Where did the time go?

Ok, so I had every intention of writing this fabulous post about Cystoprotek (a supplement developed to treat IC) and the doctor from Tufts U. who has researched/written extensively about how inflammation in the body is linked to Fibro, IC, IBS, etc. However, to do the topic justice would have taken quite a bit of time, and with everything that's been keeping me busy, that task became quite daunting. So, I'm going to break it down a bit so that it's more manageable, meaning that I will delve into the topic over a few posts.

First though, an update: I saw my ob/gyn (Doc F) again on Thursday, feeling great because my IC had improved significantly since following the IC diet and taking the Cystoprotek. While I had good and bad days, I could reduce the number of flares I had by being consistent with my diet. He was quite impressed by the level of improvement I reported and was okay with my decision to not try Elmiron, a prescription med for IC; however, Doc F also had some disappointing news. He had done a little more research about Cystoprotek and the individual ingredients in the supplement. One of the ingredients it contains is quercetin, a bioflavonoid that has anti-inflammatory properties. While it's considered safe in recommended doses, it is not recommended for pregnant women because laboratory studies suggested it could cause chromosomal mutations in bacteria. While there isn't any evidence that happens in humans, it's prudent to avoid the supplement during pregnancy just in case. Doc F assured me that I could take it up until I find out I'm pregnant and then to stop it immediately. That's a little scary since a tremendous amount of cell division and growth occurs during those first days after conception. I went home pretty bummed, worried that the only supplement that seemed to be helping my condition could potentially (although the chances are slim) cause harm to my (future) pregnancy.

On the plus side, the soy lecithin that I'm taking for my brain fog (recommended by my rheumatologist) and Polycystic Ovarian Syndrome (PCOS) is perfectly safe, even during pregnancy. Info about supplements and PCOS will be in a future post, so to all my menstration-ly challenged sisters, be on the lookout for that post in the upcoming month. : ) As an aside, my doctor got a big chuckle when I mentioned I was taking the soy lecithin for brain fog. He smiled and said, "Claudia, out of all my patients, you are the last person I would ever think had brain fog. You are probably my most well-informed, intelligent patient. I even have trouble keeping up with you." I thought he was teasing me but he repeated his statement and added, "I meant that as a compliment. I mean it." I have to admit, getting that validation felt pretty great because I had feared that he just thought I was a big hypochondriac that spent too much time doing research on the Internet. Well, he probably still thinks that, but at least he values the effort I put into getting myself well again.

I guess I had spoken too soon when I told Doc F I felt much better because a couple of hours later I was in tears from IC pain. At first I attributed it to the disappointment I felt after my appointment, but a couple of days later I realized that the tortilla chips I had been eating were fried in sunflower seed oil. I had discovered earlier in the week that sunflower seeds trigger my IC. The day of my appointment, I had gone home and munched on a big bag of organic corn chips, but it was a brand I hadn't tried in the past and I hadn't looked at the ingredient list, except to make sure they were GFCF. Turns out they're fried in sunflower oil! As soon as I cut them out, my IC pain improved...well, that is until I went out to dinner the next night with a bunch of my school psychologist colleagues/friends. I was determined to prove to myself that with a few Prelief and my Cystoprotek that I could have a few IC forbidden foods and be ok. Well, I wasn't. I had tomatoes and vinegar on my salad and a glass of white wine with dinner- big mistake. That night and well into the next day, my IC pain reared its ugly head. Seems that my hour of pleasure would end up causing almost 24 hours of misery.

I know there are some people out there that may think that the improvements and setbacks I experience are due to the placebo effect. Maybe to some degree it's possible, but it doesn't mean that it's all in my head. Believe me, if it were, I'd will myself right this second to be able to eat a slice of pizza and a piece of chocolate layer cake without any pain or ill effects. Yummy!

Today I made the mistake of eating an organic hotdog with mustard. I don’t know if it was the dog, the mustard, or the combo that made me flare, but I’m paying for my food choices once again.

I’m pretty sick of feeling like a freak on this restricted diet. I know that it helps, but it’s not fun feeling as if every bit of food you put in your mouth could hurt you.

Let’s hope this doesn’t last for cento anni!