One of the skills at which I’ve learned to excel is justifying why I don’t need to deal with certain health needs I have. Actually, skill makes it sound so cut and dry -- if I may be immodest for a moment, I’ve elevated this type of avoidance to a highly refined art form. It took years of practice, but I’m now able to come up with a pretty decent list of reasons as to why I don’t need to do something I don’t want to do. Okay, so they’re not always the most solid reasons, but they work well enough to keep me from feeling guilty, and that’s all I need from them.
Problem is, because I’ve now succeeded in delaying certain needs so long that they can’t be put off any more, they’re all coming due at the same time. And it’s starting to freak me out.
At the top of the list is getting MRIs done to track the status of my spinal cord atrophy and tethering, as well as the status of the syrinx in my brainstem. Until recently, I’ve been diligent about having these scans done once every two years, a schedule set for me by my favorite neurosurgeon back in 1985 when MRIs first came onto the market.
But after I decided to refuse any further surgery and let my conditions progress naturally (even if it results in quadriplegia), I just didn’t see the point in going through the stress and pain MRIs cause me. After all, why should I shell out hundreds of dollars for a co-pay for diagnostic tests that won’t serve any purpose except to satisfy the curiosity of my doctors? And of course there’s the reason that sounds the most frivolous but is the most real for me: This will be the first time getting the scans done at our local hospital, and I’m scared of the unknowns -- especially how the patient the staff will be with someone whose body is so uncooperative.
Now, however, my rationale isn’t holding up to scrutiny as well as it once did. My doctors are growing more insistent about seeing if there is some objective evidence of the changes I’m experiencing, especially my ever increasing levels of pain and spasticity. And in all honest, I’ve got my own morbid curiosity about what’s going on, and if it appears that I am objectively growing worse.
So I’ve succumbed, and have a request into my neurologist for orders for the MRIs I need. I’m not sure how busy the machine is down here, but with any luck, I will be able to get them done this month.
On a different front, it seems my body may have made the decision that it’s time to find a pain specialist for me.
I’ve needed to find a pain doctor for ages. My current pain med regimen makes no sense at all -- it relies too heavily on short-acting pain meds. This leaves me playing catch up with pain when the drugs wear off every three hours, and necessitates me taking as many as 31 pain pills a day. Even worse, it leaves me nothing for break though pain because I’m already using the maximum doses of the short-acting drugs as a standard part of keeping my pain levels tolerable. If anyone had really taken the time to do a full review of my regimen, it would think they would have upped the dosage for the long-acting meds and leave the shorter acting drugs for the break though pain, as they were intended.
After having an abnormal liver function test about ten years ago, I became acutely aware of the potential for damage to my liver and kidneys taking so many meds could cause. Since that time, I’ve made certain that I know the maximum amount of each drug that can be taken before damage is caused, and which organs are affected by which drugs. More importantly, I am fanatical about making sure that I never exceed those amounts, even if I am having pain that goes off the scale. I’ve already got more than enough parts of my body that are giving out on me -- the last thing I need is to end up needing a kidney or liver transplant. I’m terrified by the thought of it.
Lat week, my worst fears appeared to be realized. I’d submitted a specimen for a urinalysis and culture after developing symptoms of another UTI. The results were good news, bad news: no infection (a triumph!) but there was an abnormally high amount of protein in the urine, which is a sign of kidney disease. Oh shit. Of course, one test should not a panic cause -- I’ve been retested and will get the results on Monday.
Regardless of the results, this is the red flag that is finally going to get me off my butt about getting to a pain specialist to see about ditching the oral meds in favor of a patch. I know several people who use the patches with great success, so I’m more than eager to try them. Easing the burden on my organs is the main goal, but I’d be lying if I said that I wasn’t also eager to ditch the handful of pill and three hour dosage schedule in exchange for a patch that can last for up to 72 hours.
So on Monday, when I visit my PCP, Dr. G, to get the results of the latest tests, I’ll be asking him if he’ll be the referring doctor for the pain specialist. I’m pretty certain he’ll have no problem with it. With any luck, he’ll even know who I should see.
Imagine that -- a PCP who actually coordinates care between specialists. If that happens, I’m hoping he’ll also refer me to a cardiologist because it will probably cause me to have a heart attack.