As Good as it Gets

Yesterday I went to the Brown Cancer Center fro my usual once-every-two-weeks visit to get a refill of B neg and my monthly chat with the doctor. I had been feeling pretty awful for the past few days, moreso than I had in a while, because my blood had run lower due to the procrit experiment. I saw my Dr., and we both agreed that the procrit shots didn't seem to be having any effect on my blood so we're discontinuing them. About five minutes into the conversation it suddenly dawned on me why my doctor had been so reluctant to give me any answers or say for certain that my anemia was directly related to my kidney disease. I realized at that moment that my Dr. and I had been looking at my aliment in completely different ways. I was looking at it as a tremendous annoyance, that was keeping me from jumping in with both barrels loaded into my sparkling new paralegal career and eventually have all of the things I'd daydreamed about for several years now 'once all this was over'.

It became clear over the course of the conversation that although he is reluctant to come right out and say it, my Dr. does not think my condition will ever improve. He has hinted at this to me before with his actions, but it wasn't until yesterday, that I was finally listening. The dragging out of treatment, the long months of screwing around with the procrit shots, the reluctance to give me a bone marrow biopsy....it finally became clear to me why all of this things were taking so damn long. Because he doesn't think there's any need to hurry. There's likely not anything else he can do.

I asked him flat out, "Am I going to continually get worse until I die?". He said no, that my condition likely won't get any worse as long as I'm getting regular blood infusions. Well, I suppose that's at least one thing to be thankful for. Jesus, at least there's a bottom to this torment. So I'm not going to die.

As Good as it Gets

Yesterday I went to the Brown Cancer Center fro my usual once-every-two-weeks visit to get a refill of B neg and my monthly chat with the doctor. I had been feeling pretty awful for the past few days, moreso than I had in a while, because my blood had run lower due to the procrit experiment. I saw my Dr., and we both agreed that the procrit shots didn't seem to be having any effect on my blood so we're discontinuing them. About five minutes into the conversation it suddenly dawned on me why my doctor had been so reluctant to give me any answers or say for certain that my anemia was directly related to my kidney disease. I realized at that moment that my Dr. and I had been looking at my aliment in completely different ways. I was looking at it as a tremendous annoyance, that was keeping me from jumping in with both barrels loaded into my sparkling new paralegal career and eventually have all of the things I'd daydreamed about for several years now 'once all this was over'.

It became clear over the course of the conversation that although he is reluctant to come right out and say it, my Dr. does not think my condition will ever improve. He has hinted at this to me before with his actions, but it wasn't until yesterday, that I was finally listening. The dragging out of treatment, the long months of screwing around with the procrit shots, the reluctance to give me a bone marrow biopsy....it finally became clear to me why all of this things were taking so damn long. Because he doesn't think there's any need to hurry. There's likely not anything else he can do.

I asked him flat out, "Am I going to continually get worse until I die?". He said no, that my condition likely won't get any worse as long as I'm getting regular blood infusions. Well, I suppose that's at least one thing to be thankful for. Jesus, at least there's a bottom to this torment. So I'm not going to die. But I'm not really going to live, either. That's a hard pill to swallow.

Worries continually flash across my mind. I still live in terror of the SSA, and the thought of another visit to the chiropractor to determine my benefits eligibility fills me with dread. The political climate in this country is getting worse and worse every day, people are getting colder and more rash about yanking out social programs in ill-advised efforts to grow the economy. How long will it be before they gut my insurance and I'm left to die? A decade? Three years? I can't work now. That infuriates me. I wanted to be off disability in a few years so I could avoid this shit. Working with Jaime and Greg was a happy something to look forward to, now that may not happen.

I worry about living space. Brian and Katie have agreed to let me live off in a little mini-apt in the place they are going to get for themselves in a few months, but the thought was always that in a few years when I'm well and working I would finally be off to get a place of my own. I don't think they'd kick me out heartlessly, but they surely can't be looking forward to taking care of a friend when they have a life together to look forward to. Their jobs might change, they may move...I don't know how switching hospitals will go, there may be places I literally can't live, because of inadequate access to medical care. I had talked to Sparky about possibly moving up there a few months ago, but after asking her questions about the nearby hospital, I determined it was impossible.

I also asked my Dr. if I was the only person at the Cancer Center with anemia, surely my case can't be unique. "You are the only person I've ever seen with Alport Syndrome," he replied.

There's what-ifs, like always. While I was sitting in the infusion chair later and complaining about my new insights, a nurse assured me that even if they can't cure it now, they might be able to soon or sometime in the future. "I've been here fifteen years and I've seen things I never thought I'd see possible. They might come up with a pill or something next year that fixes you, you don't know." I know that part of the lack of knowledge about what to do in my case is due to the lack of knowledge about the disease itself. The only other person I've even met with Alport Syndrome is my sister, and she has almost entirely different symptoms than I. I will need to talk with more people. It might help, it might not.

I'm finally getting the second bone marrow biopsy next Tuesday. It might give me some new answers, but the general feeling I'm getting is that it might give me a name, or some bit of knowledge about to call my disorders, but it's prolly not going to lead to a cure.

I really fucking hate being disabled.


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