RA (Rheumatoid Arthritis) Sucks

Well, I'm Back....

So, I've had a rough couple of months. I won't go into all the crap that has surfaced (because it IS crap, and no one should should be made to smell, see, or step in crap if it can possibly be avoided. I mean, think of all those intricate patterns on the bottoms of our sneakers....).

I will, however, detail an aggravating RA-related issue that finally was resolved as of yesterday.

When last I saw my RD, a few weeks ago (for general and post-surgical follow-up), I had complained of more pain than usual. Consequently, she wanted me to have an ultrasound done at the great-and-highly-vaunted Northwestern Memorial Hospital here in Chi-town to determine how well the Enbrel was working. My RD frequently sends patients to Northwestern for US's, since "they're the best and they know what they're doing.")

(Side note: I'd been off the Enbrel for the surgery, and it was possible that I still hadn't reached a therapeutic level.)

Now, it's important to remember: I've had two other US's done previously. The first revealed inflammation; the second, inflammation and erosions. However, they were read by a group out in CA with whom my RD isn't familiar.

Anyway, I went to GHV-NMH (that's "Great-and-Highly-Vaunted Northwestern Memorial Hospital) and had the US done. The radiologist said, "I'm not seeing any evidence of RA. No inflammation, and any erosions are osteoarthritic." 

"So do I have RA?" I asked.

"I couldn't tell you that," he said. "You'll have to talk with your rheumatologist."

"Well, fuck me sideways," I thought. "Maybe I don't have RA?!?! I mean, since I've always been seronegative, I've always had this nagging doubt about the diagnosis anyway. Of course, even if I don't have it, I'll have to figure out what in hell I DO have...."

I was seriously perturbed.

When I got home, I called my RD. "I don't understand," she said. "Even if you had no inflammation, the erosions should still be there and visible on the US. Erosions never go away."

Subsequently, I managed to track down the actual films of the last Non-GHV-NMH US (wow, is that an acronym, or what?) and sent them to my RD, who sent them along to GHV-NMH radiology to ask them to do a comparison between those films and their films.

By the time I arrived at my RD's office, she still hadn't heard anything from GHV-NMH about film comparisons. She had, however, received the US report, which stated "Completely normal US."

We did some brainstorming and went to review some of my xrays. She saw what she thought was bone-thinning in my feet, and thinning and erosions in my hands. But she wanted to check it out with their radiologist -- if he was on duty.

She returned several minutes later.

"He confirms what I saw. So, you do have RA."

Subsequently, we talked about my meds and our respective poor attempts at dieting (sigh).

I'm continuing on the Enbrel since it seems to be keeping the inflammation at bay. But I'll still have bad days, when the pain and inflammation are present. And I'll always have the erosions, which can be painful no matter what.

So I guess this is as good as it's gonna get.

And I'm okay with that.

But what about GHV-NMH? Doesn't it suck that an enormously well-respected institution can screw up so badly that they can't see on a more-sensitive US results that are evident on xrays?

"What are you going to do about that?" I asked my RD.

"I don't know. I guess I'll have to wait to see how they respond to my request for a comparison."

Pain Meds: Addiction vs. Dependency

So I'm aware I haven't posted in a while.

My posting scarcity basically is the result of two factors. First, I haven't felt like it (which is reason enough unto itself). Second, I don't want my life to be defined either by RA or by a blog about RA. I realize that blogging about RA may be therapeutic for some people (indeed, sometimes I find it to be so). But I'm trying to fit RA into my life (as opposed to trying to fit my life into RA). So, what works for me is occasional posting rather than daily posting. And that's pretty much it. I hope that despite my daily inattention, some may still find this blog to be funny, informative, and useful.

I guess we'll see.

Anyway, as you know, teh interwebs are a great thing: they put so much information at our fingertips and frankly, can seem to make geniuses of us all. So, there's a lot of information out there. But my concern is for the quality of the information available to us.

Fairly frequently, the subject of pain medications rears its head on RA/arthritis forums. I have to say that I often am astounded by the lack of good information that is presented by posters on these forums. I'm just not sure whether it's because there's a dearth of information about the medications (which I kinda doubt: look at rxlist.com, for example) or whether there's a dearth of understanding about how the medications work. I think it's the latter, however.

For example, my jaw literally drops when people say things like "oxycodone is a slow-acting narcotic." Well, actually, it depends on the form in which the medication is received. Percocet, for example, is a fast-acting form of oxycodone (which also contains acetaminophen). Oxycontin, on the other hand, is a controlled-release (i.e., long-acting) form of oxycodone (which can be stripped of its long-acting powers by crushing and snorting it.).

My point is, there are significant differences between the two medications, both of which contain oxycodone.

But if people cannot be made aware of the differences, then they cannot make educated decisions about their treatment.

Speaking of educated decisions....

It seems as if many RAers, when talking about pain medications, refuse to use them because they say that they are "afraid that I'll become addicted." 

Look, I am a former addictions counselor, and I can tell you that there are significant differences between dependency and addiction. It's critical that RAers learn these differences, or we'll risk being in more pain than we need to be during our lifetimes.

So what's the difference between dependence and addiction?

In a nutshell: Dependence occurs when your body becomes physically dependent upon the presence of any sort of medication in your system and that medication improves your quality and function of life. For example, I am on Lyrica, which technically is an antiseizure medication (for neuropathy), and Cymbalta, which is an antidepressant (for migraine prophylaxis and neuropathy). My body has become physically dependent upon these very powerful medications -- enough so that if I were to stop them cold turkey, I would experience withdrawal symptoms that could get really, really ugly. But am I addicted to these medications? Nope. What's more, because they decrease my pain, they improve the quality and function of my life.

Of course, the same type of physical dependence can happen with narcotics. But, as demonstrated above, physical dependence, by itself, is not the same as addiction.

Admittedly, physical dependence can be, and often is, a part of addiction. But so much more is involved in addiction. For example, anyone who has watched Intervention on A and E knows that addiction also involves powerful biological and psychological forces that compel the addict to satisfy -- again and again -- his or her needs for a specific substance or high, regardless of the (usually negative) outcome. In addition, addiction is characterized by extreme decreases in the quality and function of addicts' lives.

Yet another significant difference (that is implied, though not directly stated above) between dependence and addiction is that addicts typically use medications to feel some sort of high. Patients who are drug-dependent feel no such high when they take their medications.

Anyway, there we have it: my rant for the week.

ZENbrel

Back BRA (that's "Before RA" -- though, with my recent weight gain, I surely could use a back bra for those annoying new jigglers...), I was something of a prescription and medication whiz kid. Simply because I've always been interested in both medicine and chemistry. (Yes, I am a total goob. A potty-mouthed goob, but a goob nonetheless.) In college, in fact, I did a double-major in chemistry and psychology, and seriously considered medicine as a career.

Anyway, you could say, on a certain level, that I "loved drugs." Really and truly loved drugs. For example, I knew brand names and generic names, effects and side effects, mechanisms of action, and medications in similar classes. I was a walking PDR (Physician's Desk Reference, the "medical bible" on all things prescriptive) whom family and friends would consult for advice on medications. I was so interested in this stuff that I kept the actual PDR (for light reading, not for extra toilet paper) in my bathroom.

But something strange happened to me ARA (that's "After RA").

Sure, initially, I did all of the research on the meds I was trying: As a chemotherapy agent, Methotrexate depresses the immune system... which explains why I got colds and cold sores after every dose. And Leflunomide, well, that causes alopecia (the technical term makes hair loss sound much less threatening, don't you think?), which explains why I developed (and have yet to recover from, dammit) granny hair and had to -- good God! I mean, it's so '80s -- GET A PERM! (So now I'm fat, bald, and slightly fuzzy. Oh, the indignities.)

I actually became obsessed with RA meds. Mostly because they're so scary. Turns out black boxes aren't just found on airplanes, and when you have to consult them, they both contain information you really don't want to have to know.

My obsession had me consulting and re-consulting, poring over information about the bad things that could happen, and becoming hyperaware of my own body: "My throat is hurting a little bit: am I getting a cold?" "OMG -- where did that bruise come from? Do I look pale? Is something happening to my blood?" "I have some specks in my eye. Should I discontinue the Plaquenil?" "I have abdominal cramps: Is that from the Leflunomide or is it from my period? Oh, wait... I don't have a uterus. Nevermind." "Oh God, please, no -- I HAVE A HANGNAIL! What could that mean?"

I was driving my poor husband crazy. Okay, forget about him, I was driving MYSELF crazy.

But one day, something happened. I guess you could call it a cosmic karmic crisis. I just became completely overwhelmed, depressed. I wouldn't get out of bed or eat -- couldn't get out of bed or eat. I actually lost weight. I cried. And cried. And cried. This went on for several weeks. (Again, my poor husband.) As a former therapist, I observed with scientific interest and accuracy my symptoms. As a human being, I absolutely loathed what I was going through. Finally, I realized I was miserable enough both to get myself some help (on a variety of levels) and to seriously change my approach to RA and to living.

So I did.

I can't say it was easy, and I admit to having the occasional relapse into my old behaviors. But I just won't do that any more. I can't afford to do that anymore -- spiritually, emotionally, physically.

So I tossed out my PDR. And when I get a "consultation" these days, I respond peacefully, "I just don't know. I'm afraid you'll have to look that up yourself."

Because what will be, will be. I'll deal with it as it happens, if it happens.

And when people ask me what medications I'm on to treat my RA, I tell them, "I'm on ZENbrel."