Thursday, March 12, 2009


I feel panicky and sick at my stomach at times. Realistically, can I work a full-time desk job? I don't know. Actually, I'd say probably not or not for long, though I am in better condition than I was in August when I quit my other one. I am a worrier and just far more worried than the last time around.

My dad says that some companies will be interested in hiring people with disabilities and need to but I didn't think so. I thought they just get a tax break on any expenses for accomodation.

I had an already scheduled appointment with the pain management doctor. We're apparently doing all we can with pain meds for now. I mentioned seating issues and he asked what he could do to help; I was thinking seating clinic or cushion advice but then just said, "I don't know" since I can't afford another cushion for now. With a job change, yes, eventually. Good wheelchair cushions cost a lot. I have pain from my ischial tuberosities and on my rear pretty fast and on my skin if I wear certain clothes and sit on the scooter long. I get ischial pain even without the scooter and always have; a lot of seating is horrible for me. Denim seems to work best though that's not for an office; some thicker fabrics may help. I can alternate between bringing my own chair with me and sitting in the scooter, though if I need up and down frequently I need to just sit in the scooter.


yanub said...

Maybe there is work you can do from home? Some places farm out their phone work.

Was it William Peace who was saying he gets his foam cushion custom made for $25? It's an outrage what medical suppliers charge, but there's no law that says we have to get our needs met through them. We can go around them at times.

FridaWrites said...

There are some jobs I can do from home, but they are far fewer than the jobs I can do in an office. Doing less than 20 hours a week in an office would be ideal, also for the kids since some of the jobs he's applying for have very long commutes (we'd move eventually, but that would mean I'd need to be there more).

Yeah, $275+ would be a lot to spend. Foam comes in different densities and thicknesses--I need a lighter density than I have. Good thing is I can take mine out to compare.

william Peace said...

Yanub, I get my wheelchair upholstery made for $25. I am stuck purchasing one over priced Roho cushion after another. They prevent sores but cost over $300 and last about a year, 18 months at most. At this point I am forced to set aside money every month knowing I will need to buy a new cushion yearly. Insurance will only pay for a cushion if "medically necessary". That means being hospitalized twice in a calendar year for a pressure sore.

FridaWrites said...

I do feel pressure points and skin pain though I move to the couches/chairs at home and can reposition myself. I really also think that I would need a good wheelchair cushion for working or I couldn't do so long or would be in agony afterwards. Actually a good wheelchair cushion might allow me to work a lot longer hours, though I can't be certain of this.

I'm going to talk to vocational rehab people this week. They may have some suggestions.

D Phoenix said...

Whoah, I haven't been online much and I just got caught up with you. I'm so sorry your husband lost his job. Damn, that's so stressful.

I'm glad you're going to talk with the vocational people. Perspective is an important thing. Weren't you thinking of going on a disability pension awhile ago? Is that still a possibility for income assistance? I don't know about the US system, but here you can get assistance and still work a bit for extra income. This way, one can get regular monthly support, medical costs covered and then work when you can to bring in additional funds.

As a fellow worrier, I know how toxic that can be. Getting outside advice and getting stuff out of your head as much as possible is a good thing.

I'll be thinking of you and hoping that your husband finds something soon.

Lisa Moon said...

Hi, Frida, Sorry I've missed some posts... was behind and also realised that it's not that YOU haven't been writing, it's that my blog following thingy didn't show your name in it and I'd started using it to catch new posts... silly me, since you're on my main page under Blogs I Love to Read!

ANYway, GOSH, I am SO sorry to hear about these stresses. Ugh, looking for work is so hard at the 'best' of times and usually - since you're looking for work - it's not the best of times!

Yanub is right: it's shameful and almost criminal what medical supply places charge. Also, having recently been ordering some of these very items myself, I'm tired of reading brand names from the 50s like "Invacare". HELLO, NOT AN INVALID, thankyouverymuch.

So yeah, if you can get something suitable elsewhere, YAY. I think it's sick to have to pay THOUSANDS of dollars for a CUSHION. I mean, REALLY, is it made from solid gold?!

I second what Donimo says about both disability assistance and, even more importantly, combatting the stress you're both under - especially by getting out in the fresh air. Make it a goal, perhaps go for a stroll/roll together?

I say this with affection, not to be pushy; I'm in a similar boat, in a way and am cheering you on. Just so that's clear. :)

FridaWrites said...

Funny you say that--Invacare was the brand of wheelchair and scooter I first tried and I was rubbed a little wrong by the name too. That's why I like the Amigo name--it means friend (seriously, I don't get paid by them, maybe I should see :) ).

Well a lot of design and testing goes into wheelchair cushions and other products, research into reducing pressure points or other problems. But you're right that they're out of our budget, especially since so little is paid for. Sometimes there are grants for this kind of thing--I may actually qualify now.

Nothing makes me feel better than being outdoors. With some great spring weather, it's good to be out periodically. We took the very happy dog to the park and I raced the kids on their Razor scooters with my scooter--we had to slow down on some sharp curves and hills though. The dollar theater, seeing family and friends, going to feed the ducks are good breathers.

Realistically, I don't know how I can work full-time and cope physically with most jobs, unless it's one that's half-time from home (there are jobs I could do this way, it's just they may not be available right now). In the US you can also work part time some while getting disability so I may be able to do that. Disability and part time work would be half or less what I could make full time, but it would help. I'll also talk to the vocational rehab people about this.