Friday, May 27, 2011

Another day, another issue : FSGS Sucks

I felt like I had been hit with a brick when I woke up this morning. No, left eye socket was so tender to the touch that I knew it could only mean one thing....SINUS INFECTION. Great. Here's what happened the last time I had one, which is why I was so worried. Luckily, I was able to get in and see my PCP, Dr. Wallisa, before the holiday weekend. I got some drugs and am hopefully on the mend very soon.

I also got the biopsy report from my colonoscopy, and it appears that I have collagenous colitis. I have no idea what that means exactly, but from my cursory review of Google, it's something that's going to be hard for me to treat. There are lifestyle changes (i.e. Food) and drugs (prednisone being one) that make me want to cry.

I don't want to be on prednisone for two big reasons: it sucks sucks sucks, and it would negatively affect my ability to be in the clinical trial. And the food part seems to be impossible, partly because I have no willpower, and partly because at this point, I have no idea what I'm even supposed to eat. Some of the things it says to restrict are my favorite (dairy, raw fruits and vegetables). High fiber food (which keep me fuller longer) are also not advised. In order to do this, I need a full-time nutritionist and chef. Seriously...the amount of mis-information out there is staggering. There are a whole lot of people that claim going gluten and allergen free "fixed" them. I don't buy it. There aren't a whole lot of things that are that enjoyable right now. And I know that the dietary restrictions are super-strict when going on dialysis, which I'll have to do at some point. So I sure as he'll wanna enjoy food while I can.

Dear God, I'm becoming one of those know, one disease that manifests into a host of others? Hmmm..the human strong and yet so fragile.

1 comment:

  1. Hi - I saw your blog on the Nephcure Facebook Page. :)

    You're right that there is a world of differing and competing lists. I have three lists of high and low Potassium foods that we keep on the fridge. Not easy, and surely not fun. I have not had a banana since 2001, and now I can't even stand the smell of them! Lifestyle changes are made easier when it directly effects how you feel on a daily basis.

    Wishing you luck with your journey - through the strange diagnosis and all!

    (And the other thing that sucks about Prednisone is Moon Face.)


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