RA (Rheumatoid Arthritis) Sucks

If Only....

Having contended with an excess of pain, disability, and occasionally even social shunning, many people with chronic illnesses develop IOS -- "'If Only' Syndrome." IOS refers to the tendency of people plagued by chronic illness to declare that if only they didn't/could/couldn't/did X, then their quality of life would be so much better -- with "X" varying from month to month, year to year, etc.

Let me give you some examples: "If only I could walk longer distances, things would be so much better." "If only I had better control of my hands, I could do so many more things." "If only I didn't have to wear these heavy braces, I'd have more energy."

You know what I'm talking about, of course. And given that RA is chronic and incurable, there is a kind of wistfulness to our "If Onlies." They reveal, at any given moment, what's bothering us the most, what's the most important to us, what we would do if we were given magic wands or super powers to limit our disease (after all, we're not talking about being God/Gods here: we can't remove the disease from our bodies.).

In my case, for the past year, my "If Only" has centered on my neuropathy. If you don't know what that means, I'll gladly share with you the simple definition: it's when thing go screwy with your nerves. In my case, I have peripheral neuropathy, which means that things are screwy with the nerves in my feet and legs and hands and arms.

Apparently, neuropathy is not uncommon in RAers, for the simple reason that inflammation of the joints results in inflammation of, and damage to, the nerves. Unfortunately, nerves are notoriously difficult to heal (which is why people who suffer from significant spinal cord injuries remain paralyzed more often than not.).

So, yeah, neuropathy. In my lower body, the toes go tingly and numb while a burning sensation encompasses the rest of my foot and my leg up to about mid-calf. In my upper body, my fingers go tingly and numb while a burning sensation encompasses the rest of my hand and my arms up to my elbow. I also have some burning at the back of my neck. The neurologist said something about some degeneration that RAers can develop in the c-spine, and I have a moderate to severe case of it, but blah, blah, blah, blah, blah. 

So, if only I didn't have this friggin' neuropathy, my life would be SO MUCH BETTER, dammit!! I could deal with the rest of the RA bullshit.

At least I think I could.

What's your "If Only?"

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."

Happy "Independence" Day

Today (7/3) marks the official (i.e., legal) celebration of Independence Day.

It's also the anniversary of the deaths of two of this country's great founders, Thomas Jefferson and John Adams. Both died on July 4, 1826, and among Adams' last words were, "At least Thomas Jefferson survives." Ironically, unknown to Adams, Jefferson had died earlier in the day.

Anyway, on that extraordinarily happy note, let's talk about independence and RA.

It's pretty clear that when people talk about chronic disease in general, what they fear most is pain. And that makes sense. What numbnuts ever wants to be in pain? (Well, okay, let's just admit here that certain people find pain sexually stimulating [13 year-olds, please cover your eyes], but I'll bet they'd change their minds if they had to experience said pain chronically, 24 hours a day. "Permanent electrodes to the... Why, no, but thank you for the generous offer.")

The second thing that people seem to fear with regard to chronic disease is the loss of the very thing we celebrate today: independence.

Think about independence in general. We crave it from our earliest times. In the womb, we kick and move about, eager to be released from its safe confines: "Mom, can you hear me? Let me out, dammit, now!" Some of us want it so much that we even arrive earlier than expected! When we're infants, we want to explore our worlds, and we crawl around, hands out, looking for new adventures while under the watchful eyes of mom and dad. When we're toddlers, we're running around and going for broke -- much to mom's dismay as the contents of the china cabinet suffer some damage. When we're children, we relish the freedom of flying around our neighborhoods on bikes, skateboards and rollerblades. Or we run with ecstasy, our hearts pumping blood and our lungs filling with air. And when we're teens? Of course, there's that place known as license nirvana. And the apex of independence? College. Ahh: FREEDOM.

As we age, of course, independence takes on different hues, staggering in their colors: financial freedom, the freedom to start a family, the freedom to change careers, the freedom to carve out our own niches. But, truth be told, we're pretty well occupied with the one freedom from which all other ones seem to descend, and that's financial freedom: Do we have enough money/freedom to buy a house? To have kids or even pets? To buy a new car? To get a degree?

We never really think about physical freedom or independence.

Until it's threatened by something like RA.

When you have to ask someone to open bottles or cans for you or ask someone to help you get dressed... when you have to use canes or braces so that you can get where you need to go... when you have to ask someone in the grocery store to reach up and get an item for you because you can't stretch that far.... Well, when things like that happen, you think a whole lot about physical freedom and independence.

On my best days, when I think about independence, I have to say that I'm thankful for the newer medications that help me have a shot at slowing the progression of this shitty disease and extending my freedom. I'm thankful for the independence I have to write this blog and help create a sense of community, so that those of us living with RA don't feel so alone. I'm thankful for the medications that help to control my pain so that I can eke out a little more activity and thus, freedom. I'm thankful for the people who, when I am confronted by what appears to be a limitation, reach out a hand to help me, thus making that limitation less limiting than it might otherwise be.

So, yes, this 4th of July, I'm celebrating my independence. I hope that you, too, are able to celebrate yours.

"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....

A Horse Is a Horse....

A horse is a horse, of course, of course
except when by "horse" you meant "hoarse," of course
and no one can talk when they're hoarse, of course....

So, the latest addition to my RA universe is the appearance of hoarseness. Hmm... I might better have said that the latest subtraction in my life is the occasional disappearance of my voice. After all, that's kinda what RA does: it slowly takes things away. Things like dexterity, mobility, energy....

There's no question that I can see it all happening, despite the fact that it's a painful war of attrition rather than a single-strike attack. I can see it in the way I no longer open jars; in the way I use my arms rather than my hands to hold doors open; in the way I can't play 18 holes of golf any longer; in the way that I become grumpy after 4 hours of activity; in the way that I limp when I first try to walk; in the way that I ache every single day; in the way that I find myself becoming obstreperous about taking medications....

Yes, when I look back over the past couple of years, I can see what I've lost to RA.

And now I seem to be losing my voice. 

I know (because I'm smart and I've looked it up!) that what this means is that RA is affecting the cricoarytenoid (how's that for an SAT word?) joints in my larynx, thus changing the pitch and tone of my voice. Apparently, up to 30% of RA patients may suffer from this malady, which (usually) is not dangerous -- just a major pain in the ass (so to speak).

Now, I must confess that I am an extrovert: I talk when I shouldn't talk, say more than I need to say, and converse and communicate with conviviality. But lately, crikey (oooh -- bad pun!)!! I've been chattering a whole lot less because it is becoming difficult, at times, to get the damned words out. 

And whereas previously, words represented my livelihood, now they represent nothing less than my life. I use words to articulate my thoughts, feelings, and ideas, and to help me make sense of the senselessness of RA.

And thus, while I may occasionally lose my physical voice, I cannot and will not lose my VOICE -- that part of me which gives expression to my life and my soul.

So must it be with all of us who have RA.