I woke up this morning (Saturday) earlier than I thought I should, and I could feel the pain coming on. Again. It's Saturday, so it must be the start of a flare. It's been that way for more than a month.
I'm not happy about it. I've decided to keep more of a record about it here than I otherwise would, simply because things seem to be going haywire, and I've never been good at record-keeping of personal events. I can narrate them after the fact, but while this or that is taking place, I usually don't have a great deal to say about it.
But RA has put me in a state of wonderment and bewilderment. "What is going on?" I keep asking the gods and goddesses. A smirk perhaps plays on their lips and that is about all I can find out from them. They know. They're not telling.
For a year or more I didn't have flares. What would happen is that from time to time, pain would affect one or more joints -- not general joint pain -- I would tell the doctor and she would change my medication and the pain would abate for a varying length of time (generally months) before the sequence would repeat. So I've had several different medication routines, all of which have controlled the pain of RA more or less well -- until now.
I take my usual medication -- with the addition of pain pills that I've had on hand for years -- and it doesn't necessarily control the pain at all. Maybe it will, maybe it won't. You never know.
The doctor wants me on rituxan, a cancer drug that is used for RA when other biologics fail. That's the case with me, apparently. The doctor has gone through the standard list -- with the exception of methotrexate which she has been unwilling to prescribe 1) because of nasty side effects, 2) because of RA induced interstitial lung disease which she says the methotrexate makes worse.
Given that situation, she feels she has no choice at this point but to put me on IV treatment that could -- she says -- cause the RA to go into remission. Well, that would be nice.
There's some kind of hangup with the insurance (again.) Doctor recommended rituxan IV infusion a month ago when the current sequence of flares started. Exactly how to arrange that was left up to a nurse who is adept at maneuvering through the twists and turns of the insurance bureaucracy (prior authorization was required, for example, and getting that could take some doing.) Anyway, she thought she had it all arranged, and I was to get in touch with the financial aid person at the infusion center to see what the costs would be (it's very expensive at rack rates, though insurance apparently pays for all but a couple of hundred dollars. How much insurance pays depends on coverage limits and household income. Apparently.)
I got in touch, "touching base" as they say, and then I heard nothing. Stephanie, the nurse, said there was a hangup and I would have to see the doctor again for an evaluation before prior authorization would be granted, and she made me an appointment a couple of weeks hence.
In the meantime, I received a letter of authorization in the mail the week of my appointment. Got the letter on Monday, the appointment was on Thursday. After the evaluation -- yes, I need treatment because of recurring flares that are at best partially controlled by current medications, at worst are not controlled at all -- Stephanie called the person over at the infusion center, and a very interesting discussion ensued.
Stephanie told her that I had just finished the office visit with my doctor and that I had received an authorization letter a few days previously. What were we to do now?
I shouldn't have received authorization, said the infusion center person (Katrina), as she had personally withdrawn authorization. The letter I received was therefore not valid.
She had withdrawn authorization because she said I needed to be evaluated by a doctor (my own rheumatologist would do) before treatment could be authorized. The earlier recommendation was not sufficient. Needed specific indications that infusion treatment was necessary -- such as the failure of previous rounds of biologics.
OK. So that was done. Now what?
Once Katrina had a chance to review the new evaluation, authorization could go forward, and -- as far as I could make out -- the infusion center would contact me for an appointment. Shouldn't take long.
Or so Katrina seemed to say. You never really know what they're saying when they're talking insurance bureaucracy. It took months and months to get authorization for out of network treatment in Denver (which I likely will not go to) and almost as long to get authorization for out of network treatment in Albuquerque at UNM, and then another several months wait for an appointment (this is for lung disease treatment). So.
Well, a week goes by. I report to the doctor that I am continuing to have flares and the pain is sometimes debilitating when no medication seems to work. She wanted to know what was happening with the infusion center. I told her I didn't know as no one had contacted me. She said she wanted me treated ASAP and had her nurse (not Stephanie) call to find out what was going on.
She was told that the infusion center would contact me "shortly" to make an appointment.
Well, that was Thursday.
No contact yet. Of course I learned long ago that "soon" or "shortly" could be months. It's already been a month. It could be months more.
Well, what else can you do?
Alternative treatments are looking more and more promising. Trouble is, during the initial period prior to being diagnosed with RA, I tried a number of alternatives, and not only did they not work, some made the pain worse -- Stop Pain for example doubled or tripled the pain on the meter, for example.
Now I'm studying Hulda Clark's protocols for RA treatment (liver and kidney flush, zapping, major lifestyle and dietary changes) and find it somewhat amusing because what she says is that this will work "temporarily" and the way she describes it "working" is essentially the course RA pain flares take -- whether or not you're being treated with standard medicine or alternatives or nothing at all. You have generalized joint pain which evolves into specific joint (or pair of joint) pains which can travel from joint to joint over the course of the flare, and it will typically last for about five to seven days before fading, sometimes even disappearing, until it happens again, which can be anywhere from a week to a month (sometimes more) later. That's how it works. Standard medications -- at least in my case -- were able to control the pain and flare outbreaks relatively well for about a year. Now, I think the doctor believes she's almost out of options as most of the standard medications in the pharmacopoeia have been tried and have ultimately failed. Time for the big guns.
Hulda Clark's protocols, as far as I can tell, actually have no effect on the course of RA at all. Because they are rather complicated, however, and they involve peripheral issues (such as searching for hard-to-get ingredients, preparing and consuming cleansing formulae on a strict schedule, completely changing lifestyle and diet, etc.using a proprietary electronic device -- Zapper -- to kill internal parasites and bacteria) they might be serving in the place of placebos, and from that perspective, they may actually help some patients by diverting their attention from the pain they're experiencing.
Because I can have a severe allergic reaction to walnuts and coconut, two of her required cleansing ingredients, I can't do the organ cleansing she recommends. But there's no indication that even if I could do it, it would have any effect on RA and the pain involved.
That remains the same no matter what you do.
A lot of it is mind control.
Which I don't discount. It can work. For a while, anyway.
But it seems to me that for Hulda and her devotees, the real objective is cultish, not corrective. Basically, by doing all these rituals and observing certain protocols and systematic lifestyle changes, you are put in charge of your condition. It can't really change or affect the condition, but because it is no longer something outside you, but is now inside, you will have a feeling of control over it that you didn't have before. Any failure of the protocols to work is effectively your own fault ("you aren't doing it right") and it's up to you to follow the protocols more strictly, among other things.
Because others are attempting to do the same thing, you have a community of strivers, which can be a benefit compared to the lonely struggle someone attempting the medical route (and failing) might have to endure.
Meanwhile, on the plus side, I've set out trays and trays of Cherokee Purple tomato seedlings. It's a constant struggle to keep them alive and healthy because it is still early enough in the season that overnight freezes are possible (for example tonight) and our feral cat colony is fascinated with these plants and some of its members have taken every opportunity to overturn the trays and destroy the seedings. We've lost surprisingly few, though. So that's good. On the other hand, at our altitude, it is difficult grow tomatoes from seed, so we'll see how this first effort goes. I planted the first group of seeds on March 18; the seedlings from that planting are OK, but they are still very small, almost stunted. Ones I planted after -- at the end of March -- are doing better, are larger, and they appear to be healthier. Interesting.
Learn something new every day.