Moving

Today's physical activity was yard work. I mowed front and back, considering that if we could all just let our lawns grow, we'd reduce air pollution and help the Earth by the grass's greater ability to recycle the air and pull out excessive carbon. Then, I dug holes around the back fence, filled in other holes, and planted sunflower seeds in the little holes and filled them back in with topsoil and potting soil. I spent about an hour sweating out in the sun (and another half hour hauling trash to the recycling center/trash area). I try to get out and move around on my days off, even though I haven't been able to get myself going fast enough to get to the gym on my work days the last few weeks.

I have an appointment at the pain clinic next week. I don't think the approval in with the insurance will let him give me the lower back shot next week; hopefully it will not take long to get a new appointment for one, as I am starting to have a lot of difficulty walking and driving again. I had to adjust the shoes I was wearing for work. If anyone knows any shoes like Crocs or Okabashis with basically a light foam sole, but with a professional-looking upper, please let me know! It would really help me out.

Anyway, keep on moving, everyone!

Thursday musings

As I got on the highway heading home today, a black Mustang with silver racing stripes got right on my tail. I got over and let the guys by. They were cute and trying to dare me to race them, and I was tempted for a moment but let them pass by. I'm too scared to get a ticket to really let fly.

I castigated myself for a moment for cowardice, then remembered that I had to get some groceries on the way home--just a couple bits--and started mentally composing my shopping list, and singing along to the radio, and thinking about what I need to tell the doctor in two weeks. I'm thinking I will need a shot in my lower back at least; it's getting hard to drive again as that nerve flares up.

The weather was odd today; I'd be in bright sunshine and it would be pouring rain, then under the black clouds it was gloomy but dry.

Anyway, I rounded the bend to North Pole and saw flashing police-car lights. I got over to the left lane and checked my speed--not excessive, though I did slow down a little anyway--then, I realized that the car the policeman had stopped was that same Mustang. Sorry, guys; sometimes, slow and steady does win it.

Oh, hey, looks like Vista SP1 is out. I have some major finance homework to finish tomorrow. Guess I'd better update and get some sleep so I'll be fresh for homework in the morning.

Pains in the something or other

So, yesterday, I walked to the gym. First, the parking lot is under construction, and secondly, I might as well walk, it's only about a mile. Got there, water aerobics were cancelled. I dragged myself out of bed at 0700 for what, now?

Later, I walked to the shopette and back to get some milk and a couple bits, since the commissary is closed on Monday. By last night, that twinge in my lower back was back, and I've had trouble walking today (by which I mean I have a pronounced limp). Called for a referral to the pain clinic, hopefully it won't get too bad before I can get a cortisone shot. I can mostly deal with pain, but it gets hard to drive with that particular pain--the nerve gets all buggered up and my leg doesn't work right. I don't know if it was just "time" for it to flare up, or if I caused it walking somehow. If so, it's got to be a terrain problem; I walk all day at work without screwing myself up.

Anyway, my hubby is now convinced that I need a breast reduction. A lot of the pain I get is in my shoulders and just below the bra strap line. And somehow, in losing weight over the past year I managed to get from 38DD to 36DDD. Well, it's still not as bad as when I was nursing--after a year of that, I was about two cup sizes bigger than this. Anyone have any experience with that? Surgery makes me nervous, seriously. Plus, I sort of identify as being large-breasted. How much would they take off for something like that?

Vacation Ramble

I'm off this week. My mother is in town, and I hadn't seen her in two years. My neck and hands are having bad weeks for swelling and pain--I should call tomorrow and get a referral to the pain clinic for a cortisone shot in my neck where that disc is bad.

So, anyway, I still need to do all my schoolwork for the week. My boss called this morning to let me know that there was a holiday next week he'd forgotten to schedule, so I told him I'd just work the full week and take 8 hours holiday pay as a bonus. We went to the Gold Dredge today, which was really interesting, and stopped at the Pipeline on the way up.

Now, we're watching Mr. Magorium's Wonder Emporium, so I made a decision: when I'm an accountant, I'm going to have a business card made up with the title "Counting Mutant."

Shoes

I must confess, I've never been fond of wearing shoes. I feel better overall and in my feet without, and I'm not convinced of the shoe industry's rhetoric about needing supportive shoes; we've evolved to walk barefoot or with leather moccasins that mold to the feet but are only a protective covering. Surely, doing so does not throw us out of alignment? The flip side of that coin is that we also evolved to walk on ground that was softer to our feet and had some give to it. Concrete sidewalks and hard floors are also of the modern world.

Last week, the day DH left, we went to buy him some walking shoes. The guy at the Athlete's Foot (it's a terrible name for a shoe chain, isn't it?) was very passionate about shoes. His spiel was quite long. But since then, I've been thinking that I should get some better insoles. Actually, I feel better overall when I use the Profoot 2 oz. Miracle insoles; I may just need some new ones, rather than some different ones. Still, since I have to wear shoes, I know that the shoes I wear make a difference in how I feel. The best shoes I've found are Okabashi sandals; real Crocs aren't bad, but watch for knockoffs. But if there are cute shoes you're just dying to wear, or if you can't manage new shoes in your budget right now, try to invest in some decent insoles. It might make a world of difference to you.

I will, however, probably go to Athlete's Foot in a couple weeks to get some sneakers and insoles for walking. Our water aerobics class will be cancelled for the summer while they repair and renovate the pool at the gym, so we're going to meet and walk instead. I have some cheap gym shoes, which are OK for using the elliptical or bike at the gym, but I should probably get some good walking shoes. I thought about getting shoes I could wear to work while I was there, but they only appeared to sell dress shoes for men.

I missed water aerobics today, because I had to be at work early. I did a half-hour on the bike, instead. I wish the seat could be set shorter than ours can--I have to sit at the edge of the seat--but it's still very handy to have as a backup plan.

Good and Bad

I've been in flare this week regarding the pain that is inflammatory, particularly in my fingers and my neck. Still, I've had some OK days when not discussing pain issues. Last weekend, we saw Iron Man (like half the people in this country, right?). My son LOVED it. I loved it, if less. Sometimes, feeling good about something outside makes a day OK. We basically had a party after, playing Scene It and some board games. I can't drink much any more, though some of my friends drank quite a bit (I nursed a banana bread beer, which was pretty good on my stomach, which doesn't tolerate--well, anything much, actually; IBS has taken over my life even more than the FMS, I guess).

Hell is other people...

If you're not feeling sensitive, read this.

I couldn't respond. I'm shaking with anger. Never mind the pain people live with on a daily basis. Never mind that addiction is virtually unknown among people who are actually in pain. We have "AngryPharmacist"s complaining that patients use it as an excuse to take pain medicine--taking pain medicine makes me vomit at least once every couple weeks, but obviously, I'm enjoying the dizziness and nausea because of some theoretical high, and then we have some nurse bitching that the only real "sufferer" she's known must have been suffering because she didn't take real pain medicine, managing with massage and "an occasional Advil."

I self-treated with Advil for a good decade before that allergy took out an entire class of pain medicine. I have obvious inflammation in major areas of my body, and doctors who hear about the pain will dismiss other real issues (the muscle pain is worst? OK, we won't treat the cervical disc disease for now, then) because they'll attribute everything to FMS--who cares if my fingers are stiff and swollen and crack when I use my hands? Obviously, since I have been independently diagnosed with this several times, I made up having pain all over so that I could get Flexeril I can take only at bedtime because it renders me incapable of functioning at all for several hours.

"Are you in any pain today?"

It's such an innocuous question, isn't it? "Are you in any pain today [or "right now"]?" You hear it every time you go to the doctor, or at least I do. I can't remember not being in pain. It's been years if there ever was a time. Right now, my hands hurt, my neck and back hurt, and I have a vague, all-over ache. On top of that, I have a spring cold and/or allergies that have caused a sore throat. A couple hours ago, when the intake nurse at the clinic here asked me if I had any pain right then, all I could say was "no more than usual." Actually, it hurts like hell to walk on my right foot, but as I wasn't walking at the time, it was fine (and it was reasonably OK walking with the surgical padding, anyway). (As a side note, it wasn't a wart at all, thank the gods; just a very nasty splinter that my immune system had pretty much managed to destroy, but there was a pocket left, around which was a great deal of inflammation that made it hurt to walk. I am more than pleased--no liquid nitrogen + no strange skin viruses = happy Jack. To be honest, I can watch surgery more easily than I can deal with the thought of certain skin conditions; warts and ants squick me out seriously).

Anyway, what does a chronic pain patient say to "are you in pain today?" For a checkup or a visit related to the chronic condition, the truth is relevant, but for a specific, acute problem, don't the other pains cloud the issue?

In what other ways do Fibromyalgia and other chronic conditions get in the way of treatment? We don't always respond the same way to medications or treatments; physical therapy and chiropractic care can either do wonders or backfire severely. Doctors may shy away from us entirely, or overprescribe varying protocols and cause medication interactions or overdoses. And gods forbid we go into an office having done our homework or research; in my experience, most doctors hate prepared patients (the good ones don't).

Post a comment below on whether you've ever had pain cloud the issue when you needed a specific problem addressed by your medical provider.

Sacred

Edit: It's not a wart--just a nasty splinter and an overreacting immune system.

So, I have a plantar wart. I had an HPV infection of this type over 20 years ago--my sister and I had warts on our toes, having been infected at the swimming pool by my grandmother's house. Anyway, this time the pool may have been involved again; at any rate, that's where the symptoms started. I thought a rock or splinter may have become embedded in my foot, but when after 3 days it was clear that it wasn't behaving as a splinter (and it hurt like mad to walk, being on the exact spot in the middle of my heel that bears most of my weight when standing or walking), I went to have it looked at. Naturally, the clinic is short providers, so I had to go to urgent care in town; by the time they diagnosed it but couldn't treat it, it was too late for me to get a referral from the clinic, so I have to wait until Monday to get treatment in the works.

The genius doctor assured me that this kind was not contagious or transmissible, but of course, a quick Google assures me that it can be, even if not extremely so. (actually, that link suggests to me that the pool is a likely culprit). Anyway, because it is in a spot that is causing my whole heel to become irritated, I was told that I was under no circumstances to do water aerobics until I get this treated, and I should stay off it as much as possible. Since I work on my feet, that wasn't an option; I asked what else I could do. I have to pad the area as well as possible--this means surgical pads and tape, then thick padded socks, then insoles in my shoes.

I'm generally known for my awesome funky socks. I'm used to new things going wrong with me, well, pretty much all the time. But man, padded, diabetics' socks? Don't mess with my socks. Some things are sacred.

To hide, or not to hide?

As a person with an invisible disability, it can be frustrating if not infuriating to try to explain what's wrong, to feel at your very worst, and to hear "but you look fine!" Almost as frustrating is the hopeful, well-meaning acquaintance who remarks, "you look good/better today." It's enough that sometimes, it doesn't seem worth it to try to explain.

How do we deal with that frustration? One way is to resolve to "look fine" all the time, and never even mention that we're ill. If we need a little more rest to get things done, or are a little slower sometimes, so be it. Of course, this can cause problems when we hit those periods where it's obvious to all and sundry that there's something wrong with our bodies.

Another way to deal with it is to give in and stop making any effort to hide how we're feeling. One down side to this is that we're seen as hypochondriacs and whiners. Another is that it's boring. Being ill becomes our one focus.

A decent middle ground is to not make it a topic, but to be honest with people as you start to know and trust them enough to converse with them personally. Generally, people are understanding and won't make a big deal of it if you don't. My "fallback" middle ground is to make a joke of FMS and arthritis--"this is all my Fibromyalgic ass can take right now."

What do you do, or say? Who around you knows you have Fibromyalgia?

Writing, art

I wrote a rap earlier, and I have no idea why. I can't rap to save my life. I sound like a white girl from the suburbs trying to rap (I'm actually not from the suburbs, but my family isn't nearly as, err, urban as the area of Toronto that was my first home).

I'm doing badly this week with pain all over. I managed to convince the doctor to give me Ultram, but somehow, he's convinced that working on one type of pain at a time is the answer, so I did not get the cortisone shot in my neck that I also badly needed on the grounds that the pain in my back is worse. What's that about?

Anyway, like I said, I'm doing badly. I'm a straight A student and pulled Cs or Ds on my quizzes this week. Nearing the end of the class, this is not what I needed. But just getting through work with a back brace and a wrist brace and a pronounced limp is all I can manage, and not even that without crying. I'm not up to my standard in any sense, and the best advice I can get is "keep moving." I'm at the point where my body won't do that, and then what? My wrists and fingers are swollen and my brain is near shutdown. I had to admit that to my manager this week and it's starting to become obvious.

I was going to share the whole rap, but it's explicit content and might offend some. So, an excerpt:

You tell me you know how I'm feelin'
but a friendly hand can send me reelin'
'cause the pain is real, not deep inside
even though the pain I know I'm s'posed to hide

What helps take your mind off the pain when you have a few minutes of down time? Writing? Singing? Music? Besides the angry FMS rap, which hit my brain out of the blue, I bought a Doodle Diary at work. I may doodle with more purpose than the diary assumes, but still, it's soothing (minus the detail that my hands hurt more when I hold a pen--I've had serious hand swelling lately). Meditation, especially water meditation, can also be helpful, though breaking through the pain cycle to reach the right state is difficult on really bad days.

May you have a pain-free hour today!

Namaste,
Jack

A bad spell, and

On a personal note, I'm going through a rough patch right now. My fingers object to me doing almost anything, my neck and back are screaming constantly, and I feel worse rather than better after working out. I'm creaking and in pain, and I'm trying desperately to hold it together with my spouse going TDY in a few weeks. The kid's therapy will be interrupted and I need to try to coordinate another therapist being able to see him across the country. I need more than ever to be two people, and I'm too tired and in too much pain to be even all of one.

OK, thanks.

Aside from that, there's something important I'd like to bring to your attention. As most of my readers (both of you) know, many pain doctors are very reluctant to prescribe pain medication. They cite supposed dangers of pain medication (though opioids taken correctly are less dangerous even than the "innocuous" carrier drugs many of the mildest are paired with, ibuprofen and acetominophen) and threat of addiction, or worry that patients with chronic nonspecified pain like Fibromyalgia may be faking to get drugs that make them high (there are far easier ways--if I want an illicit high, it would be far easier and more effective to score some marijuana, but I'm generally a fairly law-abiding citizen).

What doctors need to know is that recent research shows that there are dangers to leaving chronic pain untreated. In their study "Beyond feeling: chronic pain hurts the brain, disrupting the default-mode network dynamics," several Northwestern University doctors discovered that under the constant input of chronic pain, the brain rewires itself, bypassing some critical areas involving memory and emotion. Another study by the same team shows that brain mass is actually lost by patients dealing with long-term chronic pain, particularly in areas dealing with pain perception and response and with interpreting data and decision-making.

Patients with long-term chronic pain have long known that "brain fog" is one of the results of living this way. Now it turns out that making us suffer through it is causing brain damage, as well.