Well This Week Kicked My Ass

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It started last Saturday when a gastroparesis flare struck and I had to spend the next two days recovering from it. I was on liquids only, but I had my photo shoot for the book cover–which I knew was going to be a long day.

6:00am– Got up, took an hour exactly to do my hair

7:00am– Make-up artist came, got airbrushed and eyelashed.

8:00am- Photographer came and helped me find the right shoes to go with the hospital gown I would be wearing for the shoot. Last check on hair and make up…

8:30am–Arrived at Howard’s Market with our props (an IV bag and pole) set up in the vegetable aisle where we did a few shots, then the meat aisle. Lots of reaching for things on shelves, balancing in high heels. Stomach is growling at this point, but can’t even have a Boost because I can’t risk stopping the shoot for a bathroom break.

9:30 – Head to second location after making a pit stop at the apartment to change shoes and touch-up make-up. Second location is a laundry mat, climb a short ladder in heels to hoist myself onto the top of one machine with biology books, IV pole behind me.

10:15- Head to third location, The Arboretum, a park near my house. Do a few very zen shots in the middle of a field.

10:45- Back to the apartment for headshot photo prep, change make-up, outfits, shoes…

11:45 – Over to next location to do head shots.

12:00– Get back in my car and immediately down two bottles of Boost and half a bottle of Gatorade. Great success.

No preview shots yet! But soon!

Unfortunately the gastroparesis flare persisted over the next few days. On New Year’s Eve my plan was to get a small bowl of rice at the Hibachi restaurant we had reservations at. Maybe a small bowl of soup and rice would be okay for my stomach.

We had a 7pm reservation for seven people. We were bamboozled by the restaurant though and didn’t end up getting a table until almost 10:00. I was so delirious from hunger at that point I went ahead and ordered a regular Hibachi dinner. And While I only at the soup and the rice while at the actual restaurant, I later went home and ate another portion of it including the shrimp. For my first solid meal in a few days it wasn’t a great idea.

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The gastroparesis…it’s not something I like to go into great detail about because it is an irritable bowel disease and I rarely feel like discussing that with my GI, let alone the world. But suffice it to say that my experience has become so severe and frequent at this point that it’s having major ramifications on my every day life.

It’s no longer an issue of planning my meals around my day–it’s planning my life around the motility of my stomach. To the point where a meal I eat today could have huge implications three days from now. It’s become impossible to make plans, I’m in constant abdominal pain, I’m taking a ton of medication that has slowly become less and less effective.

And things are out of hand, and have been for the last two years.

So I went to see my GI this week and I’m going to have two tests done next week to measure the true motility of my stomach. If the tests show how severe it has actually been for me–then I’m going to be having a consult with a surgeon about getting a gastric pacemaker. This has been on the table for some time now and while I’ve had little support about having more extreme surgeries–it’s become obvious that the alternatives are fleeting at best and completely ineffective at the worst.

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What would it take for me to have the full control of my digestion so that I could make plans, go out, need less medication, need fewer IV’s, feel more in the moment, worry less about my diet, not feel responsible for all my flares and actually enjoy my life instead of constantly wondering how I’m going to get through the next impossible hurtle?

 

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