Break Please?

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.

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Rochester Flowers

The flowers in Rochester are in full bloom. There are different flowers than the ones I see each summer in Lincoln. I’m rather surprised at the Rochester flowers’ hardiness. We’ve had days of hot, humid weather. The kind where even the outdoorsy people are seeking the solace of dark, air-conditioned rooms. The flowers, however, seem unaffected.
Mom and I went to the Mall of America today. I was thinking that the distraction and exercise would do me good since I’ve basically been lying in bed the last couple of days with the overwhelming fatigue, nausea, aches, chills and sweats. But, of course, I got caught up in things at the mall and ended up so exhausted (and hot!) that I gave myself a migraine, plus extra pain. I seriously need to figure out how to pace myself. I might have done a bit better if I had gotten in a good meditation this morning…
Also, I’m supposed to only be taking two doses of Imitrex a week. Period. No ifs, ands or buts. And since my neurology appointment I’ve had two doses. I don’t have the rain to blame anymore so I have to break the chain, otherwise I’ll keep getting daily migraines because my brain expects the drug.
Last night I was thinking about how central physical pain has been in my life and how I still have fears and expectations about it. As in, expecting that if I have to sit in the sun all day I’ll get a migraine. And then that thought or expectation generates fear of the pain to come. Some of my expectations are true, some can probably be overcome. It will take a lot of self-discipline, though. Meditation helps, too because then I learn to disassociate from the pain. I notice it, but I don’t have to be identified with it. This is a crucial journey for me as pain has been a major factor in my life since I was little and pain will most likely continue to be a part of my life until I leave this body.
Tomorrow are my last appointments unless the doctor decides to do another biopsy. This depends on how yesterday’s blood work looks. I hope we can go home, at least for awhile. I miss everyone and everything, Mom even more and I hope we can go for her sake. Also for Ginny who is very lonely. I got her some things at the mall, though they can’t really soothe my guilt over causing so much stress these past five weeks. Daily I must learn to forgive myself for things I cannot help.
I’ve been thinking a lot about what I should do with my life now, provided I become relatively healthy. It stresses me out because there are so many different things I want to pursue but, not having experienced them fully out in the “real world” I don’t know what would be the perfect fit. I know, then, that it’s all in God’s hands and I just need to follow my heart day by day. The right opportunities will be presented to me when I am ready.
But then think of all the projects I already have going or need to get done! Day by day, I tell myself. Life is very different now and it will continue to change. I must be gentle with myself in this time of change and adjustment. Day by day, moment by moment.

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The Month of Health

From teh PSC Partners Seeking a Cure discussion board:

So, by some miracle, I woke up one morning about a month ago and felt great. Yeah, I had my moments and still needed some pain med. But let me tell you, I was out shopping and driving. I bought high heels and lacy underwear and told myself I didn't have to face a life of Ugg boots and hospital-appropriate panties.

I wore makeup and did my hair. I hung out with friends. I cooked food. I ATE the food. I danced and laughed. My MELD went down to an 11....which wasn't so great, but my health was showing on paper, anyway.

I wanted to share this because, although this board is a good place to come when you need help, it's also a place to come and tell people, "Hey, things will be okay and I'm living proof of that!"

For the past 4-7 days (can't keep track) I've been really starting to go downhill. Back to where I started. It's hard and sometimes that brief breath of healthy air seems like a curse. Like life was taunting me or something. But deep down I know that's not true. I came back with new lessons, a new perspective and some cute new outfits. Before this happened I was pretty sure I wasn't going to live that much longer. I'd even written down some funeral plans and asked my dad to come to Lincoln so I could see him one more time. So believe me when I say, if a one-month-of-miracle-health can happen to me, it can happen to you.

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Painful Thoughts

I’ve learned that there’s a difference between being in pain at home when you’re a comfortable temperature, in your bed, surrounded by those you care about and by familiarity and being in pain in building which is big with high ceilings, kept at a temperature appropriate for storing your perishable goods and filled with architecturally modern, but very uncomfortable, furniture (namely, the hospital plaza with all the doctor’s offices). It makes no difference that warm blankets, beds, small, dark rooms and pain meds are a room away.

Unfortunately, I have two things: pride and chronic pain. I’m too proud to always go around in a wheelchair (and will tell myself I need the exercise until I absolutely collapse). I’m especially too proud to be pushed in a wheelchair by a stranger (and most likely a retired old man stranger) who will ask me all sorts of questions all of which the answer to will be, "I’m too sick to do that." And, frankly, the whole point of the wheelchair is to keep me from experiencing more pain and exhaustion. But do you have any idea how much effort it takes to carry on these conversations retired old man wheelchair-pushing strangers insist on having with a young gal like myself?

Second thing: chronic pain. Doctors don’t like to deal with people who have chronic pain. And when you’re already on a high dose of the world’s most potent opiod, what more is there for them to do anyway? Besides give you the IV version (God forbid!). Doctor’s are always trying to find something else to blame the pain on, too. And I’ve learned that the pain scale is crap. I could say my pain is a 12 on the pain scale and I doubt my doctor would bat an eyelash. Now don’t get me wrong, my doc is doing the best he can and I know it. The poor soul has no idea what it’s like to be me and he doesn’t want to know. And I don’t blame him. He, along with most of my other doctors, is scared of a case like mine. He can’t cure me and one little wrong step on his part could mean severe consequences. I mean, autoimmune disease, plus, on-the-transplant-list, plus chronic pain equals hot potato. No one wants to touch it. Except those really super brainy doctors who come from India. God bless ‘em.

Also, don’t get me wrong and think I love my pain meds or something. I hate having to take narcotics. I mean, I’m a mostly raw vegan. I don’t even put most dairy products into my body. I wish microwaves would die. I get super excited about movies like No Impact Man, Fuel, and Food Inc. Why would I put something as toxic as hydromorphone (Dilauded) or Oxycontin into my body on a daily basis? Because otherwise there wouldn’t be me. I would be dead. Or like Neville Longbottom’s parents (from Harry Potter). Each day would be another level of hell. With these drugs I can cuddle my rats, read books, make origami and spend time with my family. I choose that, even at the expense of putting something horrible into my body.

Even with as much medication as I take daily for pain, I’m usually trying every other avenue first. I’ll try a hot bath, meditation, deep breathing, prayer, etc. If I can get by without the pain med, by golly I will. I don’t want to get into the withdrawal cycle. Many times a good nap and some deep breathing have kept me from having to resort to super narcotics. And even if I do have to take the pain pills I continue my natural methods.

If you were to walk into my room while I was visiting the ER for pain reasons you would hear soft music or Gamma waves playing through some small speakers hooked up to my iPod. The TV would be turned on to the hospitals relaxation channel which shows calm scenes from nature (my favorite are the dolphins). I will usually be keeping as warm as possible and taking deep breaths if I can. After my pain is controlled I may look at pictures of angels, read a soothing book, meditate or just plain conk out.

Anyway, what I’m trying to say is I’m not some sort of narcotics purist and I’m not an addict. However, I will admit that I’m afraid of pain despite its constant presence in my life. So I do choose to use narcotics both for quality of life and because I’m a wuss.

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