Wednesday, March 31, 2010

Health Care Reform 2010

Following are links to concise and helpful summaries of immediate and long-term provisions of the new health care act that I found in The Washington Post and The New York Times; though there is some overlap, each document contains some important information the others do not.

Health Insurance Implementation Timeline:

Immediate Provisions (2010):
You will be eligible for a group insurance plan almost immediately (less than 90 days) even if you have pre-existing conditions.

Summary of The Patient Protection and Affordable Care Act:

I know we all still have questions about how everything will work and how much it will cost, but I hope this gives some help.

Get Your Boobies Squished

Today I had my baseline mammogram...chances are many of you readers should too. If you've had more x-rays than you can count when the exposure was higher, all kinds of radioactive dyes pumped in, other hormonally influenced gynecological cancers or pre-cancers, and/or family history, you may want to consider getting your baseline earlier than age 40--the old recommendation was age 35. At least in the U.S. (and I hope increasingly in other countries), many newer mammogram machines allow you to roll right up in your wheelchair or sit in a chair. If you have chronic pain, you may hardly notice--I didn't, though some people may have increased sensitivity to pain.

Some recommendations:
-Go when pain is lowest for you, especially with the shoulders and spine. My right shoulder is killing me already--that bothered me worse than the breast squishing.
-Ask for a double appointment time (they can book you for two slots), explaining that you are in a wheelchair or have a disability. This means no one is rushed.
-Rather than try to fit yourself into a somewhat accessible changing room, ask to change in the mammography room. I actually do this for all of my radiology--much easier, no injuring joints or spine by trying to maneuver awkwardly in tight spaces.
-Try to schedule on a day when you already have another medical appointment, thirty to forty-five minutes in advance. These don't take long, and no need to trek out on a separate visit. In the U.S., you don't have to get it ordered in conjunction with a doctor's visit in order for insurance to pay; these are covered under your well-woman care and you can just schedule with the radiology center.
-Explain to the tech(s), if it causes you pain to be moved, how you need to move yourself. Yeah, I didn't explain in advance and I will in the future; unlike with AB's, it hurts if someone helps me forward rather than telling me where they want me so that I can move there.
-Before each view, turn the wheelchair off or brake after your chair is positioned, before your upper body is positioned. No need to be compress more of yourself; only the girls should be wafer thin and only temporarily. If you've ever smashed yourself into a table or wall, you know here is not the place you would want to do it.
-If you have dysautonomia or otherwise pass out easily with added physiological stress, warn the techs so they can have another tech nearby. While I did not have any problem, I did tell them, and others might have more difficulty.
-If you really have problems positioning yourself (from paralysis, muscle weakness, or joint fusion), take an attendant or family member who is accustomed to positioning you so that they can help without harming you. I did okay but could see that others who are more physically limited could have some difficulty or may need an extra hand to provide support to their arm.

In the 1990s, there were no mammogram machines that accommodated wheelchairs; other wheelie women advocated so they (and we!, younger wheelies) can be screened. Nearly a decade ago back one of my wheelchair using friends could not have a mammogram despite a worrisome lump because such a machine was not available in her area. The times are changing: for you. Having one health condition doesn't mean you can't have others--it makes them more likely. There's a high survival rate with early detection, however, so get your screenings done.

No insurance? Find low cost or free mammograms at this link:

Sunday, March 28, 2010

Thank you, Pride Quantum

I spent at least 12 hours sitting in the wheelchair yesterday--that was overdoing it and I am a little (!) sore today, but wow...My arms are sore because I helped so much in the kitchen yesterday. The strategy of moving a towel and cutting board, then mixing bowls, to my lap really helped, especially as now I sit lower (so I can get under tables). It was amazing to be up and around the whole time my friends were here yesterday. I worried at first that the back wasn't high enough, not seeing that the chair sits so much lower that the back *is* much higher. But it's not. It's fine. (Wait, twelve hours sitting up? Plus more time fully reclined?)

I am very grateful to have the new wheelchair now, as our new insurance that starts this week will only cover $2500 on DME. The delay after the approval stemmed from our attempt to get the power elevating legrests covered--we had to pay for those out-of-pocket ($2800), as our policy considers that to be a comfort item only, though the tilt-in-space and recline functions were covered. But having my legs elevated relieves my low back pain as nothing else can. Though I debated not getting the power function, I am *very* glad I did, as I make continual adjustments for pain relief all day--or have to put myself back upright to turn corners--I could not do that as I need to otherwise, and it's too painful to leave my legs down. The power function really is essential.

Everything seems to be working well and I'm not even thinking about pain! The wheelchair lift in the van needs a bit of recalibration or adjustment as it's balky right as it hits the lip of the van and requires leaning against it (not a lot of effort but may create some bruising). But the wheelchair is within its capacity (350 lbs.). It takes a lot of adjustments to get it in--I have to lower the footplates, lower the backrest just right, remove the armrest and settle it down, use the transit ties to prevent shifting (as it will; the scooter would not). Though this should get faster over time, if I take any quick runs anywhere (five minutes into a store or the kids' school) I may use the scooter. And I will plan carefully on my own--many short trips will mean too much standing for me sometimes. Long-term dream: van conversion.

If we had a van conversion, I would have ordered drop-in legrests rather than footplates for better adjusting and to keep my legs a little wider/relieve back pain. I do have to exert a lot of muscle energy to keep my legs on the plates--not only because of lack of muscle strength, but because my hips turn out very well naturally (thanks to years of ballet that made this position more natural for me--my feet always turn to the side if I lie on my back or when I used to sit on the floor). The solution: I do need to get abductor pads for the chair (or is it adduction?--the ones on the sides of the thighs); the supplier had mentioned this before, but we'd hoped the Supracor cushion (not in the demo) would channel my legs enough--I've also been far more limited in the past few months since the seating. Hopefully I can get these covered under the new insurance, though our medical reimbursement account can help with that extra expense. But this is liveable for now, especially as I remain pretty comfortable. And with the abductor pads, I won't need the drop-in legrests at all. I am not keen on having them but am also not keen on exerting a lot of continued strength--though my muscles may improve in this way over time. When I'm reclined, I push my feet underneath the footrests for now--there's a space to do so. I also know some exercises that can help.

The wheelchair is much more responsive than the scooter, so I am extremely cautious near curbs and turns. I'm learning how to balance between stopping the chair and moving the chair too slowly to negotiate around an object and on the other hand, trying to maintain speed in anything other than a straight line; I may look a bit drunk or really uncoordinated as I get going sometimes. Reversing feels difficult/counterintuitive because the back casters move independently, but I'm improving. It still makes me a bit nervous. But I don't need to reverse much since I can turn myself around as a walking person would do--scooters require a lot of backing up since there's often not room to turn them around. I can hold a cup of coffee (carefully!) as I cannot do on the scooter--both hands are needed for control when reversing or making a tight turn, I find. Channeling the chair between narrow doorframes is still difficult at times and I worry about hitting doors or bumping pedestrians (I try to give space).

We went out to a movie today (more on it tomorrow, I hope) and "walked" for a mile and half. It did not feel that far! I don't even notice bumps and cracks in the sidewalk--so much easier on my spine. When we went to a movie a few weeks ago, I was only able to go to the movie (the movie seat was more comfortable for me, so I sat there) and very briefly to a game store my son wanted to visit; it also took me a long time afterward to recover from this outing. What a difference to sit in my chair four hours, with only a little leg pain.

I am far more able to sit up (better for me, higher heart rate and better for my urological issues) and can do more physical tasks--though they are more difficult in a wheelchair because of reach and access; even clearing clutter takes a lot more effort, many times more. I am more active, not less active, in my wheelchair. I think I look better in it, though I did not think this would be the case. My posture is where it should be rather than slumped around to avoid pressure on some joints, and I'm not in pain.

Friday, March 26, 2010


New wheelchair here...

It was late since the alternator on the service provider's van broke (fortunately they had another van free and someone else went to pick up the chair!), they were here an hour, and I've been rolling around and microadjusting for an hour.

The service technician (she!) said that she could tell a big difference in my pain level when I moved from scooter to chair--she could see the difference on my face.

Rolling again....

You People Are So Lucky...

...that you don't have to sit with Her Impatience (me) right now. My antsiness would get on your nerves.

But we're having some friends/family over tomorrow night--sort of an informal new wheelchair party. My cousin's bringing a cake.

Thursday, March 25, 2010

Notes on a Film: The Doctor

Last night I watched The Doctor, a 1991 film with William Hurt, on Netflix. Adapted from the autobiographical account of Dr. Ed. Rosenbaum, the movie features an expert surgeon, Dr. Jack MacKee, who does not show compassion for his patients and who can be callous towards his patients' bodies in the OR. Dr. MacKee's actions in this film represent an extreme; while many of us have encountered a physician who can be indifferent or cruel, I would hope that most people find doctors who show kindness and conduct themselves professionally even when they think patients aren't looking. When MacKee acquires cancer himself, he finds out that the system does not treat him any differently from other patients.

Like the other patients (and us), he must deal with unsettling waits for difficult news, practitioners and technicians who don't explain what they are doing to him, medical mistakes, outright fear, humiliation and embarrassment, an inability to get important test results long after they are available, bureaucratic paperwork and errors. Gender does not soften the system: though his doctor is female, MacKee is subject to the cold indifference he often showed patients. When he complains about it, saying that everyone will be a patient someday, his medical file is thrown at him in anger. The irony: his doctor is kinder than he was.

While a two-hour movie can only capture so much of the medical system, I definitely recommend the movie to both physicians and patients (who are more than patients--we have lives outside that status). From Dr. MacKee, we see that much of the heartwrenching emotion patients sometimes struggle with stems not from a lack of medical knowledge but from the medical system as well as the illness or disability. Patients are not "stupid" for having emotions or being ill or disabled or for struggling with the indignities of medical tests and the medical system, which dehumanizes because it simply cannot accommodate individual needs, such as MacKee's need to see his own patients on time.

Even though he is a physician, MacKee's express wishes are ignored. He asks for a lead apron to protect his other organs while his tumor is irradiated--the technician denies this and claims he is safe since the radiation is focused. Why then, does the technician himself leave and close behind him a shielded door? To protect himself. I know all of us who have undergone test after test with radioactive dyes and x-ray after x-ray, all of them essential (or so we hope), wonder when that will catch up with us or if it already has (precancerous tumors, anyone?).

Hurt does well at capturing the subtle but clear emotions of a patient enduring tests and surgeries, wondering, "What is happening to me? What will happen to me?" None of us would subject ourselves unnecessarily to the pain, fear, indignities of the medical system, nor if we could help it, to the coldness of a system that only increases the anxiety.

Wednesday, March 24, 2010

Friday, just in time

Friday at 3:00--tick tock tick tock tick tock tick tock. Have been afraid to write it, hoping all the specs are right, that everything is in order. Goodness, excited. If you don't hear from me this weekend, I'd assume that I'm trying the new fancy wheels on all kind of terrain and doing a lot more indoors and out. If you want to see how I move in a wheelchair, stay tuned for the rest of the post.

I am impatient but will need to pace myself. I am remembering my first long day on scooter in public, though this wheelchair will be much more comfortable for me. I want to find some uncrowded open public space with varied terrain. I can think of a few places that are typically great but that are unusually crowded on spring weekends. And I want my husband nearby in case I get stuck--I want to know my limitations as well as how the chair moves, especially before I crowd myself into elevators or doctors' offices.

I've been thinking about long-term goals, and we all need them to keep us going. I've been thinking about a really wheelchair friendly house for the long-term--this isn't something for now, but ten years or more from now--again, a goal. What stops me planning is wondering where we would live and whether we would modify an existing house--maybe this one; a stairlift alone would accomplish a lot--or build a new one--taking some of the best features of this house that we already like, sizing down some, etc. But I think dreaming is good--I kept stopping myself from doing so because we don't have the money for moving or modifying now, but I realized I am stopping myself from thinking about the future that way. Can a balance be found, so that I am content now (as I should be) while thinking ahead?

I have been doing more cooking as I can, but it's important to think about organization (which can put a quick halt to my cooking if I can't reach or lift something). There are some useful videos on Youtube on cooking with a wheelchair. The first I show here features Shannon Minnick cooking one of my favorite indulgences, fried chicken. Shannon and Bonnie (in the second video) have more common sense than I do, and I've just learned from them to move the prep bowls and cutting boards to my lap. This will actually be easier in the wheelchair because the scooter tiller can get in my way. While I do sometimes move to the dining table, as Shannon suggests, that can be a lot of trips back and forth sometimes. Wheelchair users can get shoulder pain from working at high counters, another reason to do some work in your lap or at the dining table. Notice how she protects her lap with a heavy duty material--when you use a wheelchair, you can't jump out of the way if something hot falls as you can when you're standing.

I have not yet seen other wheelchair users move as I do and as Shannon does, approaching the destination and making the turns at a relatively high speed and sliiiiding into place. That's time saving when you're in a hurry, heck on the walls when you are me and oops--well, this will be one advantage of the tighter turning radius of the wheelchair--the scooter's turning radius is wide. (I am not at high enough speed to be in danger and wouldn't do this outdoors--I know my scooter's limits.)

This second video from Bonnie shows how some everyday kitchen tools can be adaptive devices, with an egg slicer used to chop strawberries and kiwi, for example.

In her other videos, Bonnie demonstrates some ways to reorganize the kitchen and make out-of-reach items more accessible. I know Pampered Chef products have made my cooking a lot easier because of the ergonomics of their products--though the stoneware can be a bit heavy for some people (I still love it because it's easier for me to clean). While I don't have quadriplegia, spine pain greatly limits my reach, and I may benefit from some lazy Susans or putting straps on hard-to-reach items as well.

Some assistance may still be required. I can't reach into our oven or dishwasher when in the scooter, though that may be easier with the wheelchair; it will still be physically difficult because of my spine pain and limited mobility. In one of her videos, Bonnie shows a countertop oven that's larger than a toaster oven and a griddle that can be used on a tabletop. While some assistance may still be necessary from others (my children often help us with loading and unloading the dishwasher, for example), it's good to have as much independence as possible. These are some items to think about for the long-term; it is much cheaper, definitely healthier, and often easier (no driving) to eat at home.

Shannon, by the way, also shows how to do pressure relief maneuvers for people without the upper-body strength of a paraplegic. While I knew I needed to prevent pressure sores (especially when I developed a spot over my sacrum), no one showed me how to do that, and she shows a more efficient way than I had been doing. If you're not going through rehab or seating specialists, no one gives you this and other really crucial advice. Thanks, Shannon and Bonnie, for showing some better ways to accomplish everyday tasks. Now I really am craving fried chicken, which is on the menu this week.

Saturday, March 13, 2010

Say No to Colloidal Silver

One of our local groceries has colloidal silver on sale. An alternative health care practitioner recommended it to me once just before I got pregnant; thank goodness I trusted my intuition (always listen to it) and did not try it.

Colloidal silver will turn you blue. BLUE. Bright blue, not hypoxic blue. Permanently! Irreversibly. It should be outlawed. Go to "google images" and look. Shame on those who continue to sell it or "prescribe" it.

Besides, aren't we trying to get heavy metals out of our systems? Isn't that what alternative health care practitioners recommend? The mercury in fish and vaccines and dental work is suspect; we know that mercury can cause grave harm, giving people long-term tics and brain abnormalities. And there's lead--lead poisoning still a risk for many children from old paint or its residues in their homes. Yet we're supposed to take drops of silver? (Or gold, for arthritis patients.)

The problem is the word "colloidal." People like it. It sounds scientific and friendly and interesting. For nonchemistry types, it says, "I am grown up, doing something fancy schmancy." If you want to look like Papa Smurf or Smurfette and don't mind risking your neurological system, go ahead. But otherwise, stop it if you're taking it and tell others. If gut instinct doesn't stop you, always, always research any alternative heavily, looking for in-depth information about contraindications, adverse effects, allergies, and interactions with other drugs or remedies. And remember, there was a first person to turn blue, and a second...

So often we hear that because something is "natural," it's safe (see Andrea's excellent post on this topic at As others have said, hemlock is natural. Cyanide is natural. Poison ivy is natural. Toxic mushrooms are natural. Natural absolutely does not imply safe. You would not, I hope, wander through the forest picking up pretty little mushrooms and popping them in your mouth, not if you value your liver and your life. You'd research them with extraordinary caution and most often rely on experts who really know their work, not quacks who read a guidebook. Even then, deadly mistakes can be made.

Note: chelation for heavy metals is also dangerous, though fancy-schmancy sounding too.

Friday, March 12, 2010

I Don't Deserve This

Road crews have been working on a section of our street corner all day. When I went out to wait for my daughter's bus, as I always do when my husband is not there (my son moves the ramp to the front, which he could not do two years ago; his bus arrives earlier and at our door rather than a half block away), the work crew began physically mimicking me and making fun of me. In front of my kids.

Telling them they work with my mother-in-law did not stop them. It made it worse. (No, she would not gossip about me at work. Probably few know about my level of disability.)

Their supervisors are not back in until Monday.

The world has gone to hell in a handbasket, and I don't mean the one on the front of my scooter.

While not all eight or so did this, several did. And even one person harassing me, especially in front of my kids, is too much for my comfort. It makes things difficult for all of us.

Wednesday, March 10, 2010


I had not realized it was so long since I blogged--having the job is good, adjusting to loneliness has been difficult. When our transportation and other issues get settled down again, things will be easier--right now I haven't been able to make it to needed doctor's appointments. Thank goodness the kidney bleeding crisis ended right before my husband started the new job. It's difficult for me to engage without more help or mental stimulation--I have been reading and commenting on some blogs, though. I have little concentration that I want for various tasks, distracted by emotional and physical pains, the difficulties of being physically dependent but not having help. My counselor won't do phone appointments (I can't leave home for multiple reasons) but I did call a crisis line this week and that has helped me move forward, ever slight, barely perceptible.

I am not habituated to be an anchorite, but when times call for it, I tend to go within almost completely. Except for doctor's appointments--and the last of those on February 4--I had not been able to go places since my son's Christmas party and a twenty minute run into two stores. Most won't visit, even those who have time; it's always a tentative future event or unfulfilled promise if a day is set. Unintentionally, now most emails unanswered, phone calls unreturned. I intend to answer them. It's like I can't make myself move. I just need out--I have been able to get that on weekends some, finally, a few hours here and there. It's not personal if I've not responded; I will try and want to try. I long for connection and yet it's as hard to do as physical movement when the pain is greatest. The unengaged aloneness for this much time just feeds itself, depression I guess.

My children will be on spring break soon. We will have visitors and visit and more good in the coming weeks.

I need LIFE. While antidepressants are helpful for some, right now that would be like putting a band-aid on a spurting artery. The cause of the bleeding has got to be addressed, rectified, and right away. I am absolutely isolated during the work week, plus people are gone for evening activities, birthday parties, errands--weekends can be as difficult as the week. I want to work or do personal projects/hobbies, but I need help to be able to work, with retrieving or setting up or books or materials or getting me to an interview. A wheelchair. Dressing alone can take up all of a day's energy if I don't have help or must rush. I make sandwiches for the kids before school and have to lie down for three hours, still not recovered fully from the pain. If we don't plan carefully, I don't eat.

I knew things were getting bad last week when I couldn't even look forward to the wheelchair (bound up in red tape)--that's a bad place to be. But I feel hopeful realizing I'll have ten days with the kids, and probably transportation during that time too to take them somewhere, plus not so much pain that I can't get them out some. Spring weather ahead...