Thursday, March 26, 2009

Blessings: Another Unintentional Blog :)

We were allowed to spend what is left in our medical reimbursement account *today,* all funds through the end of the year, not just through March. So I had a shopping spree of over $2000 in one afternoon and evening. I'm feeling a little giddy. I took the kids to the pediatrician this morning and had fun at the podiatrist this afternoon (nail removal) and did this wild amount of shopping between appointments and after.

Please understand that I am normally indecisive and think long and hard about what I want, trying to decide optimally between items and to get something that will be well used and is lasting quality while also maximizing coupons and discount codes (which I also did here). This kind of rapid decision making really is dizzying for me.

I bought the Tilt in Space for the scooter (under manufacturer price), a $600 Supracor wheelchair cushion for $400 that can be exchanged for other cushions/medical equipment if it's not what I need, a clear (left-handed) foldaway desk for the scooter, a cupholder that will fit my armrest, a side ziptop bag for the armrest (I like the pretty ones but am glad to get this one) and a cover for the electronic tiller for when it rains. Also, a boatload of contact lens solution and over-the-counter medicines we use. It got difficult after getting the Tilt in Space, cushion, desk (these three very much wanted) and medicines to decide among accessories, but I think I did well.

I felt a little stressed from the fast researching and price shopping and trying to get the best for our money, but thank God for this. I'd probably never have bought the Tilt-in-Space or the wheelchair cushion otherwise--I could never justify the expense. But they may allow me to sit up a lot longer with a lot less pain in the scooter. :)

By the way, the police in the mid-size city where we shop and the kids go to school have no authority with disability parking. They have been instructed not to issue tickets unless they can find the driver--because they'll be thrown out of court. Not so with the nearby large metropolitan area, which will issue warrants if the tickets aren't paid. Frustrating for officers too!

Our latest parking violator: the strings teacher, across an access aisle and disability place. Her friend the children's choir director can barely walk from arthritis, uses a cane, and sits to teach. There are a lot of frequent violators.

So I'm blogging again. Just don't worry if I don't for a while or it's sporadic. Just lots to take care of.

Wednesday, March 25, 2009

Mortgage assistance

Our mortgage will be placed into forbearance for up to six months, which will just extend the time we have to pay it at the end of the loan. Whew, that buys us some time for jobs or for trying to sell it. Advice: call the mortgage company early. They don't want even more houses dumped on them now or more losses when someone may be able to pick up the same loan terms shortly. We can also have the terms of the loan modified if new jobs are at lower pay. This is obviously a huge help and will stretch our funds much further.

Vocational rehab services is located in my parents' office building (!). Who knew? I've been assigned to a counselor and will have an appointment soon. This is all they do, place people with disabilities.

Tuesday, March 24, 2009

Fast list of resources and how to grocery shop cheaply

Okay, I lied, but not intentionally--but I wanted to share these resources. If you know anyone else who is facing unemployment or is already unemployed, here is a list of resources you can send them. You can quickly google to find the relevant information. I recommend that people apply to these programs as early as they qualify and do a lot of planning because there are still a lot of expenses that unemployment wages and these other programs will not cover. Careful planning can help extend resources greatly. I'll explain why it's crucial to apply early below.

My list of resources:
-Unemployment
-Mortgage assistance
-Nonprofit debt management (whee, medical debts; some debt management is actually a scam, so be careful)
-Free school breakfasts/lunches for kids
-Food stamps (actually a debit card these days, (households with disability often qualify earlier)
-WIC for women who are pregnant, breastfeeding, or have young children (they have increased nutritional needs)
-Utilities assistance (telephone as well as electricity, people on food stamps automatically qualify)
-Section 8 (housing assistance, government voucher)
-Medicaid for children, though there may be a waiting list; also for adults before COBRA expires (apply early)
-Free medical clinics for those without insurance
-AFDC/TANF (aid to families with dependent children; not sure if unemployed people qualify)

It's good for adults with medical problems to stay on COBRA if at all possible to ensure insurability with a new carrier (some still won't cover if you've been treated for a particular illness in the past 6 months). Some drug companies also offer "scholarship" programs or help with copays. Food pantries if needed, discount clothing stores and consignment stores can offer resources for job hunters.

Here's why you need to apply early. Despite all this assistance, even if you live with family to extend resources, as we may very well do if we don't get jobs in a few to six months, money will not go far. Applying early and watching to see when you qualify allows you to hang in there until you can get a job and to stretch every dollar as far as it will go. The maximum unemployment assistance is about $800 a month, and that's limited to about 8 months. For us, this will pay our medical premiums, car insurance, and car. Not covered would be any activities for your children, gas for getting to job interviews, even used clothing/shoes, haircuts (necessary for job interviews), school supplies, personal products or laundry detergent, etc. That's why managing money painstakingly is crucial. And this is why I also believe the concept of the welfare mother is a myth. People just can't do it since unemployment or AFDC doesn't last forever.

I recommend a website called Money Saving Mom for food shipping and coupon ideas and lists of products you can get free with coupons--a Sunday paper will more than pay for itself if you use a store that offers double and triple coupons. Watch store sales carefully--we recently purchased $180 of groceries for $100. Pasta, rice, beans, and potatoes are cheap additions to meals (though be careful not to overdo the carbs). Eggs are inexpensive and good protein, as is peanut butter for those who can eat it. Homemade soups can hold a lot of vegetables with no nutrients lost. Watch for the grocery flyers that come in the mail--when you add a double or triple coupon to a box of cereal, you can get it for $.50. If you or your kids eat meat, watch for it on sale. With these kinds of sales, you can get occasional treats like frozen pizza. In general, though, of course avoid convenience foods. You can make up several meals in advance on a weekend day and put some in the freezer. You can also buy chicken in larger packages, preshred it ready to go in other meals, and freeze it in divided portions; the same with ground turkey or ground beef. Just be careful not to buy more food than you'll use and use what you already have. There are lots of ideas for frugal, cheap, easy, and nutritious meals on the web.

I do plan being back for Blogging Against Disablism Day and will be back soon. We hope that we can get jobs soon and this will be very temporary. In the meantime, I really wanted to pass this on in case there's helpful information someone else needs. I have to say no severance pay sucks. If this had happened a few months ago, we'd have had 6 months of salary too. I would prefer to still be an earning family and keep paying our bills ourselves, taking care of ourselves and hope we will be again very soon.

(Update: we can still make it about six months in the house, but we will be moving to the in-laws immediately if we sell the house.)

Monday, March 23, 2009

Blog on hold

We have a lot of personal matters to deal with right now in terms of lots of minor home repairs, repainting, deep cleaning, and purging old stuff to get our house on the market if the time comes and in terms of trying to find employment (including out of state searches). Other homes have been on the market in our neighborhood over a year, so the house must be really competitive. Similarly, a lot of people in my husband's field have been out of work for over a year here. I'm a slow worker at physical tasks and there are a lot of other tasks to take care of too. Right now I'm putting this blog on hold for a month or two, though I anticipate commenting on other blogs as I take breaks.

Thursday, March 12, 2009

Worries

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.

Wednesday, March 11, 2009

Job loss

It looks like hubby is losing his job today--he's 99.9% certain that's what the meeting is about because of the way it's been called. *No severance pay.* No cushion.

I'll get back to comments when sentences make sense to me. There's also a lot to do. I need to make lists. That gives me a sense of control and can give us some measures that will help.

UPDATE: His whole department is being laid off (so much for "vital function"). His job will continue through sometime the first week in April, and we will have an additional paycheck because of several weeks of unused vacation time. We have insurance through the end of April (can schedule checkups for kids and hubby) and it's rumored that the government will pick up 2/3 of COBRA costs after April 1. So 5 weeks of money, which will stretch by futher cutting expenses, then it takes 6-8 weeks to get unemployment in our state because of administrative delays/backlog.

As I go through each room of the house, I find myself estimating the resale price of a lot. Still, that's just another paycheck or so, but it can help toward that gap. At least that's a few more weeks of job hunting while he still has a job.

Tuesday, March 10, 2009

More room

The rheumatologist changed office suites to one he had remodeled. There's lots of wheelchair turning space in each exam room and nice tile floors without wide bumpy grouting. The new lab is huge, with a wall of windows. That's got to be so much nicer for the tech, who was in a very small windowless space before. I forgot to try the front door myself to see if I could--habit tells me to wait for someone else, but it might have been one that stays open. Regardless, the door is now clear glass so someone can see me or others if we're waiting outside--we could see someone on a walker who needed help when I left. Though there wasn't a chair pulled out for a wheelchair space, I was able to easily sit on the end of the row without really being in the way and could reach the table with magazines on it.

It's nice to be able to move freely in a doctor's office and not worry I'm going to bump a wall or that someone will trip over me and hurt themselves when spaces are really small. This will be good for a lot of people, including employees and patients who bring someone or a few someones with them. I should also point out that this is one of the few doctors I know that has a exam table that can be raised and lowered (the 39% apparently aren't evenly distributed). It's nice to have someone think about accessibility. That's a rarity.

He brought up the Enbrel idea again, specifically when I mentioned service dog. I don't know. I'd forgotten that my reason was pneumonia that didn't go away easily or other infections (post-anesthesia I forget some things that were immediately recalled before; when he mentioned TNF blocker I momentarily had no idea what he was talking about. Once refreshed the memory is there again). It's an expensive drug. Really expensive. I think we should wait and see if we have insurance in a month first. Drugs like this bankrupt the whole medical system. It does metabolize through liver. There are other big potential adverse effects, though many people do benefit.

In the inbox

I've received several emails from people in the past week in this vein:

Hi, Frida,
I know it's been a year since we've talked and I couldn't be bothered with even a hasty "good luck" when you said you couldn't make it because you were having surgery. I know I've ignored your occasional emails and phone calls until you stopped trying but (insert excuse here). However,
-now I have a question about work that only you can answer
-my husband/brother/friend has one of the same spine issues and now we understand or want your advice
Hope to hear from you soon.

XO,
Fair Weather Friend

Yes, one person actually said, "I know I never asked how the biopsy went but..." One person only contacts me when she wants something. Others I just think are busy. I finally called one person out on it and she said she doesn't really know how to deal with that much pain. Neither do I.

Some of my friends are busy, exhausted from work, have other big life issues to deal with. All of this is understandable. It really is. Those friends stick with me. Others do call and say hello and I know it can't be often. But someone just ignoring me until she needs my help again and most of the time not even bothering to reply to my response ("thanks for the help") is just rude.

I just don't get this. My husband pointed out once that he saw an acquaintance of ours, and that when she saw me she literally ran the other direction. Wahahaha, scary monster woman on wheels.

Anyway, I had made the decision to stop being used in this way and need to stick with it. That's difficult for me to do. Sticking up for myself is not something I was taught and it's painful to have to dig in, whether it's for disability accommodations or with friendships. I don't need or want to be rude to others, but setting boundaries is appropriate in this kind of situation and I've never regretted doing so.

Sorry to complain. I should be used to this. When I was young and had to be taught at home because of bodycasting and its aftermaths, my friends and their parents did the same. Their parents told my mom they didn't want their daughters to have to deal with that. I know this is how some people are and I know that I am sensitive. I am becoming less so, though. I no longer feel queasy or with my stomach in knots when I pull up to an area full of strangers and see heads swivel and faces look surprised, for example. Sometimes I just have to learn to settle in again with what is.

Note: Some of my friends are worriers and this isn't about you. This doesn't apply to friends who read the blog or any blogging friendships; we converse way more often than that.

Monday, March 9, 2009

How Many of Us Are There, Anyway?

For a number of reasons, I've been wondering how many wheelchair and scooter users there are. The best information I could find comes from a study done in May 2002, though with an aging boomer population and swift sales of mobility scooters and less expensive wheelchairs, I imagine a lot has changed even in the past seven years. The study does exclude those living in institutions. I presume "institutions" include prisons, college dorms, and temporary hospitalization during the survey, which could skew the sample.

From the Disability Statistics Center:
An estimated 1.6 million Americans residing outside of institutions use wheelchairs, according to 199495 data from the National Health Interview Survey on Disability (NHIS-D). Most (1.5 million) use manual devices, with only 155,000 people using electric wheelchairs.
The footnotes tell us: "There are also an estimated 142,000 scooter users, for a total of 1.7 million users of wheelchairs or scooters."

I'm not sure why scooter users are excluded from the 155,000 since many people use scooters as wheelchairs rather than for very long distances only. I'm curious about how the sampling was done and how part-time use counts since many people do not need wheelchairs in their homes but do need them outside their homes; I am assuming that temporary use was excluded, though maybe it shouldn't be since this population also needs accommodation.

But basically, there are at least 2 million wheelchair and scooter users whom we can expect to see out and about regularly (and many more that are invisible to us), and probably that can be multiplied several times more if you include temporary disability. Most use manual wheelchairs, though I have to wonder if more don't need power wheelchairs.

Other facts:
-0.4 of the working age population uses a wheelchair. Given that some people may be unable to work because of health and that scooter use isn't added in, that means we should expect at least 1 in every 300 employees to use a wheelchair. Again, maybe far more if you include temporary use. And we should see a far higher percentage than 1/300 employees with a major disability since there are many manifestations of disability.
-About 80% of wheelchair users perceive themselves as having a disability.
-Women are more likely to use power chairs (limited upper body strength?).

Rather than saying "educational attainment is low," I'd suggest that barriers to education still exist, both physical and attitudinal.

One table can be used to address public misconception of wheelchair users as unable to move or walk at all, and combined are 5 times more common than paralysis or amputation. Of course there is also partial paralysis, people with MS may be able to walk some, and some people with stroke may be able to ambulate a short distance. Surprisingly, muscular dystrophy, ALS, and similar diseases don't even show up in the statistics--I hope people were self-reporting rather than offered a list of options.

Thursday, March 5, 2009

Do These Tires Make My Scooter Look Big?


You know I keep getting a lot of comments from strangers about the size of the tires on the Amigo RD. It's true that the Amigo RT, with much smaller tires and a more streamlined base, would have also been a good fit and met my needs. It would have given me the leg room I needed but saved 2 inches in length. However, the two are about the same price and I like outdoor activities. The RD handles gravel, grass, and rough pavement far better, and I'd already had trouble with cracks in the sidewalk and rugs with the Pride GoGo. Other scooter users also told me to go with larger tires for the sake of my spine/smoother ride. So really it's what I need, and the wheels aren't bigger than what you'd get on a power chair. I have seen 4-wheel scooters with giant tires, and this just isn't in the same department. While yes, they're larger than the tires most seniors (and the rest of us playing the DME waiting game) get on the cheapo scooters, I go a lot of places and intend to go more places. The RD also has more underbody clearance, and I've learned that every bit of that which I can get improves access and prevents me from getting "caught" and unable to move.

I like to go to Renaissance fairs with rough terrain, I like to go hiking as far as I can with it, I like to go camping, I like to go to art and other festivals outside. I don't go around telling other people that their shoes look like army vehicles or that their butt looks street ready. It makes me feel clumsy, awkward, and loutish, sitting there on my army tank scooter. I am female and indicating that anything about me is way too big or industrial or unfashionable hurts my feelings. As far as scooters go, I think it's good looking.

While the RT's smaller black wheels may look more feminine and go better with a fancy dress, I'd like to get where I want to go on my own terms. And while the GoGo really does coordinate well with business attire, I prefer to have my pain further reduced and not have my long legs cramped up. While fashion is a partial consideration for me, comfort is more so. It's adaptive equipment, not an accessory that can be changed.
I do pay attention to physics, and some similar scooters by other brands that might be slightly more visually appealing or have that handy back pocket have lengths slightly too long to get on bus lifts, turning radiuses of 41" (36" is specified by ADA, mine is 33" and almost as good as the tiny GoGo). The tiller adjusts at my hands, so that I can move it as I need while I'm sitting, rather than at the base. It has a headlight, useful at night. It keeps my hair from standing up. The swivel seat can stay unlocked so I can move freely without assistance from someone else and at a variety of angles rather than 90 degree settings. The controllers don't tire my hands like the continual push buttons on the go go did. I can use either hand to drive it (left side up=reverse, but I can push it down to go forward). The seat isn't bricklike and painful but decent and can accept alternate cushions, which I may need. The basket can be removed so it's out of the way in restaurants or occasions. It has good securing points if I move and use public transportation. The platform is nonslip slightly rough surface (great post-swimming). The heavy battery does not have to be removed--the scooter has a plug on the back and can be plugged in anywhere without carrying an adapter. The design is thoughtful and evolves over time as the company gets feedback from users.

Anytime I use equipment out in the world at first, I can be insecure, and so when my first feedback implies aesthetic hugeness, I don't feel more secure, though I know it's exactly what I need and want. I had to wait 10 months for her, almost like a pregnancy. As soon as I tried out the demo model, I knew that's exactly what I needed. I'm fond of her. She was carefully selected and much loved.

Tuesday, March 3, 2009

Wheelchair Smackdown: The Dream

I'm in extreme pain from hitting some hard parking lot potholes in my scooter today that should have been fixed, definitely not ADA compliant. A car could handle it, but even the big scooter, hell no, and no way around it. I couldn't figure out why the severe extra pain when I ate at friends' house today--at their home, comfortably, I shouldn't have had extra pain. So extra pain meds and a nap because the fatigue with it was so severe. These things rattle my bones and muscles too much.

Anyway, I had an extended strange dream probably resulting from the stresses of being out in the world on a wheelchair. In one part, I was trying to get to a doctor's office for an urgent issue--there was but one curb cut, and a store in the same strip had put out a row of signs and potted plants so that I couldn't steer past and get to where I needed to go. This actually is not an unusual occurrence, though the typical offender is something like a wayward chair at an outdoor cafe and no one around to retrieve it, a large sandwich board, sales racks or tables.

In another part of the dream, some mean woman I'll call wheelchair bitch got in my chair when I left it momentarily to open a door and ask for assistance. Then wheelchair bitch wouldn't get out when I turned around but twirled gleefully on my swivel seat. Somehow in the dream I had the physical strength to snatch her up and smack her to the ground and wheel away. My husband worried she was hurt, but I said, "nah, she's faking it." Sure enough she kept popping up everywhere because it turns out she wasn't wheelchair bitch but wheelchair demon. I'm pretty sure this section of the dream was sponsored by suppressed anger. A couple of parents on the volleyball team, were making fun of the way I was sitting last night, I guess not realizing their voices are perfectly acoustically channeled down from the top bleacher to everyone. So I'm sure everyone else thinks highly of them now (sarcasm, there's a line and I think most people get it). (My hands were braced just under my knees because of pain--"she looks like she doesn't have any arms when she sits like that"--then legs up on the riser behind because I got prodromal and truly almost passed out from pain, world started seeming weirdly far away/out of perspective, it's been a while.)

And then in the dream I went to my old ballet class in my scooter and was trying to figure out how to park myself along the wall where everyone leaves their stuff. That was sponsored by actually trying out dancing in my scooter. I found out I can do this, but it's frustrating that I can't "hop" forward in little bursts--sometime I should see if the dealer can change the reactiveness so there's not so much delay. I don't have slow reflexes and it takes forever to get it going sometime. So apparently Grace won't lurch even when I want her to, but proceeds (starts/stops) smoothly.

Monday, March 2, 2009

Arf, argh

Argh, the one organization isn't currently placing dogs and has experienced a tragedy; small organizations that do really good work can suffer during difficult times sometimes. They'll keep my application on file in case they can start up again. Another I found in our state, well known with good dogs, requires finding a home for any current dog, which I don't agree with. While I know many pets can truly distract a service dog, ours is just mellow and kind of aloof and follows most instructions (unless he's got to confront a phobia, like birds and windchimes, which is different, and leash pulling, which is also different). He gets along with others, including mice and others' cats and isn't exuberant around other dogs. He's laid back, he chills.

Another organization I applied with when I first started thinking about this doesn't place animals in our state, even though they're closer than some organizations in our state. There are others that have you share in a lot of the fundraising for the dog, but I suspect I'd be putting in money of my own that I shouldn't. I understand the reasoning for this--small organizations are on very tight budgets now, grants can be difficult to get for startups, and people should contribute and give back where they can. It embarrasses me terribly to ask for funds for my own service animal--I don't like to draw attention to myself, and I really just can't do it. No pity parade, no wondering if I'm worthy. I mean, from friends and family, yes, I wouldn't mind asking if someone wanted to donate if they could. But this is a lot of money and more than friends and family could cover.

Another organization that did great work a few years ago went under.

So, more researching and maybe the national organizations.

Service dog application

I just turned in a service dog application.

Husband's job is more likely to vanish and would need help at home long-term (he currently works at home but probably couldn't in a new job) or in a part-time job myself, whether now or later. We can't see me physically being able to work out of the house full-time. His group's project has been cancelled and he has no work tasks, though he's not been laid off yet, even while big management just cited the essential nature of his group's work today. As bad as this sounds, he's also had work projects cancelled before. There will be layoffs. Supposedly his area is essential. We'll know in another four or five weeks. {stress}

Wanted: friendly, intelligent doggy, willing to exchange minor tasks for room and board and a permanent family.