Being Brave: Sharing a Diagnosis

Sorry friends who read my blog. I haven’t written anything in a long while, so here is my explanation. Edit: Someone pointed out to me that it is really ironic that the very foods I have written about have been causing me pain. It’s true. I normally wouldn’t bare my soul to the world like this, but since it directly impacts the work of the blog  I think I have to bare my soul.

Sometime in February my health started to go awry. I’d been having issues – mostly pain when I ate – for a while. But I just figured it was endometriosis which I also have, and thought it was something I just had to deal with.

Three weeks ago I found out that I also have something called interstitial cystitis. This has limited my ability to eat a lot of things. It’s not like an allergy, and it’s not like eating foods actually causes the disease.

It’s not like that. What it is is this: my bladder is chronically inflamed. When I eat food it hurts the inflamed bladder. There are maybe a bajillion ulcers in my bladder. The lining in my bladder has been eroded. No one knows the cause, but they do know that there are certain “triggers” that aggravate the condition and cause the pain.

In short, foods did not cause this. It’s mostly associated with autoimmune diseases like lupus and endometriosis.

The pain has been compared to the same levels as those with end stage renal failure, and cancer.

What does this mean for me? It means that I’m on a treatment plan to restore the lining of my bladder (taking Elmiron). After discussing this with my doctor, we decided this was the best plan of action. I may lose hair, or bruise easily, but it’s worth it to me.

What does this mean for you? This means I’m not writing as much. In fact, most of the foods that I love to eat because of the taste and because of their healthful aspects I can no longer eat, or I can only eat them rarely and when I take something else with it called Prelief. This include:

  • alcohol
  • orange, grapefruit, citrus juices fruits, etc.
  • curry
  • pickles
  • yogurt
  • salsa
  • tomatoes
  • tomato sauce
  • blue cheese
  • beer
  • kimchee
  • bacon
  • smoked meats
  • hotdogs

(the list is longer than this, but here’s a sample)

Things good for me:

  • milk, ice cream, cream cheese, cottage cheese
  • beets, asparagus, pears
  • some breads, pastas, quinoa, eggs, meats without nitrates
  • cake
  • oats, spelt
  • maple syrup

Please try to remember, it’s not a food allergy, and that the foods listed above cause me severe pain (for me, orange juice is the absolute worst thing on earth). I don’t have much pain with other things I do – and the pain with food was my strongest symptom (along with peeing all the time, but you don’t need to know about that).

I’m looking forward to meeting other people with this condition. If you’re out there, contact me. I’d love to chat.

There. I’ve come clean. Now you know why I haven’t been writing much.

2 thoughts on “Being Brave: Sharing a Diagnosis

  1. I feel like a bad new friend I guess I had tunnel vision & didn’t read. I think your an AWESOME chick and hope we will become great friends hair or no hair. Stay strong, live large & smile whenever possible. I will work on making you laugh as much as possible. You may have to install a shock collar to get me to stop..
    If I can help you anyother way just let me know.

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