On pain

Everything’s been really up and down, and it’s hard to sit down and want to write about it without either feeling like I’m putting on a happy face or whining endlessly. Curtis’ promotion was awesome, but not at all what we were expecting. We talked about it for weeks prior to him accepting it, and went forward on the belief that the extra money he would bring in would outweigh his absence… without him here it’s difficult for me, and not just because it’s three kids and I’m lonely, but because I have a disability and chronic pain and I run down a lot faster. Much, much faster. The extra money would help me manage my time and spoons better; allowing for easier meals with less prep, putting the kids in extra circulars to help manage their energy…
But none of that can happen. I feel a little like I was lied to – not by Curtis, but just by the job itself. In the end the amount of extra money he’s bringing in per month is roughly $82, and his hours jumped from 7-8 predictable hours a day to working 10-14 hours a day and never being able to see him at all. The kids see him 15 minutes in the morning when he gets them up just before getting me up, and I see him about 2 hours at night after their bedtime when we’re both exhausted and heading to bed. That’s not enough for me. That’s fucking awful. That’s not worth this for $82 fucking dollars. We can’t do shit with $82 and a 500% increase on my physical and mental demand.
It’s put us just a hair outside of the tax bracket that gave us the full benefits, which means we now make something like $100 less monthly than we used to, and in the end that means this promotion has lost the household money. So I practically never see my husband anymore except on Saturday (his new day off, which is spent largely being zombies because we’re both so fucking tired) and we’re poorer than we were before. That isn’t what I signed up for, and sometimes when I’m really overwhelmed the future feels really hopeless.
Getting a part-time job isn’t as easy for me as it would be for others. For one, no one wants to hire someone who is disabled and can’t do shit (lift, stand, move around for more than 20 minute stretches, etc), I have limited access to transportation and the cost of commuting has to be less than what I’d make to offset it. Daycare centres in this city are so extremely overwhelmed that it takes, on average, 8-15 months to get an opening for a young child unless you’re lucky enough to have friends who can swap childcare with you (I don’t – all of my good friends don’t live in the city). If you go with “unregistered” daycare (like some woman running it out of her home) the subsidy for low income families only covers a portion of it, and what’s leftover to pay comes to just about the same amount of money you’d make at a part time minimum wage job. So you’d go through all that fucking stress, I’d put my body through absolute hell, have to up my pain med dose and deal with the fallout of running myself ragged, and bring home about $20 a month to show for it.

Would you do it?

I’ve had Z on wait lists for daycares for over a year now (roughly 10 of them). I received one call back roughly 3 months ago asking me if I wanted to stay on the list for next year or be removed. So really, “go find work” is not as fucking easy as people wish it was.

It’s depressing because my pain is already getting worse just from the increased demand from Curtis’ work schedule. The progress is slow, but it’s noticeable. Even back when I was pregnant I used to be able to walk up to the mall in the summertime: a 30+ minute walk there and back, and only need one dose of breakthrough meds and a two hour recuperation period to get through it. Now I can barely walk to the library and back (15 minutes) without being in agony for the next 6 hours. I tried to talk about it with my specialist a few visits ago, and his response was a very depressing, “That tends to happen” or something similar. Thanks, man… that’s just the boost I needed. These last two weeks the nerve pain in my leg has come back, to the point where I’ve scheduled another cortisone shot in my spine for this Monday (the ones that I faint over, some readers may recall – that’s always fun). My next option for treatment is biologics, but they range anywhere from 10 to 40 THOUSAND DOLLARS a year, and while our medical plan is pretty good it doesn’t cover 100% of those kinds of treatments. And seriously, we couldn’t in a million years be able to cover even 10% of $40’000. That’s fucking insane. Biologics don’t cure the disease, but they can put it in remission which can in turn help control some of the pain. I would still need all my pain meds, but it may help stop it from getting worse for a while. That would be amazing, but it’s a world away at this point.

I ran a few days short on my pain meds two weeks ago due to the nerve acting up again, and when I called in to have my next round I got a really confusing explanation of how my prescription works because of the fucked up way my doctor wrote it out the last time.

For those who don’t do this every day, this is how it works:
When you take narcotics or opiates or other “controlled substances” for disease or pain management, the BC Pharma system has a very specific way of controlling that. You never, ever get your entire prescription given to you in one go. Ever. This is for your own safety and to ensure there’s less likelihood of abuse and/or selling it for those who are down that path. Your script given to you in stages over a timed period, not generally by need for it.
For instance, I have to visit my pain doctor once every six weeks for a check-up (and because of the meds I’m on, a required urine test for drug use and to ensure the drug is present in my system so I’m not selling it – it’s weird but it’s part of the rules, my mom has to do it to as she’s on the same treatment for the same disease) and at this check-up I get my prescriptions refreshed. I bring them in and they automatically overwrite any remaining leftovers from the last one (for instance, if I only got 2 out of 3 of my breakthrough meds in the last 6 weeks, that third fill goes away in a puff of smoke and gets overwritten by the new script). I was previously under the impression that because my breakthrough meds are split into three equal parts, I can get them refilled once every two weeks (2+2+2=6, for the 6 week visits)… but learned that’s not actually the case. My doctor has been mistakenly writing it out as “1 tablet 2x per day” rather than my actual dose, which is 2-3 pills as needed (not generally on a daily basis, just as needed). So, because of this, they will only push the 1/3 of the script once every 25 days. 25+25+25=75 days, which is 10 weeks… this does not equal six weeks, which means there’s no way I can actually receive my entire prescription during the time I have been allotted for it.

What the fuck?

Generally this hasn’t been a problem. I’ve gone about 3 years and run short literally once. During that time I’d never, ever get my doses given at two week intervals (I’d call them in as needed once I ran out/low) and usually had so much left over that I didn’t even get my last 1/3 filled before my six weeks was up. I just didn’t need it that often, and despite how it’s written, I never take my breakthrough meds on a daily basis because it’s too easy to build a tolerance and that would make it useless.
But… the last year or so my disease has progressed significantly; much more than it has over the last many years combined, something both my pain specialist and rheumatologist have commented on. There isn’t really anything we can do about it… sometimes that happens despite your best intentions. But this means I go through more breakthrough meds than I used to due to dramatically increased pain, so in the last 6 months I’ve run short about 3 or 4 times (meaning, I needed it refilled at a 2-3 week interval instead of 3+ weeks). My pharmacy is amazing and care a lot for their patients, and in cases like that they often do things like pull 10 from the next partial and tack it on to the last one to help a patient get through a weekend until they can see their doctor or something, but I really need to talk with my pain doctor about the way he writes this shit out because it’s total crap. He’s given me a supply that he believes will help me and then writes it in a way that I literally can’t use it as intended. Seriously what the fuck.
So then I’m left running on constant anxiety attacks because I count how many I have left, see that it’s 15 or so, and freak the fuck out because I’m in excruciating pain and don’t want to take anything for it because I’m afraid of running out “too early” and being left with nothing. Either I can treat the pain appropriately and run completely out in 2-3 days – meaning either the pain burst is treated properly and gets under control, or the pain burst is not treatable and continues past that point – or I can treat the pain half-assedly and be unable to do shit for the next 1-2 weeks, live in constant agony, without sleep, can’t eat properly, can’t take care of my house or play with my kids properly, but at least I didn’t run out too early!
This is the kind of shit you have to think about every fucking day when you live with a disease and suffer with pain, because taking medication is so stigmatized that it isn’t as easy as just asking for more. Even if my specialist understands (which, generally he has) I am trying to crawl out from under this immense societal pressure that I’ve swallowed over years of this that says I cannot take medication or else I’m a junkie. If I need an increased dose, that’s bad. If I take what I need to take care of myself, that’s bad. It’s better to live in pain and watch your entire life fall apart around you in misery and horrific, nightmarish agony than to medicate appropriately and safely. It isn’t as easy as simply knowing that isn’t true; when you’ve swallowed that bullshit for so long, it’s hard to give it up even when your life very literally depends on it.

Living in constant pain is horrific. It tears away at every shred of happiness you have, it seeps into every activity you do over your day from taking a shower to preparing a meal. It pulls at you when you try and play with your kids, when you smile and laugh, when you make plans and break promises. You see it in your children’s faces when you have to give them another “no” when they ask to sit out in the front yard with you, because you don’t know if you can get up and down the stairs or sit on the ground for even 10 minutes without suffering enough to not be able to withstand making dinner that night or getting up tomorrow morning and getting them to school. And every time you reach for the medication you’ve been told, ordered, begged and pleaded with to take when you need to so you can bring your quality of life up to a “barely livable” level for a few hours you’ve got a crowd of people circling you like vultures telling you how much of a fucking junkie you are if you do it. Like it’s “giving in”; being weak or pathetic to treat your disease and be a human being for a few hours.
Sometimes the whole thing just wears you down, and the armour you’ve spent so many years crafting feels as thin and useless as cobwebs.

Tonight it hurts, just as it’s hurt for a week or more. I’ve lost track of how many days my leg has been on fire. My (general, not specialist) doctor told me to call immediately if I ever needed another shot and he’d fit me in, but his secretary pushed it for four more days because it was easier for her, and I’m so worn down that I didn’t fight. I don’t know if I have enough breakthrough meds to get through four more days plus the additional 3 that it takes for the cortisone to start to work… but it doesn’t really matter, does it? So instead I take another handful of medication (2-3 maximum strength robaxacet, 2 maximum strength tylenol, 2 maximum strength ibuprofen, 1 of my breakthroughs even though I’m supposed to take 2-3 = a goddamn handful that does jack shit for this level of pain, but hey at least I’m not crying in a corner all night) and wash it down with some gin and hope to god it gets under control enough to get up tomorrow and walk the kids to school.
But hey it’s all cool because I’m just a junkie who takes pills for fun. Because this is such a fucking great time.

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