Monday, March 30, 2009

Digestive Hell

The past 4 or 5 days have been hellish, internally. The swings between constipation and diahrrea seem nothing short of absurd. The pain...ohhhhhh, the pain. Sort of feels like someone has poured acid into your gut or you have one of those super huge farts that swirl around and can't come out...I've been bloated; I've poo'd; I've farted; I've burped; I've belched and every other unladylike thing that the gut can throw a person's way.

The meds I'm on aren't helping this. Or maybe they are, and it's relative...I'm experiencing what I'm experiencing and that's on top of the meds? I dunno. I DO know that dairy and meat are not my friends right now. I can have these things sometimes, and then...I can't. I never know until I have them, how I'm going to fair. And, until the past few days...I could deal with the discomfort. However, pain has reached new heights for me...and curled up on the futon downstairs so that I don't disturb anyone else in my house, with a hot beanbag, heatpad and hoping that someone will shoot me ISN'T ok.

So, over the weekend, during this hell, I put my thinking cap on. Not easy with the brain fog I so often have to deal with. Nothing like being a total moron when you've spent a good chunk of your life being functional. I know my sister, Jennifer, when her cancer was in her gut would stick to a macrobiotic diet. So, I'm going to take my cue from my dearly loved deceased sister.

Day 1 (today)
Oatmeal (steel cut oats...not instant or quick cook), organic of course. Mixed with mostly water and a wee bit (like less than a 1/4 cup) lactose free, organic, milk. A drizzle of Maple Syrup (that we made ourselves!) Organic raisins. Organic Hemp seed sprinkled on top, after cooking (don't cook or heat hemp!) A cup of green tea (the real, loose leaf my cool teapot with the built in tea strainer.) A cup of water. Supplements.

Post urge to run to the loo and no need to light three sticks of incense.
Almost lunchtime...ditto. Pee'd twice without incident. Well, except for being bright yellow from the supplements. Weeeeeeeeee hOOOOOO!!!!!!!!!!

Miso soup, with teaspoon of garlic (diced, raw), wakame seaweed, soft tofu...cubed.
1/4 cup brown rice, with soy sauce
1 slice left over quiche (that I made...this one was cheese, but with zucchini, parsley, sundried tomatoes, garlic, spring onions and cilantro...YUMMERS!)
salad - which was really butterleaf lettuce and a couple springs of raw, organic, brocolli.
Green tea.
A cup of water.

So good.

This is my first day of non-vomitting. No diahrrea or constipation cramps so far. AND...the pain is starting to subside. I had acid reflux yesterday all afternoon and I NEVER get that.

Will be switching over to vanilla soy milk when my husband gets home from work.

I feel completely fragile. My world has just gotten infinately more smaller, yet again. And it wasn't very big to begin with. So, I'm going to breathe in, try to enjoy what I can. And, ignore those cheesecakes in the fridge. Think I'll put them in the freezer for a rainy day. Someone else's rainy day, that is. Guests?

Thank the Lord for small my not being a caffinated person any longer. I gave that habit up about a year ago and am better for it, overall. Withdrawal was a bitch though. However, I AM glad that I no longer NEED a cup of coffee or tea to get me through anything or going. I wake up ready to roll....assuming that I've slept.

I feel like my period is about to start, and for many Masto folks (well, women folk) this is a time of month when we find ourselves reacting in a huge way. I know 9 times out of 10, I am in hospital when I have my period. I know this because I fret about it...smells and going too long without going to the loo. One of the complications of being a woman with this disease and these reactions. So, I'm wondering if this is compounding the digestive sensitivity?

This all continues to be a bit elusive and a big mystery in a lot of ways. We desperately need funding for research for this incurable disease. There HAS to be a solution...or some common thread that ties all us Masto folks together? This can't just be an 'orphan' disease...


Foxxy One said...

I don't know if this is an option for you or not but...

I had horrible issues associated with my period. I finally said enough, went on the pill... continuously so no more period = no more issues.

Feel better soon!

Gypsy Princessa said... seeing my Oby/Gyn about all this on Friday, and my Immunologist in Toronto, tomorrow.

Just got home from hospital. ugh...