Tag Archives: Disability

A Day of Arguing with Myself

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It’s only midday, and already I’m sick of arguing with myself. I just had to look up the rules for capitalization in titles because I couldn’t remember if I should capitalize “with” or not, and it was looking like something else I could spin my head around indefinitely. Thank goodness for Google.

My major arguments this morning have been on two subjects. First, I woke up feeling not-great and not-miserable.

[Side Note: If you don’t have chronic pain, and you woke up feeling like I woke up feeling this morning, you would probably call in to work and/or get a loved one to take you to the hospital, but my definitions of not-miserable have undergone a radical shift in the past few years. You’d be amazed at what a person can be happy to live with after enough practice. I don’t say this to make you feel sorry for me, or bad for complaining about your own stuff. I actually feel–I guess you could say that I feel reluctantly honored that the universe has bestowed this lesson of what I am capable of getting out of life upon me. I’ve been able to pare away some of the fluff of existence and get down to some of the more important things, and learn to not get as worked up about some of the less important things. I can’t say that I’m any happier than I used to be, although perhaps that will come. I can say I’m not as unhappy and I feel like my life has more reality to it, even if I do struggle with my sense of purpose at times. Get back to me in a few more years and perhaps I’ll be able to make more sense out of this than I can at the moment. =-)]

So my day began with what has become The Consuming Question lately–how much pain medicine should I take? As you may remember, I recently tapered off of morphine, started taking vicodin as a maintenance painreliever instead of a breakthrough painreliever in order to cope with the pain of coming off the morphine, and then began to taper off of the vicodin. This is not a function of addiction, by the way, just a function of the way one’s body adapts to having high levels of opioid medications in one’s system, and while I am blessed to not feel the need that an addict feels without his or her substance, the pain of being deficient in opioids when one’s body has added too many opioid receptors (also known as withdrawal) is bad enough. Honestly, I have no idea how an addict ever manages to quit.

Anyway, I had agonizingly inched my pain reliever levels down to four half-pills (of an extra-strength dosage) by the end

English: Vicodin tablets Italiano: Pillole di ...

of the MLK 3-day weekend. Since I had gotten stuck at five whole pills for about five weeks, this is encouraging, but I really want to have a chance for my body to get accustomed to ZERO added opioids–that way, when I do have a pain flare or a bad day, taking a vicodin will help a lot instead of barely at all. So this morning when I felt not-miserable, I thought, “Hey, maybe I can just stop taking all my pills and be done with this in about 3 days!”

Of course, I’ve tried that before, and it’s never worked–inevitably, if I drop my dosage too much, I end up getting a CRPS full-body flare from the withdrawal pain, and having to bounce back to an increased dosage just to manage the flare, generally always settling back to exactly where I was before. But it’s just so tempting to try and get it all done with so I don’t have to keep inching down the dose, dealing with the withdrawal pain for 3-5 days, not being up to do much of anything for quite some time after that, and then doing it again. I’ve been at this for about 4 months now. It sucks. I am ready to get to the part where I get to have some good days, and can effectively treat the bad days. I’m past ready.

So the morning was spent getting more and more painful, until midday when I was about to be down two halves instead of just the first one and I decided if I skipped the second as well, I’d never make it to my early evening appointment. So–I may be able to get down to three halves without too much trouble, or I may have to bounce back to four, but no cold turkeys–or even moderately chilled turkeys–for this cat today, and possibly a wasted morning. Ah, well.

The other subject on my mind for debate this morning was this Coursera class I’m signed up for. It’s on fantasy and science fiction and looks really interesting, but it requires a novel worth of reading and an essay every week. I went for it in the first place because even if I quit or decide not to do the homework or whatever, there won’t be any negative consequences–the courses are free, and if you don’t pass you just don’t get the Certificate of Completion (which doesn’t count for a whole lot anyway–it isn’t college credit or anything). But not having much to lose, while it did make it easy for me sign up for the course, also makes it easier to quit, and I think about quitting daily. I’d like to prove to myself that I can still accomplish something like this, despite my disability. But I also know that this might not be the right time to do it, or the right level at which to start (there are lighter-workload classes on the site). At the moment, I haven’t quit yet. But I feel like it’s going to be up in the air for the 11 weeks of the course, and all the deliberating whether I should give up or not is already a bit exhausting.

I’ve had similar thoughts about this blog, to be honest. I’m kind of an expert at starting projects and then wandering off to something else without finishing them. But the other bloggers on my reading list and the bloggers and non-bloggers who read Attempting Perfection are really important to me. My blog makes me feel like I’m making a contribution to the world, and while I may not be able to be as consistent about posting as I would prefer, this is something that is flexible enough that I can do it, disabled or not. And I still have things to get out there about pain, life with pain, and what we can do about it.

So the blog, I’m sticking with for this year. My little pipeline into the bigger world. And the rest I’ll just have to take one day at a time–just like the rest of my life. Keep on keeping on, my friends! See you soon.

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Big Little Victories

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Chicken soup is a common classic comfort food ...

I made chicken noodle soup today. I use two commercially prepared ingredients (broth and frozen chicken breast) (well, and the noodles, but who makes home-made noodles these days?), so it is a pretty simple recipe, but home-made chicken noodle soup is a significant step forward in my ability to be active. It has been months since I’ve been able to really cook, and I have missed it. That I got through an entire recipe makes me very pleased, for many reasons.

One of the things I find difficult about my disability is the loss of independence. If I’m going to have a home-cooked meal, a lot of times, I need someone to cook it for me. It is a wonderful feeling to be able to prepare my own healthy food, even if it is only occasionally.

Another aspect of disability that I struggle with is that I used to contribute so much more to the work of my household than I can now. It feels wonderful to cook a meal for my sweetie that will feed us with leftovers for a couple days. It makes me feel like I have an important role to fill in the household. My disability is teaching me that I contribute to my household in ways that are not based in physical labor, and I am learning how to find my importance in those other contributions. But the lesson is made less harsh when I have the ability to at least occasionally pitch in in ways that are the “instant gratification” contributions like cooking and cleaning.

Finally, being able to cook for myself gives me more control over my diet, which contributes to my health. This day of cooking gives me hope that I’ll be able to eat a little more healthy as I continue to recover from my medication changes, instead of needing to eat so many quick-and-easy prepared foods.

So, even though I’m rather exhausted now, I am extremely pleased with my victory of progress today. My disability has given me a new appreciation for something I used to enjoy at times, but at other times find tedious. Hello, chores! I am happy to be able to do these little tasks now. What a lovely gift of perspective, hard-won though it may be, to have appreciation, mindfulness, and joy in these daily tasks.

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Waste-of-Time Meditation

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As anyone who has ever gone through a convalescence knows, it can be difficult not to jump ahead in the healing process and feel ready to take on the world mentally before the body is truly ready. Lately, the sheer amount of passive entertainment I’ve been taking in has been feeling more and more like an enormous waste of time.

This is a good sign–sort of. It means that I have enough extra mental energy to fret a bit about how I’m spending my time, which means I’m feeling better than I have been the last couple months. I’m in that middle phase, wanting to be able to do more, but not doing it. My kitchen table is piled with sewing materials and patterns, but I’m still not ready to get down to sewing.

The mindfullness training I’m doing be meditating is helpful here. I have two new complimentary projects I’m working on right now. First, is to come back to now. Right now, I am recovering from the last couple months, and if what I feel up to is watching television shows or reading novels for most of the day, it is what it is. I was really fighting this until my lovely yoga therapist assigned me to refocus on accepting my current activity level, and even accepting the resistance I feel to that. So I pause for acceptance through the day.

My second assignment was from my fantastic psych therapist. I’m to spend 10 minutes a day really getting into the feeling of what a waste of time it is to do what I’m doing. To meditate on it and explore it. And then, to put it away until the following day. Ten minutes, no more, no less.

This exploration has been interesting. I’m feeling much more peaceful in general, and discovering some “kinks” in my thought patterns that mean I’m harder on myself than necessary. Again, it comes down to me being grateful to be exactly where I am, learning and growing and healing. It’s hard work, and it’s important work, and I’m grateful to have some excellent teachers in my life, at the right time for it to do me good.

Disability and Grief

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Aquarium cleanup

Aquarium cleanup (Photo credit: Cochonou)

Before my injury, I had an amazing job. I worked as an aquarist, which is a zookeeper for fish. I got into this career because I loved animals, but I was allergic to most of them! The ones underwater, however, didn’t make me sneeze. I have fed mola-molas, stingrays, moray eels, sand tiger sharks, zebra sharks, nurse sharks, and white tip reef sharks from inside the fishtanks. There’s a youtube video out there of me inside the tanks in the Staten Island Ferry Terminal helping get it set up, and I’m in countless family photos from my time in the water in Spain and Guam. I’ve wrestled sea turtles and sharks for medical treatments, had baby walruses suck on my fingers, and trained a fish to kiss a target on a stick in the water just like how they train dolphins and sea lions for shows. I saved the lives of many animals by noticing and fixing mechanical problems before they were too late, and I did the research and work to extend the lives of animals from electric eels to jellyfish to octopuses by finding out how to take care of them better. I’ve gone into the tropical sea and helped catch new animals for the aquarium, designed exhibits, and diagnosed and treated sick fish, worked feverishly and daringly to save sick and injured animals, rejoiced when they healed, and cried when animals under my responsibility died. In the 7 years I worked in aquaria, I chopped tons of seafood and cleaned square miles of aquarium windows and backdrops.

I went to school two extra years to get into this career, and I worked my butt off in school and in every job I had after school. I was pretty good at what I did, and was always working to become a better fish keeper in any way I could. Before I was an aquarist, I drifted a bit–I majored in biology, worked in a microinvertebrate laboratory, almost wrote a groundbreaking paper on slow loris behavior but got distracted, worked doing field research on playground bullying, and then ended up working phones and reception for a major hospital. I made some of the best money I’ve ever made at the hospital, but I never felt like I was making enough of a difference, and my aquarist career was like finding my life purpose.

Then, on July 5th, 2009, as I was wrapping up for the day, my shoe got caught in some stairs behind a tank and I stumbled down the stairs, twisting my ankle hard at the bottom. I heard something snap. It hurt a lot. There’s another post about how I slowly lost my career and then my ability to work at all to the CRPS that developed from my injury. But when I say I lost my career, I lost something that wasn’t just an acceptable way to make a living. I lost my vocation, my daily love, my purpose in life. Something I had moved across oceans for three times. Something I had given up a relationship to learn how to do. I lost something so precious to me that even writing this right now brings tears to my eyes. I lost, not the 7 years of my life that I threw myself into heart and soul, but I lost the reason for doing so.

Before my injury, I liked to dance. I took hip-hop in University and was in a little modern dance troupe,. While I attended aquarium school, I sang and danced in the chorus of several local musicals. I have been a singer since I was a little kid, and when I moved to Guam, I sang jazz in some of the bars with the local bands on weekends.

Before I got hurt, I would go snorkeling on Friday mornings and take pictures (or try to) of the amazing animals I’d see. I would drive around the island and stop to take photos of the things I found beautiful. I went hiking sometimes, too.

Before I got hurt, I would go on dates with my sweetie. We liked to travel and find ways to enjoy trips together with our opposite traveling styles. I went traveling alone quite a bit too.

Before I got hurt, I would sit at my computer for hours, designing web pages, writing poetry.

Now, if I sit up for more than an hour or two at a time, I start to hurt too much and have to go lie down. I can’t pick up and hop on a plane when the tickets are on sale, walking the foreign cities I love to explore. I rarely go out with friends or on a date. I don’t snorkel or hike much, although with careful planning and luck of a low pain day I can manage something that doesn’t go too far or take too long, as long as I have someone to go with me. I can’t stay out late enough to sing at bars, and I don’t jump or dance anymore. It’s hard to imagine having the energy to be in a musical.

And I’m not an aquarist. I’m not a chemist. I’m not even a receptionist. I’m disabled. Is that who I am?

I have lost so much. For a long time, I didn’t know what I had left. I didn’t know if I had enough left to scrape together a me. I didn’t know who I was now, without the things I used to do. A lot of people with CRPS (and with other chronic pain conditions) commit suicide. It’s not hard to understand why, when we’ve lost so much of ourselves we aren’t even sure who we are anymore. One of the first things a stranger asks to get to know another is, “What do you do?” What do you do when you can’t do what you do?

I couldn’t think about my loss, because every time I did, the negative emotions would make my pain flare. I went to see a therapist. I wanted to know how to move on. She first told me I had to grieve, and I tried, but it just make my pain so out-of-control that it wasn’t worth it. I decided I had to move on. I knew I wasn’t my job, or my body. I knew I needed to accept my new situation and make a new life, but even though I could think it through logically, I just couldn’t move past the feeling that I had lost myself along with the rest of what I’d lost to pain. I was stuck. I went back to the therapist and tried to explain more clearly. I was angry at myself for understanding what I needed to do to take the next step and yet not being able to do it.

I kept saying to myself, “Get over it already! It is the way it is, and you know wallowing is no good for you!”

This wasn’t working.

The therapist explained that without grieving, without acknowledging the depth and severity of what we’ve lost with kindness and understand towards ourselves for hurting, we can’t move on. You can’t bully yourself past the grief step. You just get stuck. And that is what I had done.

My therapist and I set up a safe time to grieve. I could stay away from my loss when I was at home, needing to cope with my pain. I couldn’t afford to grieve full-time. But I could do it part-time, every week, in her office. I had to honestly, mentally pat myself on the shoulder and say, I know, I understand, this really really sucks.

And the moment I gave myself the acceptance and kindness I needed, I started to be able to accept my new life, my new self.

I don’t think I’m done grieving. I think that I’m going to be grieving in little bits for years. Right now, I can’t go to an aquarium, but I expect that won’t last forever. That’s going to be painful and raw for a while.

But I’m also learning how to love my new life. And I can! I love blogging, I love sewing, I love love love yoga. I love finding other people with chronic pain and trying to find out if I know anything that might help them. I was empathic before, and I love that I can be a better empathizer now. And I love the kind of person that learning to live in the moment is making me.

I may get to do some of the things I used to do before, I may not. I probably won’t ever work in an aquarium again. That’s sad, but okay. I have great memories of the time I spent in that dream job. I’m ready to find a new dream. I’m feeling the oceans of possibilities open up around me for a new life that I love. I’m no longer in a rush to get anywhere. But I’m looking forward to seeing how this turns out.

Everyone grieves at some time. Treating ourselves with kindness and understanding instead of impatience and frustration is the only way to truly move through grief. We may worry that we’ll get trapped in the sadness and not move on–I know I had that fear. But it turned out I was bigger than that. I just needed to trust myself. I hope that by sharing my grief that maybe even that struggle will touch another person in the way they need to help them grieve. And if not, that’s okay too. I learned what I needed to from my experience, and that is one person that is the better for it. Everything else is gravy =-)

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CRPS and Working: A Personal History

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I thought today I’d talk a little about my experiences with working and having CRPS. First thing you have to know about me is that I am as obstinate as a mule, and I’ve put that to work for me in my career before with positive results. So, my default reaction to something that makes work more difficult, or even threatens my career, is to stubbornly work harder at finding a solution, often exhausting myself in the process. Before CRPS, this tactic had never failed me.

When I sprained my ankle, I was working in my dream career field. I was an aquarist, which basically means I was a

Specimen of Acanthastrea lordhowensis photogra...

zookeeper for fish (and other aquatic animals). I had attended two additional years of school for this career after my Bachelor’s degree, and had interned at an aquarium in Spain, and then worked in New York City for several years before moving to Guam for a new aquarist job with a greater range of job duties. One of my favorite parts of my aquarist job in Guam was the health care side of fish keeping, in which I had a lot more responsibility since there was no dedicated veterinary staff on site.

Even getting into aquatic animal husbandry was a benefit of some obstinacy on my part: I was a person allergic to the dander of every animal with hair, fur, or feathers. But animals were my passion, and I harnessed my stubbornness and found an animal husbandry career that didn’t aggravate my allergies because the animals were all wet!

So here I was, in an extremely physical job, with a sprained ankle. I was put on “light duty” and kept myself busy doing paperwork, advising or overseeing the people assigned to take care of my assigned animals, taking on extra duties in the laboratory doing water quality testing and measuring treatments, and even ended up helping with billing and stuff for the curator, working in the education department. and doing some program and exhibit design. Initially were some parts of light duty that were interesting or enjoyable, but I missed my job and having to try to direct someone else in doing it was hard. But light duty was supposed to be temporary. And my ankle kept hurting more and more, and I kept returning to the doctors looking for not only an explanation of why the pain was increasing instead of going away, but for treatment for my pain.

The first couple doctors responded by immobilizing my ankle further and giving me painkillers. I went from a wrap to a brace to a walking cast to crutches and a solid cast. I spent almost two months in a wheelchair. The stress of constant, ever-increasing pain made me increasingly susceptible to other stresses. I worried constantly about whether what I was able to do for my employer was enough for me to not lose my position. The pain medications combined with the pain

Wheelchair

made it increasingly difficult to calculate, to concentrate, to remember–to keep from breaking down in tears. My supervisor and most of my coworkers were extremely kind and supportive, but the company itself was going through some stressful changes and my ability to cope with the additional stress was minimal.  I was on light duty for almost a year. One of my light duty assignments took me out of my department, and I worked as hard as I could, increasing my hours. getting more and more stressed, and in more and more pain. I finally begged my doctor to return me to full active duty, forgoing medical protection of myself to get back into my department under my supervisor’s protection.

What was my home life like during all of this? What home life? I got up, went to work, sometimes there was PT or an appointment, went home, laid down in bed with my computer and TV. If I ate, it was because my sweetie brought me food. He washed all the dishes, did all the cooking and shopping and housecleaning and laundry. I couldn’t even take a shower without him. He’d drive me to work and pick me up to drive me home. Sometimes the old elevator to our 8th floor apartment stopped working. He bought me kneepads and I would cry in our car and then crawl up 8 flights of stairs on my hands and knees while he encouraged me.  I had some friends that would pick me up and  take me to our weekly game night and then drive me home afterward–that was the only thing I did outside my house that was not work.

When I got diagnosed, the doctor assured me there was no reason why I wouldn’t be able to keep my career.  Yet the constant pain, even with the new medications, kept increasing and increasing. I wasn’t managing my pain, I was just doing my best to medicate it away as much as possible and ignore the rest of it. It wasn’t working. And, as things got increasingly stressful at my job, I realized that doing this work was making me worse. It was a difficult decision to make, but I decided I needed to find a less stressful career. I went to work in a laboratory. Not working at all was not an option I was even willing to consider.

Chronic pain makes your brain shrink. I’m not saying this metaphorically, it is a scientifically proven fact that the

AAAS brain

human brain in constant pain atrophies away, something like 10% loss in mass–a huge amount! So I had pain, stress from pain, stress from trying to learn a totally new job, stress from what working was doing to my home life and relationship, and brain shrinkage. And yet, I was able to keep up with it for a while.  My new boss understood chronic pain and was flexible. I bought a small foam mattress, and would go lie down in my car for my lunch break. I moved to a nearer apartment with just one flight of stairs. I started taking a 2-hour break and going home for lunch.  I stopped going to game night–I was just too tired and in too much pain to get out of bed any day I didn’t go to work. Nothing helped enough. I had more and more trouble getting all 40 hours done in a week, and more and more trouble not getting emotional about every little thing. My pain continued to increase.

Finally, I had a big talk with my sweetie. All my friends had been telling me to stop working for quite some time, and we decided we could survive if I quit working, at least for a little while.  To be honest, even if we hadn’t had a way to scrape by, I would have had to stop working soon anyway, because I wouldn’t have been able to keep dragging myself out of bed and going to work. It was a miserable decision to have to make, but it was the only choice I had to salvage anything out of my life and keep myself from getting worse.

At first, I thought it would only be temporary. As I settled into my new “job” of seeing doctors, doing various types of therapy, and taking care of myself, I slowly figured out what it took to make life tolerable. To have the energy to get up and at least reheat my own lunch, make sure I get the walking that I need not to keep my position from progressing, and generally to take care of myself. And it finally sank in that it will be a long time, if ever, before I have enough energy left over from simply living with this pain condition and all it entails to be able to work again. Taking care of myself takes a huge amount of work, and even now I don’t do it all–I have my sweetie and others who help me. So I applied for Social Security Disability. And a couple months ago, my application was accepted. While it’s not a lot of money, it’s enough that we can stop using up my sweetie’s emergency fund, and I can pay for my treatments and such. And so I have accepted that my CRPS is a disability. There just is no amount of obstinacy that can indefinitely ignore a chronic pain condition.

Now, just because CRPS is a disability for me and for some other people I know, it doesn’t mean that nobody with CRPS can work. Some people may have a less severe version of the condition, and/or have better success at managing their pain. Some people may be able to work part-time and still maintain a tolerable quality of life. There’s a range amongst CRPS patients, like in many other conditions. What’s important is that the patient is still able to have a life AND work effectively. That’s not possible for me at this time in my life. I hope it is possible again in the future, but for now, my job is taking care of myself, and I’m going to do the very best job of it I can!

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