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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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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The Latter Days

Every day of sickness can seem like a year. Sometimes every moment is so clear and precious. Others days every moment is a frustrating boundary or a dark cloud of pain. I've been having some of the latter days.

I know it is beyond my control, but I'm tired of not being able to be the loyal friend I think I should be. Everyone works so hard for me and gives, gives gives. Sometimes I think that if if I'm not working towards something (like returning a friend's phone call or finalizing plans with them) then everyone else must be having to work extra hard. Then I feel guilty and I feel angry at my disease. I feel like I'm constantly letting people down.

Living with a such a severe illnesses as mine is like living between the worlds. I know I've said this before, but I think it bears repeating here. When you're living “between the worlds” you feel like if you can't be a part of the lives of those around you and the world around you then you'll disappear. And yet the amount of effort it takes to communicate, to connect, seems gargantuan at times.

I've told my friends to always let me know what they're doing so that if I feel up to joining in I will. But more often than not I have to turn down invitations. Everytime I do that I feel like I've let them down, like I've given in to my disease. I know this isn't true, but it's how I feel. When I do get out to be with my friends I often end up pushing myself or covering up any pain I'm feeling. I don't want to let the disease win. I feel like if it shows, if it interferes, it wins. I also feel like I'll worry my friends too much if they see my true condition.

Yesterday, however, I decided that my friends wouldn't want me to be putting on some mask. I tried really hard to allow myself to be how I feel. It's hard, though. I cover up even at home. I'm tired of having to have people take care of me so, even if it kills me, I'll get up to do something myself. Or maybe I'll hide my symptoms until I really can't anymore.

I wish that people would come here to see me. It seems like my friends very rarely come over. I'm always coming to them. At home I feel like I have more permission to be sick. At home I can stay in bed, I can wear whatever and I have all my “supplies” at hand. I realize people want to get me out of the house and I appreciate that. I do like to get out of the house. But most of the time it's far more trouble and pain than it's worth.

Then I think that if people did come over I may be too sick to really respond to their conversation or to participate in what they're doing. Again, all they do is give and I have nothing! I feel so guilty and selfish because of it. I want everyone to realize that, although I may not respond to you with the feeling you expect it's not because I'm not interested. It's just that communication is so much work for me. Sometimes it's all I can do to send a simple text message.

And all of those times where I seem to disappear or fail to communicate—I haven't stopped thinking about all of you! If only you would come to me then maybe I could express how much I appreciate you better. I love it when people come to visit me!

It seems that I am doomed to fall short of others' expectations. Or are they my expectations? And I mustn't think that.

There will be a miracle.

I will get better.

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