Thursday, April 15, 2010

Get Your Boobies Squished Again, Roll-a-Ramp, and Wheelchairs Are Easier?

The Callback
I received a mammogram callback (or two or three--I didn't have the money up front for a follow-up) and letter and, is it horrible that my *first* thought (and second and third), was "oh, no, I can't afford this?" I have microcalcifications; when a baseline mammogram is done and these show up in some patterns, the radiologist has to make sure they're benign--lots of women have them and they're benign, like 80% of them. These are bilateral, which in my mind says more likely to be normal for me rather than cancer developing in both. So, more detailed imaging tomorrow now that we finally have the medical reimbursement account card, a biopsy if the shapes of the microcalcifications are irregular. Even if they're not normal, that's a stage zero breast cancer (ductal carcinoma in situ) and often requires only removal of the local spots. Yay, early detection. I started my career in healthcare and am worried about much more than how much a potential biopsy that would likely be normal would cost me out-of-pocket.

But umm, yeah, could I have something come back normal, ever? Seriously?

(My fear: at some point, I'm going to lose all credibility with everyone with the health issues. I haven't until now told anyone but a few people.)

Recent Wheelchair Van Issues
The wheelchair is lovely and reduces pain--I can go out for a long time on weekends and be up and around the house a lot more. It does not work well with the platform lift and exceeds the weight capacity slightly. While my husband can pull up on the lift so it's not doing so much work (he's strong), it takes an extreme and exhausting effort on my part to get the wheelchair in and this is not good for the lift. Procedures just to position it on ramp:
-open hatch with remote
-lower platform with control
-raise footrests so they don't scrape the bumpers on the lift
-take chair out of tilt and recline
-drive wheelchair onto ramp (repeatedly--the first bumper that holds it in place causes the casters to go out of alignment and often, the back casters to go off the side lip of the ramp; since this is a small space, they don't line up easily on it to go over the second bump)
-drive wheelchair far enough forward on lift so it can go in car (to exact spot)
-lower footrests and flip them up
-start reclining seat back some
-remove left armrest from holder and flip front armrest support forward so it will support the joystick against the frame
-stand up and remove headrest from wheelchair
-raise lift and wheelchair to knee high with power control
-attach webbed straps/hooks to secure wheelchair to platform (if it shifts off the platform, all 386 lbs. it actually is, holy cow!, it will shift some). (wrestle/fight, with arthritic hands, to loosen and tighten straps)
-remove attendant control from near headrest
-recline wheelchair back to exact angle to fit
-use control to guide wheelchair/lift into van until gears start grinding
-push like hell on the lift/wheelchair while using the control, pushing underneath wheelchair with shoulder, to get lift to push it into the van
-if wheelchair is placed slightly wrong on lift, start whole process over; all steps except headrest must be redone since wheelchair won't drive in extreme recline
-if third time you've tried to place wheelchair on lift, cry (cursing comes on round 2)
-nestle attendant control where it can be reached/won't get squished
-stow headrest so it's not a potential projectile
-use car remote to close van door
-scream if van door doesn't close; plus 50 points if it was just a strap sticking out

You can probably tell this isn't good for me or very possible--while I can make it through an appointment without pain (yay!), the pain from putting the wheelchair on the lift afterwards, well--it's like I ripped my right shoulder from my socket like Grendel seized by Beowulf. For now: scooter when I must do errands by myself. The wheelchair does help with ADLs and is completely worth it--this is a temporary hurdle that can be solved, even if I need extended family or friends to help with a manual ramp when I go places during the week. Now I can get out and do more--the wheelchair makes it possible for my body to cooperate. And we've had some good weekends because of it.

I'm also worried about safety while spending this much time at the back of a car, especially at the end of parking rows. It worried me on the scooter too, but this is way more extreme!

Putting the scooter on the lift goes like this:
-open back hatch with remote while zooming up on scooter
-grab platform remote and lower lift
-zoom up on lift
-raise lift, usually don't umm, bother with straps since it's not going to go anywhere (the lift arm blocks it from being thrown in an accident)
-close van door
I don't have to stand long or walk far, though getting in and out of the car several times (short errands) is very difficult because of multiple transitions/transfers.

Putting the wheelchair on the Roll-a-Ramp should go like this:
-open side door with remote
-lower ramp with button
-use attendant control to drive wheelchair up lift (and turn it?)
-use straps on wheelchair (ouch, spine--reachers/grabbers?)
-raise ramp
-close side door

Strangers do stop and ask to help and insist on helping, and I let them--this beast is enough to tackle gladiators. Even elderly people will stop and ask (though I don't let them). Except once, where I finally had to ask someone else.

The advantage of the platform lift is that I can see out the back window much better than with the scooter since the wheelchair is reclined. My only concern with the Roll-a-Ramp is whether it will be too steep for me to get it in or whether the wheelchair will turn easily inside (would give us more room for the kids on the back row of seats, which will be back up when the platform lift is removed). Oh, yeah, and reaching any straps. (Q-straint versus EZ lock?; there is a cost difference). Straps are a necessity here--the kids don't need a wheelchair in their faces if there were an accident.

So we are looking at a powered Roll-a-Ramp instead as a temporary measure and trying to plan ahead for a used conversion van in the long term (we can't do this now). Let's pray this Roll-a-Ramp works for our needs!

Why the hell didn't we buy a 2- or 3-year old used conversion two years ago? The monthly payment wouldn't have cost us more than adding a lift to a newer leased van, if you divide the cost of the lift over several years, and it would have made it much easier and safer for me--and we'd own it. Both naive and overly optimistic, I guess. We may still consider moving to an area with good public transport at some point.

I've been dealing with a lot of paperwork and phone calls recently, insurance and finances and taxes, and well, it's good to have an income and be in our house. And it's good to be out and about on weekends and up in the house doing more.

Using a Wheelchair Is Easier?
I'd love to whap anyone with a wheelchair manual who says that using a wheelchair is easier than walking. I'd love to show them the far greater efforts just to boil Ramen noodles and how much more work that requires, what an extreme effort it is to make a meal from a wheelchair. How difficult it is to get a wheelchair or transportation or to transfer.

One of my doctors (not my rheumatologist) said last year it's just easier to use a wheelchair than to walk, that people become lazy and use them the same way they do with TV remotes rather than getting up to change the channel. Now that I'm up and around more, I am continually noticing (as I knew from scooter use) that it's not easier than walking at all--if I were to be lazy, I'd walk rather than use the wheelchair, though that would cost me in extreme pain and in ability to get around for long.

No, nothing about using a wheelchair is easy, from navigating around corners in the house to reaching anything. When I can, I still do stand--while it may not be for long, it's good for my bones and heart and muscles. In terms of physics, it is far easier for me to stand to do something than to use a wheelchair to do it--but I most often can't do so and am almost completely bedridden or couchbound without one. I cannot understand why anyone would ever use a wheelchair who does not need it--from access issues to social issues, employment issues, bullying/harassment, being accused of "giving in," jolting over rough terrain or cracks, trying to carry objects, the extreme costs involved, the difficulties of transportation (often as difficult as getting a chair), difficulties with reaching everyday objects and injuring to reach beyond what one should, home modifications or doing without, using a wheelchair is a big step. It's one more people should avail themselves of rather than confining themselves to home, but nothing about it is easy.

Maybe AB's should try this: sweeping the floor in a wheelchair--it's not easier! A wheelchair is not like putting on a pair of glasses to see; it's not the near-100% corrective that eyeglasses are for most people. Navigating a wheelchair while holding and wielding a broom is extremely difficult, getting all areas and not running over the pile you just made, trying to move or get around chairs or objects. Your feet have a much smaller size to pivot on than the base of a wheelchair. And you have both arms free if you're able-bodied. While it's possible that your body might let you sweep if you could stand, it might not let you do so from a wheelchair, especially if you have shoulder or spine pain--or you may feel a lot of pain from it later. And that's just one task--that takes four or five times longer to do, with more effort expended. So even if you can do that, you might not be able to do other tasks, because of time or pain, depending on your body. And with scooters or some wheelchairs, you might not be able to sweep at all; one or two arms are needed to propel.

A wheelchair only makes things possible that would not otherwise be possible. When pain or level of function keep someone from living, though, a wheelchair is a solution. But nothing about it is easy.


Elizabeth McClung said...

Sigh. It never ends. Eh? I don't know what to say. I am sure there is a solution and that you will find it. I hope so. I cannot imagine trying to get my wheelchair in the van- Linda puts me in the front seat and does it all, for her it is quick and easy after multiple times of practice. For me, it would be hell on earth.

As for the F*CK*NG A*SHO*ES who say that we are 'lazy', which is oddly what I got from my pain specialist, rhumatologist, and about 5 GP's, I had the ability to say, "well, I did this 10K and that 10K and I box, and I play badminton, so what do you do again?" And of course, most of them have the exercise of walking from the car into the office. They just 'know' that us disabled folk are lazy, the same way they 'know' every stereotype. Your blog post and your research is probably more than that doctor did all year - they don't read a lot of articles or are up on new stuff - as the doctor said yesterday, "Hell, how should I know stuff like that, I haven't dealt with nerves in....35 years?" Later, "Oh well, you know all the terminology and journals, that sounds about right..." Later "The honest truth is, I know the bare minimum of what I need to these days."

And part of that is that if I am alive, I must not be dying (and that I am lazy). haha. I have to laugh or cry. I am sorry I was ill so long.

FridaWrites said...

Yes, when it rains, it pours.

It hadn't occurred to me that a lot of doctors don't keep up with the research and what's current, but I'll bet you're right. Doing the bare minimum to get your continuing ed. credits in the U.S. is not enough at all. I suspect that a lot of the pharmaceutical reps are doing a lot of the educating on new treatments for specific conditions!

Some of my drs. seem to keep up with the research and, as my mom says, are sharp as a whip, others don't.

I cannot think of anyone who pushes herself harder than you do--definitely not lazy. I think that is some drs.' perceptions of anyone who's under 80 or not a paraplegic who uses a wheelchair. Que sera sera, I guess. Disability blog reading should be required for them, or at least for contemporary med students.