Cloudy with a Chance of Crohn’s Flares

Blog post

[Photo image of three spoons laying on a computer keyboard with text that reads “Cloudy with a Chance of Crohn’s Flares”.]

They told me my Sedrate and CRP (inflammatory indicators)  were up a while ago. Not too out of the ordinary for me. It was 33. I didn’t feel any worse than I normally do. While they did my botox injections into my pyloric muscle (stomach) they said they saw signs of Crohn’s in my stomach and esophagus. Another contributing factor to getting the NJ tube.

Despite this I’ve continued to push on because with my ileostomy it wasn’t effecting me bathroom wise so I wasn’t in the bathroom half the day like I normally would have been. Admittedly, I am fatigued and sore and stomach hurts, as well as my throat. No more so than normal though. When you live with so many chronic illnesses you get used to pain, unless it’s an 8 or 9, (10 being I pass out from pain), I typically go about my day as I normally would.

[Photos above are me holding a spade and some flowers and then a photo of flowers lined up on a porch with some fairy houses shaped like mushrooms]

I have been channeling any negative feelings I have into hobbies to keep me distracted. Things like gardening, crafting, cooking, I even scheduled to get my next tattoo. For example gardening. I’ve planted my herbs for the spring and some strawberries and flowers for bees and butterflies.

It makes me extremely happy to do so, but my body is not a fan. My joints have been aching and subluxing and dislocating more again so I’ve been relying on my cane regularly but overall still pushing through because I didn’t think it was too bad.

[Photo above features, me in a blue dress with fish along the bottom, in black boots with a cane and feeding tube with a little mermaid necklace. Small girl, my cousin, in an Elsa dress, and then two taller ladies dressed as Elsa and Anna from FROZEN. And the second photo is my black feeding tube bag with pins on it, including pins from Star Wars, one that says “Can You Not”, one in Sign Language that spells out “Bite Me”, and then a Scottish Thistle pin.]

Today I went to a Princess themed breakfast with my cousin to support our local Roller Derby girls (Hades Ladies). I dressed as Ariel and she went as Elsa, and we got our photo with Elsa and Anna. Then we headed to the Celtic/Scottish Heritage festival.

On the way there I quickly checked my email to see an email from my doctor where she finally posted my labwork from almost two weeks ago. My sedrate was 51 at the time. She talked about ordering more labs this week and if they had raised anymore taking action on that.

I had hoped my ileostomy would take away a lot of my problems, and in some ways it did, no more fistulas, but still it’s not a treatment really, so it shouldn’t bother me as much as it does that my inflammation is getting worse. Little sleep though makes me a bit more emotional and I got maybe a total of 4 hours of sleep last night.

Between the lack of energy and discomfort I have spent most the day feeling empty. I have no energy to do really anything, when I have a list a mile long of things I could be doing and should be doing. Instead I’m watching that 70s Show at 1am trying to rotate my shoulder well enough to pop it back into place from where I slept awkwardly and I think only subluxed it (I don’t see it sticking out abnormally so I assume it’s only a partial dislocation).

They say when it rains it pours. And right now the forecast in my life is cloudy with a chance of Crohn’s flares. (Cheesy, I know.)

image4 (19)
My laying against the couch awkwardly. 

 

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