - reaching a standstill in what to do next with one doctor saying one thing and another doctor saying something else and being shuttled between them with the thalassemia not being taken into consideration for a possible cause for my symptoms and then consequently feeling like I wasn't being listened to - is what makes me a bit apprehensive and anxious.
I have to spend a decent amount of money to go to CHO since I don't qualify for government aid of any sort since HbH is not typically considered a qualifying medical condition and if the answer is going to be, "You might have an ulcer," (no, I DON'T have an ulcer, thank you!) or something akin to, "There is nothing we can do for you and you just need to live with this," then why pay that kind of money?
Even my own PCP could give me the exact same words of advice except he wouldn't suggest GI issues being the culprit of the pains at all amongst other things - especially not after all the GI diagnostic testing I was forced to undergo.
I hesitate to be so open in saying these things because I have otherwise had a good experience with CHO and the doctors and nurses and staff there (including the ones who tended to be in both of those instances!) and I really don't want to offend anyone, but at the same time, I AM saying the truth (please, SOMEone believe me!) which is why I am nervous and anxious.
Honestly, I have never been so anxious about an appointment in YEARS.
Considering that my PCP is wanting me to seriously consider a splenectomy and has prescribed psychostimulants (think of Ritalin for ADD) as a very last resort to help boost my energy so I can make it in and out of work (because I HAVE to work) and considering the amount of various otherwise unexplained pain I have been in over the years, I am more in need than ever to find guidance on what to do and where I can go to for help.
Thanks so much for your advice Andy; I cannot express to you just how grateful I am and will continue to be for your support, advice, and listening ear and the support, advice, listening ears, and experiences offered by others on this message board.
*Going back to the topic on food sensitivities, something to consider, too, is if a person - any person - has normal not-thal-related food sensitivities in general. If someone is allergic to wheat products and/or gluten for example and they also have thal, I think it might be logical to suggest that perhaps the pre-existing allergy can interfere and interact with the thal and maybe cause similar hemolytic problems as the allergy provokes an immune response which can then entail who knows what. Just a thought that I have been thinking on.