A Writer's Life Interrupted #crohns #remicade #journey

First off, I'd like to thank my Facebook family for putting up with my notes yesterday. I used FB to keep track of what was happening to me to better jog my memory today. I could have used a notebook, but I wanted to track pictures as well. Hopefully no one blocked me due to my liberal use of FB space. *grin*

I had my daughter-in-law take a picture of my husband and I just before we left the house. If you look close, you can see my prednisone cheeks. Kinda like a chipmunk with a mouthful of nuts. #iwish Today I can start a better taper off the steroid so as the Remicade kicks in the Prednisone will be gone from my body.

Yay!

This flare of Crohn's is my worst so far though I haven't landed in the hospital yet for which I am grateful. While the nurses are wonderful, I get antsy chained to a bed. The thought of being hooked to an IV for a few hours really didn't daunt me. What did give me pause, was the Remicade itself. For those in the know, Remicade is called RatCrack because it is made from mouse protein. The thought of having mouse genes circulating through my system did give me pause. But, then I remembered how cherished my son's pet rats were. Especially Sparky, whose life ended when he fell out of my son's pocket and landed beneath the wheels of Ryan's bike. The funeral was nice, but a bit sad. I don't think the rat population will hold it against me. 

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Meet Brenda and Leslie. They gave me a guided tour of the facilities, let me pick which chair/bed I wanted to sit in, and made me feel all warm and comfy. Sierra Nevada Hospital should be proud of these two women. They made me feel safe, and that was awesome.

When I arrived I was in good humor, ready to face my challenges head on. My husband grabbed my hand and sat beside me and in a way, I think he was more worried than me. The first attempt to stick me in my hand, failed. It was my fault and something I need to remember for future visits. I have a really hard time staying hydrated and if I forget to drink water my blood pressure drops along with my temperature. Yesterday I had a hard time getting my temperature close to normal from 97, today I can't get it down from 99.5. I swear, my body has no idea how to regulate anything anymore.

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My littlest granddaughter, Princess Allison, made sure I took Doc McStuffins with me. She is convinced that Doc McStuffins will fix everything wrong with me. I thought because there are so many kids with Crohn's disease (I have no idea how many are on Remicade) sharing this little picture might bring a smile to someone who really needs one.

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I have to say that it wasn't long before I felt the effects of Remicade. My head swam just a little, I felt a little nauseous, and damn, did I get tired. All my intentions of blogging away went out the window. I could barely keep my head up.

I hear all those things are normal. After all, Remicade is chemotherapy drug and does everything you expect a drug like that to do.  Today I am better. Still a little under the weather, but much better than yesterday. I have heard from a few friends who told me it is normal to feel a bit under the weather after your first few infusions and that those side effects will go away. #Iamhopeful

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Hope is what Crohn's patients need. Some physicians are starting to believe that while Crohn's has its genetic side, it is set off by a bacteria called mycoobacterium avium subspecies paratuberculosis. It is a bacterium common in dairy products AND in Crohn's patients. Problem is, it is hard to eradicate.

My first step toward health is admitting I have a serious disease and admitting I am powerless to stop it. I cannot cure it with diet and I cannot cure it with 'right thinking'. I can help myself by eating right and keeping positive, but I cannot fix myself.
I really had plans to make this blog all lively and funny, but it just isn't there. I feel a little depressed though not in the emotional sense, the physical sense. Like I have RatCrack circulating in my veins. LOL

I have always been a nature lover. I love being outside in the trees among the deer and whatever happens to be creeping along. Yes, yes, even snakes. Salamanders are cool, too. So, my goal this week is to get back in touch with nature. I plan to walk if I can and if I can't, I'll just stand outside and take in my surroundings. I will try and remember just who is in control of my life and bow to the wisdom: Peace be to you, fear not.

Blessings to all!

Louann

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