That's what I just said to God.
After my thirtieth trip to the toilet.
"What the HELL, GOD? WHAT THE HELL?"
Sorry I've been gone for so long.
I've been really, really sick and in UBER-Level 9 Pain.
My last Remicade treatment didn't 'take'. I did not notice any improvement the first week after the infusion. And then the pain in my duodenal area actually got WORSE when it should have been GONE. I made the mistake of calling Dr. TFG, and asking to have another Remicade infusion, STAT, but Dr. TFG said, NO, Not on my watch, it's too early, which is really fucking funny, because HE is the guy who has ordered me into that lab or into the hospital STAT to have Remicade at week 1 or 2 on more than one occasion, and who promptly assumed I had a blockage and ordered some ridiculous x rays that I refuse to have done because I know I don't have a blockage as all of the plumbing is working just fine, a little too well actually.
And the other reason I haven't been blogging is that my body is literally falling apart, one absurd symptom at a time. I'll try really hard not to gross you out, but no promises. So today, after several days of thinking "eh, this is no big deal", the skin on my feet is literally falling OFF. No explanation other than CD. (I'm abbreviating here - Crohn's Disease - I totally hate those two words. UGH) It's not athlete's foot, it's not just dry skin, No, it's CD. This has happened to me before, all around my eyes, the skin just flaked off like dandruff and before I knew it, it was GONE. It's absurd, I know, but CD has been proven to sometimes affect your skin during a flare.
And my hair. Coming out in clumps. Everytime I wash it. Every single time. Starting to get painful, pus-filled sores on my scalp. No, I haven't changed anything. No new products, and I haven't gotten it colored because I'm worried the color will exacerbate the scalp sores. Again, THIS has happened before as well.
And my joints are crazy bad painful. Nothing new there.
And my freaking mouth. Ugh. So I wake up after my two hours of sleep last night and my mouth is fine. And then, over the course of the day, over the course of this 'flare' that I am enduring, my mouth goes haywire; the skin at the corners of my mouth starts peeling; the tissue behind my lips is bright red and raw; at the tip of my tongue, all of my taste buds are either fiery red or white, and enlarged and I can feel the pain from each individual taste bud and this has made my tongue so sore that my mouth is just hopelessly painful; there are sores all the way on the sides and back of my tongue starting near my last molar; the roof of my mouth and the insides of my cheek are red and raw and painful; and I almost threw up from the pain.
Today, I have been in the bathroom (and yes, after the fifth time I started counting) thirty-one times, with no sign of letting up. And no, I have not eaten anything that could be considered a cause. For supper last night we had london broil, green beans, baked waffle fries, and applesauce. Nothing spicy. Nothing too fibrous. Nothing that has ever made me sick before. Was up literally all night, slept from 414 am, to 632 am. Yup. That was it. And I thought I would just go back to sleep after both kids were gone, but noooooooo, Slave Driving BF decided to stay home today and was cracking the whip like mad. So I had to at least 'look' busy. ha! seriously, he is such a meanie. anyway, I worked on our taxes and this humongous pile of mail and moved everything onto my bed - the laptop, the eighty five pounds of paperwork, the tax stuff.... and sure enough I was in the bathroom every 15 minutes. Ugh. After hearing the toilet flush every 15 minutes like clockwork, BF came in and said "Everything okay?" And I said, "No, everything is NOT okay!....yada yada yada" and then after hearing me whine and complain he said, "when are you going to be better?" (HE IS THE ONE PERSON WHO KNOWS AS MUCH ABOUT THIS DISEASE AS I DO, AND WHO IS USUALLY THE ONE WHO IS THE MOST UNDERSTANDING AND LEAST JUDGMENTAL AND WHO I NEED TO BE ON MY SIDE ALWAYS!) and I told him that I was counting on next Wednesday's infusion to work, with all that I had in me, and he said, "Well, what are you going to do if it doesn't work?" and I said "It HAS to work. It just fucking HAS to." And he said, "I think you need a backup game plan." to which I responded, "okay, when they find a cure, I'll be sure you are the first person i call!" and then I promptly marched into my new 'office' for the day and went back to 'work'. UGH!
There's a whole lot more to talk about, but hell, I'm living it and to write about it feels like living it all over again and it just makes me mentally sick and tired when I need to be mentally fresh and strong. And I gotta tell you, if it weren't for the Methadone, I don't know how I would get through this. So I'd like to take a moment and thank God for Dr. Pain. Because she is awesome. She knows her stuff. And she's not afraid to try something new, or tweak something we've already tried, or increase this or decrease that. She listens intently, she ponders carefully, she acts swiftly and appropriately.
So this is where I've been.
In the daily hell on earth that is Crohn's Disease.
What the Hell, God?
WHAT THE HELL??????