A haiki by me
In goes the needle.
Fifteen Mississippis of
ow. Thank you, Enbrel.
A haiki by me
In goes the needle.
Fifteen Mississippis of
ow. Thank you, Enbrel.
If only all our choices were so easy.
So, I was asked and decided to agree to working a few shifts for the retail outlet I used to work for. I went back and forth about the decision; I’m still not thrilled with the way the store manager handled my request for accommodation during a flare, but without that job last year, I’m not sure how the mister and I would have made ends meet. I felt we parted ways on a bad note, but if there’s anything this economy has taught me, it’s this: Don’t burn bridges. You never know when you might need someone’s help in a way you’d never counted on.
I also remember how amazing my old manager at my old store was during my first flare, scheduling me for shorter shifts, allowing me longer breaks and being so flexible with scheduling. So I know the way my current manager reacted isn’t a company-wide thing. I still feel grateful enough to her and the way she handled the time being my first symptoms and getting put on Humira for the first time and beginning to feel better that it’s transferring itself just a little bit to my current score.
So, like I said, I went back for just a few shifts over the holiday season. In return, I get the awesome discount through the end of December. (Score!) Yesterday, I worked my first shift, a short one. Today, I was scheduled for a much longer one and oh my goodness, am I ever feeling it now. I’m sore all over, and I’d like nothing more than to lay in a tub filled with Icy Hot, drinking some delicious hot tea.
In the meantime, sitting here wrapped in fleece with my cat purring away and giving me a mini-massage is a close second.
It’s kind of perfect that it’s Invisible Illness Week, with the way I’ve been feeling for the last few days. I don’t know if it’s a reaction to the flu shot I got Friday, a flare, side effects from my increased dose of the yellow dart (aka methotrexate) or something else entirely, but this week has not been a good one, disease-wise. I’ve been extra sore, extra exhausted, nauseous (blech) and headache-y, plus the tendons in my left hand — which had been doing OK after a prednisone taper — have decided that they were just kidding about feeling better. Awesome.
(So, I took a break from writing this to paint my nails, and my left hand is so bad, holding the polish brush to paint my right hand left me in tears. I’ll be phoning my rheumatologist in the morning. Geez.)
The point is this: No one around me (with the giant exception of my husband) knows how hard this day was for me. Not my boss, not my co-workers, not any of the people I interviewed today, not my neighbours. No one.
The invisible part of invisible illness is a mixed blessing. The fact that no one knows it’s a Bad Day™ is both a good and bad thing. To the average person, I look like a vibrant, healthy twenty something. And that’s a good thing because, as much as I am all about advocating for those with chronic illness, it’s nice to have the option not to do that all the time (or, at least, when my psoriasis isn’t visibly flaring). But I struggled today. Things that should have been easy were hard: opening a door, holding an empty mug in my left hand, sitting in my chair at work, painting my nails, focusing on conversations. Today, I could have used help. But, other than my husband, no one offered—not even those who know I have a chronic illness. And I think that’s because—and I know everyone out there with an invisible illness has heard this at least once—I don’t look sick.
That makes things hard sometimes. I don’t like asking for help, but that’s on me. Having a chronic illness has forced me to change how I approach things, and I think that’s OK—at least now. I won’t lie: I struggled with that for a long time. But everyone has something they’re dealing with; life isn’t perfect, even for healthy people. And that’s OK, too. I’m not thankful I got sick, but if there is one think I’m thankful it did for me, I’m thankful for that. I’m thankful I can recognize life is hard for everyone and maybe we should all do what we can to make it easier, to make people feel happier (or maybe just less sad) and less alone.
It’s a thought, anyway.
It’s strange to think that health care reform was passed six months ago. Six months ago, there was a lot of hard-to-stomach rhetoric floating around: baby killers, death panels for the elderly and health as a commodity. But, as so many have said — and those with chronic illness know too well — it’s the healthy who have the luxury of seeing insurance that works when you need it as something to be taken for granted.
This health care reform bill is not perfect. It’s not universal coverage. For me, it doesn’t go anywhere near far enough. The provision that will actually help me — relief for those of us with those pesky pre-existing conditions — doesn’t go into effect until 2014. The government is, of course, toting all that happens now, all those who are helped now or who will be helped soon. But, really, I was and continue to be pretty disappointed in the so-called “reform.” Nothing substantial has changed. Sure, I’m glad that in four years, I would have to worry as much about losing my insurance and not being able to get that back.
I know there’s no such thing as a free lunch. I am willing to pay for my health care. But I don’t think it’s right that people should have to choose between eating and taking the medications. I don’t think it’s right that people should have to stop taking drugs that help them because they can’t afford the co-pay. I don’t think the insurance companies should have been the big winner in health care reform, with millions of mandated customers coming their way because of these changes.
There’s a lot more that could have been done if the powers that be really wanted to help the uninsured, the under-insured, those of us with pre-existing conditions. And they didn’t. Maybe in the future Congress will man up and do a proper job of it. But for now, I am not impressed.
My recent birthday was an anniversary of sorts. My 21st birthday five years ago was the last one without chronic disease. I guess that’s kind of a morbid anniversary, but it’s there nonetheless. Five years seems like a long time to be sick, and it is. Five years is the difference in being and undergrad and working in the “real world.” It’s the difference in being happily single and happily married. It’s the difference in knowing I wanted to be a journalist and realising that it’s not all it’s cracked up to be.
But, looked at another way, it’s not very long at all. It’s taken me almost all of these past five years to come to terms with the fact that chronic illness means forever. That, unless something changes over the course of my lifetime, I will have psoriatic arthritis and psoriasis for the rest of my life. If the average lifespan is 77 years and I’m 26, I have (God willing) at least 51 years left if I hit the average. In that span, five years doesn’t seem like all that many.
In the last five years, I’ve accomplished quite a bit and experienced many changes — getting married, moving eight (!!) times, getting two degrees, adopting a dog and then a cat, coming out of remission, the ups and downs of trying new drugs — and I expect the next five years will hold so many things I can’t see now. I guess the point is this: Life doesn’t stop — for me, for my loved ones, for the rest of the world — because I got some bad news. It may have taken me most of the past five years to accept that things will be different for me from now on, but I don’t think that means giving up. I will live life with as much gusto as I can manage — or fake — for as long as I can. I’ll keep trying and re-trying different medications until I find the combination that works best for me. I’ll take care of my physical body — with exercise and good food — as well as my spiritual life. I will keep experiencing
the things that make life so full and good: the laughter of children, curling up with a good book, seeing the beauty in things great and small, the sound of my husband’s voice, the joy with which my little pup Otis takes in everything and so much more.
I am lucky and blessed in so many ways. It would be a shame for me to dwell so much on the negative — on what I don’t have — instead of loving what I do. Lindsay posted this great quote that sums up so much of what I’m feeling that it seems right to end with it:
The psychological war with illness is fought on two fronts: on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. … Self-pity is a poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.
- Richard Cohen
I went to the pharmacy today, hoping to ask a question about the yellow dart (a.k.a. methotrexate) (whether I can use a vial of preservative-free MTX multiple times — unfortunately, I’ve gotten conflicting information on this, which is super awesome). But apparently, the pharmacist decided she’d rather talk to the people paying for a Snickers bar about starting up a swimming program for 10 minutes. (I wish I was kidding.) You’d think with how many doctors, nurse practitioners, pharmacists and other medical professionals I see and have seen, I would have known what to do. Instead, I decided to leave and phone a (different) pharmacist later.
Still, there are ways to deal with the incredible number of medical personnel we encounter with ever-increasing frequency, it seems. I think the most important thing to remember is that they are human. Doctors, nurses, pharmacists, the woman who runs the front desk at the doctor’s office: All of them are people, too. They all have bad days and good days. “Please” and “thank you” work wonders. It seems really simple, but I think remembering that is really helpful. Being polite never hurts, and I think we’ve all seen how well yelling and screaming at people works at getting them to be willing to go the extra mile for you. (Read: Not very well.)
Sometimes, it’s hard for me to remember that, even though I live this every day, the doctors and nurses and all the others are doing their jobs. I think it’s good to remember that it’s up to me to help them to understand how bad I’m feeling or what symptoms or side effects are bothering me at the time.
So, really, my big secret for getting what I want from my doctor — or having a relationship where I can lay that out — is no secret at all. In fact, I’m pretty sure we all learned it in kindergarten: Treat people as you want to be treated.
(Photo via We Heart It.)
When I asked my pharmacist how to go about doing it, she said she wasn’t sure. Apparently, she decided to call a friend who worked at some clinic, and she said to just inject a dose’s worth of air into the bottle and then go about my business.
So, I followed the instructions: I washed my hands with soap and warm water. I cleaned the area I was going to inject (my thigh, in case you were wondering). I injected half the dose’s worth of air into the vial. I pulled out the dose — which, incidentally, I’ve decided to nickname The Yellow Dart, since metho is yellow and the CRA kept referring to the syringe as a dart.
As usual, I had to make a few practice runs before jabbing the needle into my subcutaneous layer. This comes from when I injected Humira, which hurt like crazy. This was before they had the auto-injector pens (which I used for Enbrel and prefer), and it was always a dramatic affair for me to inject it.
Anyway, once I got through that, The Yellow Dart didn’t sting anywhere near as much as Humira or Enbrel. It doesn’t look like I’ve got any site reaction, which was immediate with the biologics. We’ll see how it goes, though. I’m hoping the horrific, gaping mouth ulcers don’t make a reappearance and that I don’t get any of the nasty side effects. I guess we’ll just have to wait and see.
The newest edition of the Chronic Babe blog carnival is up! Here are some of my favourites:
Pain killers. I knew there was a reason I didn’t want to take them. You know, other than the whole addictive potential thing.
Saturday night I was not doing well. At all. After about two hours of tossing and turning, wishing more than anything I could get to sleep, I decided to take half of one of the pain pills my nurse practitioner prescribed for me. This oxycodone, which was supposed to only last 12 hours, left me feeling exhausted and nauseous all day Sunday. I slept more than I was awake, because being awake meant I had to struggle not to throw up. It was a great day.
Now, I’d had this reaction before to Tramadol, which Dr. Jerkface prescribed for me, even though I had told him I didn’t want to take a pain-killer. He prescribed it, told me it was just a stronger NSAID and then ignored my calls for a week or two as my joints steadily became more painful. It was a bloody miracle when he magically phoned me back when I agreed to take it. It, too, make me feel violently ill, though not nearly as fatigued as the oxycodone.
Well, lesson learned: Next time I will stick to my guns and not take whatever opiate the doctors prescribed. I’d rather hurt than feel the way I did yesterday. Blech.
So. I had to quit my second job two weeks ago. I wish I could say it wasn’t because of my PsA, but it was. The short version is that we both drew lines in the sand and were unwilling to deviate for them. The only course of action left to me was to quit.
Still, the long version has more shades of grey than that quick paragraph would suggest, as it often does. So, without further ado, the long version:
I have worked my second job, a part-time retail endeavour, for more than a year. I had PsA when I started — hell, I started flaring the first time while working at a different location in the same chain — but if it wasn’t in remission, I wasn’t doing nearly as poorly then as I am now. I was able to work then pretty well, and, because they knew I worked an additional full-time job, they tried to give me at least one weekend day off per week.
Then, fast-forward to the holiday season. I applied for and was given a holiday promotion, allowing me to act like a lower-level manager from November through December. There were two others, in addition to me, were given the additional duties to, for example, to count cash registers, deal with unhappy customers and support associates. Unlike the other two, however, I didn’t get a weekend off while doing that. I worked from Thanksgiving to Christmas with no days off.
That, obviously, took its toll. Like anything else, I got through it because I had to; I didn’t give myself a chance to think about what it was doing to me. Once it was over, though, I started flaring. My Enbrel stopped giving me relief. I was exhausted all the time. Eventually, about a month or so ago, I had to tell them about my PsA. At the behest of another manager, I wrote the store manager and assistant manager an e-mail, saying in no uncertain terms that I had to have one weekend day off per week or I wouldn’t be able to continue working there.
All went well for about a month, with the assistant manager making the schedule and giving me Sundays off. I had time to go to church, see my husband and our pets and recover. But the store manager apparently hadn’t read the same e-mail I’d written; she made the schedule one day and signed me up for two nine-hour shifts, including one on my beloved Sunday off. I had to tell her that wouldn’t work for me; my health is worth more than $8 an hour. She said she was unable to give me Sunday off all the time; if she gave it to me, she said, she’d have to give it to everyone. (Which didn’t make sense to me; I had a medical reason for needing it. I’m assuming not everyone working at the store has a chronic illness.)
So, I quit. And now, two weeks later, I have nights and weekends free (for the most part).
Still, I can’t help but feel this was mostly avoidable. I do feel some responsibility for the way things worked out. Maybe if I hadn’t allowed them to get the impression that I was healthy enough to work 14 days in a row this never would have happened. Maybe I am to blame for the way things fell out. But I’m not sure. I do know, though, that my body was telling me loud and clear that it could not handle nine-hour shifts, double-digit work days and no days off. Hell, some days, I can’t even handle my full-time job.
I guess I’m still learning my new limits, my new normal. It was nice to pretend for a while that I could be Superwoman, but, as usual, PsA didn’t allow me to maintain that illusion for long.
(Image via We Heart It.)