Tuesday, August 30, 2016

Getting Doctored

I'm still in the early stages of evaluation by a host of specialists trying to get a handle on my condition(s). This will probably go on for at least another 6 months or so, possibly indefinitely, because there is no cure for what ails me, and keeping watch is the best they can do.

I've been getting lots of xrays and blood and urine tests to keep tabs on what is going on. A new test or follow up essentially every week for the time being. Certain markers show up regularly that indicate this or that condition, but nothing is severe enough to warrant alarm. Yesterday, the oncologist, for example, declared me non-cancerous for now, based on those tests which show the presence of a condition to be monitored (MGUS) but nothing else.

Major problem is rheumatoid arthritis and its effects which seem to be spreading and are only marginally under control. This is proving to be a challenge to say the least. I take prednisone which usually controls the pain and inflammation, but sometimes doesn't. I also take leflunomide, which doesn't seem to do anything. Previously, I was taking sulfozine, which also didn't seem to do anything. The rheumatologist is trying various medications, starting with the least expensive, to see what works. We haven't quite hit on anything except prednisone, which supposedly is dangerous over the long term even at the low dose I've been taking (10-15mg daily).

In addition to joint inflammation and pain, I experience extraordinary levels of fatigue regularly. RA is also suspected to be causing or worsening lung inflammation which contributes to fatigue in a vicious cycle, round and round.

Then there's COPD which is diagnosed independently of RA for which I need to see a pulmonologist. Next time for that is October when more tests are scheduled to see just how bad it is.

I was looking through some notes I kept as this journey continues, and it seems that I was doing better in May than I am now. I'd say there's been a slow-but-steady deterioration since then. The pain is mostly controlled, my range of motion is relatively good, but my overall ability is declining. Day-long activity is simply not possible any more. 20 minutes at a time is about the most I can manage and then I must rest for at least as long.  Naps are essential. I limp from sciatica from years ago but it's been getting worse. I get out of breath with almost any activity of more than a few minutes. Though I've tried not to, I've been gaining weight again -- a side effect of prednisone they say. That just makes things more difficult.

And so it goes. At one point I asked one of the doctors, don't remember which one, "What's going on? Why is this happening?" The answer: "You're getting old, and what's happening is more the consequence of old age and genetics than anything else. Compared to a lot of people, though, you're doing well. Just keep that in mind."

I do. Of course I have friends who say if I hadn't had such a wild youth, more'n likely I wouldn't be having all these issues in my dotage. It all comes from my bad living when time was. Then there are the others who are convinced it's all karma, results of things I did or didn't do in previous lives together with my own actions in this one...

Genetics (a form of karmic debt I suppose) enter into it, especially with regard to RA, because my sister had lupus, which is a related auto-immune condition. I assume the propensity came from our mother, though as far as I know, she didn't suffer from auto-immune conditions herself. She had thyroid issues and mental health issues, however, which may or may not have been related. She died of emphysema after a lifetime of smoking. She never quit.

I quit smoking 20 years ago, but I've been diagnosed with "mild" emphysema along with COPD, so I haven't escaped that consequence of smoking tobacco.

Both my sister and brother died of pulmonary embolism, both at a relatively young age: my brother at 32, my sister at 59. I'm not sure of exactly the cause of my brother's embolism, but the indications I got from his care givers and his death certificate are that he lapsed into a coma an was taken to the hospital where he died a few days later. The clot was probably due to his inactivity/paralysis.

On the other hand, my sister's embolism followed knee surgery that in turn followed injury in a prison/mental hospital where she worked. She died as a consequence of the injury and surgery. No doubt about it.

As for cancer... my father developed melanoma which he refused to have treated, and he died within a year, age 67. My mother's mother died of what I was told was stomach cancer, age 52. Her mother died at age 76 from uterine cancer. I've recently learned that from her death certificate. Previously, I didn't know what had happened to her, and from accounts by my sister, who claimed to have met her great grandmother when she was about 7 or 8 years old, I had always thought that Ida (my mother's grandmother) had died after 1940. Turned out, though, she died in 1935, and so my sister could not have met her as my sister was born in 1933 and wouldn't have remembered her if she did meet Ida -- which I strongly doubt. I wonder who she met who she thought was Ida...

My mother's father died in a railroad incident when he was 38; he didn't have time to develop killer diseases and conditions, I guess. As his mother died in 1918, I suspect it was from the Spanish flu. His father died in 1921, and it may have been from the same cause, though I don't know.

So those are some of the histories I'm dealing with. As I've noted before, a lot of my relatives died at a relatively young age, and right now, I'm older than most of them when they died -- wild youth or no.

This actually gives me pause. If I have lived longer, perhaps there is a reason.

On the other hand, I never thought I'd live past 30. So every year since then has been kind of a bonus, no?

Quien sabe...

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