Wednesday, May 13, 2015

PJs all day

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!




1 comment:

  1. Hey girl just catching up on ur blog.....i wish mango could come to kits w u so we could ride together.


Update Dec 5th

Sorry I am a day late! This is from Carly yesterday :) Pic 1 was taken months ago and shows how big my hernia was. It was even bigger at...