Pain and privation

Being sick sucks because of the usual stuff like pain and weakness. But then there are the bureaucratic aspects of being sick that also suck -- and suck hard.

The clinic director at my doctor’s office has changed the narcotic pain management policy, capping the amount of narcotics each person can take at 180mg of morphine a day or equivalent. Since I take 180mg of morphine a day PLUS 60mg of hydrocodone (Vicodin), this will mean a significant decrease in the amount of pain medication I will be prescribed. Indeed I'm already feeling the affect of this new policy with a 15mg/day reduction in my Vicodin. It's only a small amount so I'm not suffering terribly, but it's enough so that I'm not sleeping as well. Which means that I'm back to sleeping over 12 hours a day but waking up feeling like I haven't slept at all.

I only found out about the new policy when Nurse K., who does my anticoagulation therapy, was reviewing my medications during my last INR check and we discovered a discrepancy between how much Vicodin I was taking (as that’s been the dose I’ve taken for well over a year now) and how much had been prescribed when Dr. H. wrote the refill a few days earlier. After consulting with Dr. H., she told me about the policy change and explained that he is now tapering me off the Vicodin. Of course, my pain level has not changed as a result of the new policy (hell if it worked that way, I’d have them change a few more policies!) and I’m at a loss to understand why they would fuck with an established pain management plan. Hopefully when I see Dr. H. on Friday there will be some way of asking for a review of my case so I can go back to the level of pain meds I was on in June.

A week after learning about the change in pain policy, I got a letter telling me my home care worker benefits are being cut because of the massive hole in the state budget. While I imagine my mom and adopted dad will be able to work out some plan to get the laundry done and clean the house (despite the fact that Mom works three jobs and Dad spends 8 hours a day doing heavy construction work in addition to multiple hours commuting), this does present a significant problem when it comes to eating and bathing. I’ve been getting assistance with meals through either a home care worker or Meals on Wheels (which is also being cut) for over five years and I’m much sicker now than I was five years ago. Considering that it often takes me well over 20 minutes just to make a bowl of cereal when I wake up in the afternoon, cooking on a regular basis is not particularly feasible.

So I've called my state representative and state senator. Talked with my case worker. Started writing an op/ed piece for my local newspaper. Considered seeing if friends in the local area might be willing to participate in a "casserole circle" and commit to providing one casserole a month (because, you know, it's not like they don't have busy lives and struggle to feed themselves healthy food on a regular basis too! ::end sarcasm::). And, of course, worried. About getting sicker. About being in more pain. About being even more isolated than I already am.

And then there was the whole XMRV saga, which has hit surreal levels over the last month. In mid-June there was a leak that Harvey Alter (doesn't he look like a nice man in his Wiki pic?), a scientist at the NIH, had replicated the Lombardi paper, finding XMRV in 80% of CFS patients. But just as CFS patients began to celebrate (yay, we do have a retrovirus!), we suddenly heard that the Department of Health and Human Services was withholding Alter's paper (which was already in galley proofs!), along with a CDC study that didn't find XMRV. When the CDC study was then published two days later, it sent conspiracy theorists into a frenzy. Especially when even the uber-conservative CFIDS Association said the CDC study was "a study designed to not detect XMRV using a hodge-podge sample set." Now the word is that Alter's paper is due to be published in a few weeks and that even after completing the additional testing requested, he found the same results. But until the paper is published, no one is really happy.

Normally the CDC finding wouldn't have bothered me. It was certainly the result we all expected in the ME/CFS community. I mean, one of the main authors said he didn't think they would find anything before they even started their study (scientific detachment at its finest!). And new research is always going to be up and down. Different groups are going to find different results as everyone tries to hammer out the scientific consensus.

But with everything else going on, it was hard. Is this what the rest of my life is going to be like? One bureaucrat deciding how much I will suffer, another dickhead at the CDC deciding how valid my suffering is, and the voters/bureaucrats of my state deciding whether they will provide someone to help me bathe and eat?

oOo

UPDATE: After seeing a few reports on Google News, I called my case worker today who confirmed that yes, it's looking very likely that tomorrow (Thursday) the state Emergency Board will be restoring the home care workers for Medicaid patients like me, along with a few other important programs (Meals on Wheels, Oregon Project Independence - both programs I used to be in) that were on the chopping block. "It sounds like a done deal...but I can't promise anything for sure. You'll probably get the paperwork before I do." So I'm breathing a bit easier tonight.

Other social services, however, were not so fortunate. Oregon Public Broadcasting radio news is reporting that cuts in funding for homeless shelters will continue as planned. My adopted dad spent much of the last six years homeless due to alcoholism (something I didn't blog about as I couldn't bear subjecting him to the moralistic ignorance of strangers) and it gave me a far too personal view of the special hell that is homelessness and addiction in America. While he just celebrated his one year sobriety date on the 11th and has a place to stay along with a job, I always know he's just one drink, injury or other chronic illness from the streets (seriously, I still get a slight nervous feeling when he doesn't call me back right away). Oregon already has the highest rate of homelessness per capita in the country and ranks 45th in funding for drug and alcohol treatment.

I tear up every time I think about. Like a sort of survivors guilt. If you're a single man, there have been almost no shelter options in Portland for years (it's literally a lottery for the few beds available). These new cuts are hitting families. Children. Sigh. Don't even get me started on the class issues going on here...

So, you know, very bittersweet.