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."

In Recovery

Well, I had my hip surgery last Friday. And it has revealed to me four things:

1. I am getting old.
2. Trying to get around on crutches / a walker while being off RA meds doubly sucks.
3. Because my arms, chest, and stomach hurt so much from trying to get around (let my life serve as a warning to others: this is what happens when you're fat and out of shape and have hip surgery), I have become pretty much entirely dependent upon Eric for everything (though at least I can still get on and off the toilet "under my own steam." Couldn't do that the first night, though: Consequently, I'm now the happy owner of four different, large medical supplies. Sigh.)
4. I have reached the end of viewable television.

Anyway, I cannot put any weight on my right leg for six weeks. That's right: SIX weeks! Ugh. To be honest, I'm not sure how I'll do it. If I'd known how bad this would be, I think I might have just gone and lived in pain for the rest of my life.

Granted, I brought a lot of this on myself, by being a witless lard-butt. But one of the pre-op nurses said to me, "You're too young and not overweight enough to have this happen to you. How did it happen?" The short answer is "probably golf." But it all had me wondering how in the world the elderly and the very overweight do this kind of thing.

The surgery itself went well, and I remember not a bit of it (note: this may be why it went well.). My primary concern wasn't pain (I was expecting that), but the idea that I'd barf my way through post-op (as I'd done on nearly every other surgery I ever had).

No barfing for me, though. Apparently, however, I was so concerned about barfing that throughout my recovery room stay, I kept asking, "Am I nauseous?" "No, Kim, you're not nauseous." "Oh, okay.... Am I nauseous?" Poor nurses.

I start PT three times a week beginning next week. Ugh. Not looking forward to it. I also go for a post-op check-up next week.

I miss my life, RA-ridden as it was.

"Fix"ation

So, I had a visit with the orthopod about my hip.

Based on my xrays and symptomotology, I've received a tentative diagnosis of FAI: Femoroacetabular Impingement, which sounds a lot more complicated than it actually is. In my specific case, it looks as if some of the cartilage may be chewed up. This mastication appears to be caused by a femur (thigh) head/ball that is too big and continuously rubs/depletes/tears the cartilage in the sacroiliac (hip) joint.

Ha -- I've got big balls!

Anyway, I have to have a hip MRI/arthrogram next week to try to confirm the diagnosis. When the hospital called to schedule the test, they told me that I'd need to have someone drive me home afterward because the arthrogram is typically so painful that people are unable to drive themselves home. You know, though, this is my thinking: I am not a pain wimp. I am well acquainted with menstrual cramps, ovarian cysts, migraines, and RA: my tolerance for pain is pretty damn high. Plus I have big balls. Will I really need someone to drive me home after the procedure?

The interesting thing in the midst of all of this is that there is no evidence of arthritis in my hip. Yay. If left untreated, however, FAI usually develops into OA of the hip. Boo.

So what's the treatment for FAI?

Surgery.

So I find myself sitting here and thinking, "Please, God, let me have FAI.... Please, let it be FAI." Why? Because it's fixable. And so much of what I suffer from with RA is not "fixable."

How ironic is it that I'm sitting here wanting to have surgery -- having a fixation on what's fixable? On one level, it's undoubtedly warped. But on another level, I'm guessing that other people who suffer from chronic illnesses might think my "fix"ation is perfectly normal....

Rheum-Apologists

I've been having a bad couple of weeks, feeling much more achy and fatigued than I've felt since starting ZEnbrel back in January. (The paranoid part of my psyche keeps wondering, "Is the ZEnbrel still working? Should I be worried?")

Of particular annoyance, however, is my hip. I feel pain in my groin, along the side of my hip, and in my glutes. It's painful enough that I've been walking with a limp for the past couple of days. Twice, it has even "given out" on me. Argh.

Anyway, yesterday, I finally decided it was time to call a doctor about it. The first decision to be made, however, was which doctor to call. Do I call my RD or my GP? Since I'm not sure whether this is RA-related, I gave my RD a call.

Personally speaking, I like my RD very much. After an initial sparring on both our parts, we respect and like each other. Professionally, though, I sometimes find her to be exasperating -- a Rheum-Apologist. Allow me to explain....

My Rheum-Apologist refuses to treat me for anything but my RA. She will not treat me for side effects of RA, nor will she treat me for side effects of any medications that I am taking for RA.

Thus, for example, when I was on Arava and it made me develop hypertension, she sent me to my GP for BP meds. When I developed neuropathy from my RA, she sent me to my neurologist for Lyrica to treat the neuropathy. (Of course, she also insisted that neuropathy is not a common side effect of RA; my neurologist seems to think otherwise. Moreover, it seems a common event on most of the RA forums on which I lurk.) When I became depressed as a result of the RA, she sent me back to my GP to treat the depression. When I developed severe and continual cold sores as a result of MTX treatment, she sent me back to my GP for Valtrex.

I find the whole "bumper-doctor" approach to be infuriating at times. On one hand, I understand that specialists basically want  to remain within the confines of their specialty and knowledge. On the other hand, it makes it that much harder for patients -- even motivated and knowledgeable patients like myself -- to maintain an adequate level of care. On one hand, I understand that specialists don't want to find malpractice lawsuits filed against them for practicing medicine outside their specialty. On the other hand, how are patients with chronic systemic diseases supposed to get adequate care and continue to lead productive lives (i.e., lives not spent at medical appointments)? On one hand, I get it. On the other hand, can't I catch a break?

What is the norm when it comes to rheumatologists and what they treat? And what is the appropriate expectation?

Initially, I made an appointment to see my rheumatologist about my hip. Later in the day, however, her assistant called an referred me to an orthopedic specialist.

Shocker, that.