Break Please?

>> Tuesday, August 16, 2011

No sleep tonight (again). When do I get a break? When will my body regulate its temperature, have less pain and discomfort, look healthier? When will I get free enough from the fatigue to have a somewhat normal day? When will I wake up without nausea swirling, threatening in my stomach? If God bestows these gifts to most people, why not me? Will this pass or will I, despite all efforts, live and die like this? I feel death in me, waiting, watching for me to lower my defenses and for a physical opportunity. I thought the transplant would mean years more of life, most of it reasonable healthy. Now I’m not so sure. I’m determined to keep my will to live strong and to enjoy the beauty in life. Yet still, in the background, I prepare myself for death. Few will understand this.


Rayne August 18, 2011 at 7:42 AM  

When I had to have the hysterectomy the doctor told me it would be 4 to 6 months at least before I would feel like myself again. She told me that my body was used to a certain rhythm and that removing a major organ would upset it for awhile and throw everything out of whack. (You not only had a major organ removed, one that your body was used to compensating for, but you stuck a new major organ back in there. Your body is probably a bit confused right now I am thinking... :) )
Plus major surgery means a lot of healing. Hard work for a body that is healthy to begin with never mind one that has been dealing with a serious chronic illness for years and years. She was right, it was a good 8 months before I realized that I was coming back to myself.
This past week when I had the thyroid removed I was expecting a quick and easy recovery. I mean, it's taking something out that didn't belong there. Surely removing the tumor and only part of my thyroid wouldn't upset my body so badly? I was wrong. Granted, it was much more invasive than he had originally thought and some other stuff happened, but that's not the important part. The thing is, my body is super pissed off and the Crohn's is screaming in rage. I am really surprised, somewhere I had it in my head that I would feel fine.
Not even close.
They had to leave one of the tumors in, it was in a bad place. They are going to monitor it and if it grows or changes they will take it out. I sit feeling weak and tired and sick and anxious and freaked out and calm and fearful and brave and nauseous and dealing with sweats and chills and shaky hands and pissed off at the universe and grateful that things turned out better than expected and all confused and mashed up and realizing that now my body has switched tracks there is a good chance I am going to die sooner than later and feeling angry and ambiguous about it at the same time...
What I am trying to say is that I understand.
I've had to remind myself about the mind/body/spirit connection repeatedly and recognize that I am probably dealing with anxiety and depression more so than usual because my body is out of whack.
I wish I could give you a magic word that would give you peace for just a bit.
What I can tell you is wait for those precious moments of feeling 'not too bad' and imprint them on you brain and soul and reach for those memories with joy when things are getting bad. Remind your body what feeling good feels like, as if you are opening a door and showing a magic room to someone. Maybe it will get the hint.
I tend to think of my body as a badly misbehaving child that needs to be rewarded for good behavior.
I am really hoping this came off as encouraging and helpful and not all me-me-me...

Becca August 18, 2011 at 9:39 AM  

It is. And I know it will take some time before I feel like myself again. And on the whole I DO feel a lot better. It's just discouraging when I feel just as bad as I did before. This is the worst I've felt since the transplant. As much as I wish none of that crap was happening to you, Rayne, I'm glad to know there's someone else out there who understands and shares the pain. It's like one of the Buddhist precepts, "There is suffering". Not, "There is MY suffering", but rather that all of humanity suffers and that there are many who suffer in much the same way as a certain individual. So we're not alone or "special" in our pain, we're part of a family. I find that helps me have more compassion and acceptance for my current condition (whatever it may be) and for others.
Thanks for taking the time to write. It means so much.

Anonymous August 19, 2011 at 9:24 AM  

I remember thinking and feeling post transplant was this worth it. I remember feeling so bad worst than I ever did living 13 yrs with psc. 15 month out now I can say yes and with minor bone pain cause by the prograf. Don't give up . Speak healing . I fought cmv for 9 months post transplant and became resistant. I almost gave up bc I was running out of treatment options. Psalms 91 For he will command his angels concerning you to guard you in all your ways became a scripture I would use to remind me of God's promises. Don't give up

Becca August 19, 2011 at 3:59 PM  

Thank you for this. It makes me feel better that I'm not alone.

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