Friday, October 21, 2016

Crohnie Quote Of The Day

"My life is a constant battle for my love of food and not wanting to be in pain"

Sunday, October 16, 2016

Remicade : Day 1546

This month was really non eventful as far as my infusion goes.  It was the lead up that had all the "excitement".  To start, my infusion was changed from my usual "home base" to one further away, which is fine I guess, but it screws with my routine the day of.  I forgot to pre order my meds so I was freaking out the pharmacy wouldn't be able to get it in in time.  I usually call it in about 4-5 days before just in case they have to get it in...but I forgot and ordered it the day before! Luckily they got it in about 3 hours before I had to leave, whew! I can't believe how much these meds cost and how it keeps rising in price!  Then, when I got to the infusion place, it was soooo busy I had to get my IV started in the waiting room.  The company that schedules everything, clearly overbooked or didn't take into consideration the time everyone's infusions take.  The nurses were great, but clearly were being run off their feet.  They kept apologizing but I told them not to worry about it, it obviously was not their fault.  Then after my dose of the juice, I left and forgot my cold bag and had to go back but needed to get some blood work done anyway to check my Remicade levels...but it was a very eventful Remicade 1546 day.  Hopefully my next wont be.

Thursday, October 6, 2016

Crohn's and the Changing Seasons

Ahhhhh, Fall.  The change in the air, change in the leaves, change in the weather and a change in the Crohn's !!
It is this time of year I both love AND hate.  For everything I mentioned above, yes, but I hate what it does to my Crohn's symptoms.  It's like there's a switch and once it was flipped to Fall, so was my Crohn's switch flipped.
I get more symptoms and problems this time of year than any other, except maybe winter, even though generally, I'm doing well.  I'll give you an example...
This past Monday was like any other Monday, get up, go to work, come home and have a quick dinner so I can take my son to soccer practice.  That was until I ate dinner.  Nothing out of the ordinary, generally because I'm going to be out and don't want to have to go to the bathroom, but after I ate, I laid on the couch and had a quick "shiver".  Again, nothing out of the ordinary.  BUT, that one shiver led to two, then more, then I couldn't stop.  I call them "the shakes" and I get them once in awhile, but have no idea why (and neither do my doctors).  I covered my self in a blanket, then two, then my son piled the freshly dried towels from the dryer on top of me to keep me warm.  Funny thing was, I didn't feel cold.  It got progressively worse...ever try texting while shaking...don't recommend it.  I was trying to text my sons coach that he wouldn't make it to practice and possible team photo's later that night.  I put myself to bed bringing all the blankets with me and added them to the comforter and blanket already on the bed.  The shaking got (and gets) so bad, my muscles and joints starts to ache and fever and headaches kick in.  I try to keep hydrated, but that's fun to watch.  What's worse is trying to urinate while you're "convulsing" hindsight, I probably should have sat down LOL, but what's done is done. 
Fast forward 4 hours later, yes, 4 hours, when I vomited and almost immediately the shaking stops.  I still shook a little, but 90% better than what I was.  Now I get to deal with joint pains in my knees, hips and jaw, muscle ache in my legs and arms and THE most painful headache.
I have been through this several times over the years and have learned that once I vomit, the symptoms seem to go away.  The closest my doctors have come to figuring it out is something call "rigors" which essentially a sudden attack of severe shaking, but have no idea why.
I've even gone to hospital once when it first happened years ago and even they couldn't figure out why. I like Fall??  My senses say YES! My body says, uhhhh...NOPE!