I was in my PJ's all day today. In the past being in my PJ's meant I was home relaxing with my feet up. Unfortunately today was not that kind of day. I had a flare or what I call an episode. Flare makes me invision myself abandoned at sea....or a dramatic dancer...and this is so far from that! Only reason I was in my PJ's is because I could hardly stand in order to change.
Crohn's disease is almost worse than my cancer. It's going to be with me for the rest of my life & turns on with no notice. Of course it's not terminal like my cancer was and still could be, but it hurts like radiation did, a pain that makes you cry. Some days I'm riding high and then I have days like today where I'm low.
As much as I'm angry I'm also intrigued. Seems everyday I read something via my support group or I get on google. Usually I steer clear of Dr. Google but for Crohn's I visit him/her often. Fatigue seems to bother most people no matter their severity of the disease and this rings true for me. Doesn't mean I sleep all day, just means when I'm out & about it usually wears me out and takes me a while to get back. I was out most of Monday and didn't get my proper foods so this could perhaps be a contributing factor. However I've got to do things, I can't become a hermit. It's my price it seems.
Like I said I'm intrigued.... How can I control this, even if just a little. The dietician I met with last week gave me some new ideas. Nothing different than Dr Google might have come up with, but she was a live real person and talking with someone who's there to understand really helps. I felt so much better when I left my hour session, she might as well been a psychologist. She gave me some new ideas for food as my usual things have become boring and I'm to eat 6 small meals a day. Large meals serve me no good so please don't ask me to an all you can eat buffett.
My weight has been down & up throughout my illness but according to my last Dr visit I've lost 11 lbs. I don't really feel it but it must have happened. I had her check twice, as I lost it all in 3 weeks which is a bit drastic. Extreme weight loss can be a negative sign, however weight loss with proper diet & exercise is fine. Mango and I will go for a 3rd ride this week, maybe even a 4th. A lot of you asked how I've managed on the bike and so far so good. It's a fairly padded seat and a cruiser style 7 speed so I'm not hunched over. I'll post a Mango selfie next time she's out.
It's now 3:30am on Wednesday and I'm finally feeling like I can sleep. Simba's already sleeping on the couch as I think he hates me keeping him up...the nerve! Goodnight, good morning, or good evening...whenever you're reading this! Thanks for reading and for taking a ride with me. Oh & since I'm off to bed so late hold all calls to the afternoon!
XOXO
#carly2conquercancer
C
Hey, I'm Carly! A 2x stage 3 Vulvar cancer survivor, an extremely rare type of gynaecological cancer. Colostomy surgery and more saved my life! You can follow me on instagram at ostomate_and_the _city or my personal carlyallen75 to see what I’m up to!
Wednesday, May 13, 2015
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Hello everyone. I wanted to do a final entry and inform you of the new way I'll be blogging moving forward. I just realized that today...
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Hello everyone. I wanted to do a final entry and inform you of the new way I'll be blogging moving forward. I just realized that today...
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I’ve always enjoyed a good day of shopping. As a teenager my friends and I would catch the bus and head downtown. We lived in relatively the...
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I remember drawing rainbows as a child. All the coloured markers laying on the table and some of them even had scents. Red was strawberry, ...
Hey girl just catching up on ur blog.....i wish mango could come to kits w u so we could ride together.
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