Another sleepless Wednesday night. And when I say sleepless, I mean not one minute of sleep. Zero winks. Dexamethasone is definitely the culprit. I’m dragging today but it will probably be worse tomorrow. Luckily today I didn’t have a long commute as I was in the office for a bit then working from home. But it’s getting old. In a couple weeks I’ll have a 3.5 hour commute to clinic on a Thursday so I hope I sleep the night before.
This wasn’t an Aranesp week so I just got the Velcade shot. It still takes about an hour though. We have to wait on the lab results, and then we have to wait for pharmacy to place the order. No big deal. I keep my Wednesday afternoons clear.
As she always does, the nurse asked me if there had been any changes in my medications, so I told her about my inadvertently not taking the BP med, and I also had the pleasure of telling her that I was no longer on the prednisone.
There was a younger woman sitting to my left, and she said, “Lucky you. That stuff is the worst.” So we got to talking and bitching about prednisone and medical care and the like. She has Crohn’s disease, which, if you’re not familiar, is an autoimmune disease that affects the digestive tract. It’s chronic with no cure although some people do go into remission. She said she had the type that doesn’t go into remission, and while she deals with it daily, at times she has pretty severe flair ups.
Then she said she lives two and half hours away from Albuquerque, and there’s no quality care in the boonies. “Where do you live?” I asked her. “Oh you’ve probably never heard of it. It’s a really small town called Ramah.” “Oh sure, I know Ramah. I work at Pine Hill clinic.” Pine Hill is a Navajo reservation and Ramah is a small village near there. And by small, I mean population of about 400. [Many of the people who work at Pine Hill clinic live in Ramah. From all I’ve heard, they’ve developed a very nice community out there; people really look out for one another.] She was shocked that I knew where it was and that I worked out there. Turns out her husband works out in Pine Hill as well, although I don’t know him. I’ll have to look for him next time I’m there.
This happened to me once before. My friend and I were in New Orleans for Mardi Gras, and we were talking to this woman who was kind of a granola-hippie type. She was dressed up in a costume, maybe like a clown? I can’t remember. It was many years ago. But it’s New Orleans and Mardi Gras. Lots of people dress up. I mentioned I was from New Mexico, and she said, “Oh yes, there is a very spiritual place out there I’m sure you’ve never heard of. It’s called Acoma.” And she really enunciated it: “ACK-oh-muh.” “Yeah I work at the clinic there.” She too was shocked. It was pretty funny.
But back to the woman with Crohn’s. As much as I bitch about the quality of health care here in Albuquerque, I can’t imagine being in such a remote location with such a serious disease. And such a PAINFUL disease. I have to say, if I haven’t already, I am so grateful that in dealing with all of this, I have had very little pain. I’ve been hella uncomfortable but not in pain. She said she’s gone to the (non-Indian) hospital in Gallup and that she will never go back there. She was in the hospital for five days in excruciating pain and never saw a doctor because no one had any experience with Crohn’s. They finally shipped her off to Albuquerque. She’s also been seen at the hospital in Grants with a similar outcome.
God. Don’t get a chronic illness. But if you do, make sure you live in a major metropolitan city. I just don’t know how you plan your life around that long of a drive and a hospital stay so far from home.
Despite all her medical issues, she was in pretty good spirits. I rarely talk to anyone there other than the nurses (rarely = never), so it was nice to have a conversation with someone. She said she’s there about every two months so it’s unlikely our paths will cross again but maybe I’ll run into her husband out in Pine Hill.
My blood pressure was good yesterday (or at least better). I believe it was 127/77. However, my creatinine increased. The lowest it’s been in the past couple of months is 1.4; the high end of normal is 1.2. But since then it’s been slowly increasing to 1.6 then 1.8, and yesterday it was 1.9. That of course affects my GFR, which is currently at 34—but at least it’s holding steady.
I emailed the PA doc today to see if she thought I should decrease the lisinopril to 20 mg from the 40 I’m taking now because lisinopril is known to increase the creatinine levels. But she said not yet; she wants to track it for a while longer and see where it goes.
Next week… it’s time for the giant jug o’ pee again! My monthly 24-hour urine test. Fun! I wonder if she’ll actually get the test results this time. I mean, it could happen. But I’m not going to hold my breath.
Also, this was a story I stumbled upon while looking for a picture: “Disabled Man Awarded $8K After Enduring ‘It’s a Small World’ Song While Trapped 30 Minutes on Broken Ride.” I mean, good work if you can get it.