Healthcare in the US understands quality of life issues better in the context of acute or end stage illness.

Chronic disease, not so much.

It’s very difficult using current tools for a patient with chronic diseases to accurately communicate what hurts. My most recent OT appointment is a great example of one reason.

I have been doing crafty things, and when I sit too long hunched over, I get a focal migraine. So my OT, Deanna did some body work, rather like a myofascial release. It worked great. First night I still had a migraine, but the second day, no migraine and the muscle tightness on the right side of my neck, back and shoulder was gone.

Guess what? I suddenly realized I have the EXACT same pain on the left side, but was completely unaware because the pain on the right side was more intense. Once that pain was gone, I had a whole ‘nother issue to deal with. An ongoing issue, since the little tumor/buggers press against nerves and muscles and cause charley horses in places I didn’t know they could occur, and my muscles are generally in a constant state of irritation and overreaction. Understandable given the estimate I have thousands of them.

When you’re dealing with a systemic disease and chronic pain, asking for a number to assign to your pain and a location is flat out useless. It’s faster and easier for me to tell you where it doesn’t hurt, and any number I give you is going to be a composite score of the three in my arthritic fingers and the 8 in my back and the 10 because I’ve got the mother of all migraines and so on.

The same goes for questions of ADLs (activities of daily living). Most patients with systemic disorders go decades without diagnosis, and by the time some brave doctor tries to sort them out they’re such a bundle of medical neglect that it’s not as simple as a few OT sessions and everything is better again. You may remediate one issue only to find 10 more crop up like some kind of medical Medusa.

The thing is, it gets very difficult to get doctors or worse, insurers to continue to prescribe treatment. The thing is, the fact that you’ve licked one issue and more have cropped up proves treatment works. Viewed in the context of the years of necessary treatment not given, that 1-3 years of intensive therapeutic intervention isn’t really all that expensive, it’s just that it’s been shuffled off until later. That ounce of prevention really is worth a pound of cure. That same health
care delivered preventively would have been cheaper and more effective.

Once you’re in the position of having a patient in need of such intensive rehabilitation, what do you do?

The answer is clear, I think, but I know from my support groups it’s rarely what happens. I’m persistent and will not stop asking to get my needs met until it happens. Most patients with chronic diseases struggle enough to stay alive and sane, skillfully navigating the needlessly complex medical and insurance waters is an unreasonable thing to ask of them.

So we can assume the cost to the patient, pain, fatigue, frustration, higher rates of suicide, depression, and hell, being bedridden is nobody’s idea of a good time. But what happens to a family when a parent has a chronic disease? Vacations? Not hardly. Play ball? No way, Jose. Board games? If Mom hasn’t zonked out from her pain meds, which are WAY cheaper than rehabilitation.

What if the patient in question was a volunteer? Firefighter? Doctor? Foster parent? Great neighbor? What happens to society when these people slowly retreat to the comfort of their bed and a bottle of pills? What happens, as is always the case with a systemic, progressive disease when neither the pills nor the bed provides any more comfort?

I have cried in frustration at Kaiser denying my access to rehab and pain meds, but being the stubborn cuss I am, I learned how to help myself. I still needed access to rehabilitation, which does for me that which no amount of my stubbornness can help me do for myself, but now I have tools at my disposal that increase the effectiveness of any given therapy, and allow me to feel some measure of control over my own body and how functional I am or how much pain I’m in. I’m no longer dependent on any doctor, any insurance company to remain marginally functional. There are times where self-care was the only care I had, and I’ve learned what to do with that.

But don’t think for a minute my world didn’t shrink considerably, and that a high price wasn’t paid by all.

Tomorrow we may be measuring me for progress. Last time I had MLD most of the benefit came from compression, and I don’t have that yet, but it will be interesting to see if the pump has made a significant difference, and hear if my OT has had any luck getting my doctor to write a prescription for the leg compression. Let’s hope.