Thursday, December 24, 2009

Happy Holidays

Hmmm, Wheelchair Kamikaze drives a 6000Z. Maybe other people really do know what's best for me! It's difficult for me to trust that sometimes.

To those of you who celebrate Christmas, may the day be wonderful; may everyone have a wonderful holiday and New Year.

I am remembering back to a couple of years ago when all I genuinely wanted for Christmas was a good scooter and a van with lift. Wow, to have those! Without them, life would be very circumscribed.

Tuesday, December 22, 2009

Advice on Quantum 6000Z versus TDX SP?

Any words of wisdom/advice on a Quantum 6000Z versus TDX SP? They look more streamlined in person than on the web--mine will be configured similarly to what I saw in person. I could sit pain free!--and imagine myself working many kinds of jobs at least part-time with one. Not to mention more basic tasks such as preparing food for myself or paying bills or answering the front door. I am very limited on seating ability right now--I can sit up a few hours a day; with much longer than that, I get bedridden/couchridden for a few days at a time in agony. This could be life-changing! I need and want to be able to care for myself more and be more independent--I will simply have to with any kind of job my husband will get.

The tilt and recline are heavenly and I can keep myself in a slight pain-free tilt even while driving them. Wow, what a difference from sitting in the scooter. I have no complaints about my scooter and still believe it is the best scooter out there. My seating needs are just higher--I generally have to elevate my feet some to relieve pain too.

My inclination is a 6000Z--apparently Permobil is not an option with my insurance though I wish I could try it to see. The main problem is getting all the casters lined up to change direction/back up--that will take some practice!

Let's hope insurance comes through. I am glad to have assistance through this process.

Enbrel, Round 2

I injected myself today and it went fine. Only complaint is that the needles aren't quite sharp enough--trying to pierce skin with a dull needle is not fun; other Enbrel users have said the needles aren't as sharp as they used to be.

It does seem to help with the fatigue part some but the pain has been horrible. Did okay yesterday but had trouble moving at all today from being out trying wheelchairs yesterday. I think I found one that will work okay and will allow me to do much more both here and out and about--reducing pain greatly. I joked with the rep about whether I could just take the demo home--I'm sure I'm not the only one who jokes about that but yes, it felt a lot better. I even transferred back out of the scooter into it to finish our ordering details/discussion. The joystick drives a lot differently from a scooter--that will take some practice. Backing up is really difficult--figuring out which way to get it to back up since the casters aren't straight. I'm sure that in a week or so it would all come naturally.

Lead weights on.

Saturday, December 19, 2009

Doing the Hard Drugs

Well, I did it. I took an Enbrel shot yesterday. I couldn't take the pain and the inflammatory fatigue that was making me feel like I had a new 40-pound lead x-ray apron strapped to my back and others on my arms and legs. I haven't even been able to roll over in bed to get pain medicine. Instructions to husband are as follows, and I quote (hmm, watching too many Christmas movies): "Get pain medicine and the tachycardia medicine into me before leaving." Then I have to wait close to an hour. Otherwise I can't get out of bed to go to the restroom and on to the living room. I could not do anything that I needed to do this week, even sedentary tasks that would have helped my spouse a lot. Lead weights on everything.

The wrong shipment had been sent to me for the second time (latex needle caps instead of latex free) and I decided I was going to do the shot even if I had to get a friend or family member with phlebotomy experience to do it. I called the doctor and said, "I'm coming in." I would have done it without help if necessary. I wasn't going to wait for the new shipment on Monday or Tuesday, latex sensitivity or no (from prolonged exposure).

We will see. I am looking at the syringes a little suspiciously but hoping they will help. Fatigue seemed a little better last night, was able to push myself to do some in the kitchen today. Not nearly as much as I would like, but it's a start. A start after a near-absolute stop, being out of the house an hour or two a few times this week and not being able to do anything else.

It's often not been a choice at all for me because of pre- or post-surgery conditions or infections of various sorts. All right, we'll see.

Thursday, December 17, 2009

Frida and the Sea Monkeys

This awesome acrylic painting of Frida Kahlo by Kipling West features a horde of sea monkeys and a packet of brine shrimp for a necklace, an allusion to a self-portrait with Frida's pet monkey. It brings to mind items you coveted as a child but that Santa just isn't allowed to bring. You remember those were advertised in the Archie and Superman comic books? I also coveted the Kenner tree house and Weeble Wobbles that friends had, but I don't think I ever added them to my list; the old Fisher Price Little People houses were what my sister and I loved best. The sea monkeys remind me of last Christmas, when my son, who's not yet discovered the real Santa, saw his new pair of real mice and pleaded, "Mom, please let me keep the mice! Santa brought them!" Oh, the irony! I did always want the sea monkeys, though my sister and I purchased an aquarium when we were older and that exceeded any visions of sea monkeys that danced through our heads.

Christmas items are on the way--and one surprise for hubby. He's not sold his watch and I've already cut my hair. Whew! Tenuousness. I am excited--gifts mean so much more when it's difficult to get them. :)

I've been in a lot of pain. Whenever a new dose of pain medicine kicks in a bit, then I crash and sleep from exhaustion. I don't understand it, how pain alone can tire like that.

Wednesday, December 16, 2009

How Many Days Until What, O'Henry?

I don't know if the kids' Christmas presents will get here or not--the charity was supposed to have wrapped up everything by the 15th and was supposed to have gotten back to people by now. That's the least of our concerns. We have to make choices with the money and can't pay all bills--necessities. And yet I'm wondering if we should spend some on Christmas presents--for them, not for us or anyone else. We need the wheelchair van, we need insurance and utilities. I don't like decisions like this. We have been given money--we *had* to spend it on necessities or I don't know what we would have done. No internet or phone means no job search (and there was an additional phone interview today, job email to answer throughout the day). I don't like this at all. My sister and her friends are sending a Target gift card--I'm hoping that comes through soon, though I've myself made one promise to one person I just have not been able to keep, not for lack of wanting to.

I hope I never forget this, what it's like for poor people. There's a difference in empathizing and really knowing that experience. I don't have the extended experience others have, of course. I don't like the myths that say that children do worse in poverty--maybe they have fewer experiences and chances, but I also think there can be a lot of family closeness that runs deep. I guess as a college student I saw so many studies about what goes wrong for people in poverty that we probably all lived in dread of living in poverty (oblivious of the fact that many of us were living in poverty then, those of us paying our own way and young newlyweds). But what about what goes wrong when there's wealth?

It's more complicated than that, I know--crime, drugs, lack of opportunities, certainly lack of housing and basic needs--these aren't minor issues. I just feel that as a society we've lost sight of the virtue in not having. I think we're in fear, phobia, and prejudice about being poor.

The thing is, I don't think anyone would believe us that we're poor--not many, anyway. Not just in poverty, but in crisis. People want to think that things are better than they are. One friend said she is surprised that I seem okay and to be "together"--I don't know. I do have the certainty that we'll be fine in the long term, that we have a support system that will catch us.

I am sure the charity will come through. But tenuousness. All is tenuous. I used to finish the shopping before Halloween!

Tuesday, December 15, 2009

Wheelchair Seating Clinic

The seating specialist, vendor, and I all seem to be in agreement about what I need in a power chair ranging from tilt-in-space and recline to arm rest needs and specific dimensions and cushioning that will help. And the vendor thinks no question that it's medical necessity to have the tilt to be functional (for me to be functional, not the chair). The dimensions they came up with are exactly the dimensions I'd have specified if I ordered equipment myself on my own without help--I need a deeper cushion than most would choose for support, but I hadn't even mentioned that to them. So really, the best case scenario. We found out that my right femur is half an inch shorter than the left (I'm presuming because of the fracture with the growth plate)--but I sit in a way that makes the left leg seem a half inch longer--an inch difference from where I'd normally sit because of pelvic rotation. Plus there's the scoliosis in the low spine. I think I'd find it difficult to find comfortable seating even if I didn't have arthritis there.

Now the question is which chair would work best. I will try a few out at the vendors' soon. The whole process can take 3-6 months because of insurance wrangling (and who knows what would happen if I change insurance--though the same vendor is used for a number of insurance companies).

It looks like an air cushion may work best--this surprised me completely. We also discussed/tried other kinds of cushions. There should be some kind of elevating leg rest, but we're not sure if we can get that powered--I forgot to mention one issue with that since my scooter has an elevated platform.

So we're looking at a bunch of options from Invacare, Pride, and maybe Permobil. I am very thankful that I will get to try some of these out in person since there is just no substitute for doing that--that was certainly true of the scooters. Wish me luck--one thing I don't like about some is that they're not quite streamlined enough in terms of design, though I think the models we'd probably go with are more so, like the Permobils. As a younger female, design/aesthetics are still important to me, though function and comfort comes first.

We talked about the manual with power assist--the seating expert does not think that's a good idea. Really, I could use the tilt-in-space option/high back with a power chair a lot. I'll think about it, but I think she's right. If I were to have more degeneration over the next five years (not unlikely!) and had to have the continuing support, I would not be able to get a more costly power wheelchair (insurance only covers one every five years). Basically, I think of something like that as more of a luxury since I wouldn't have the sitting tolerance I would in a power chair--I'd have to transfer out more. While eventually when life is normal I'd like an inexpensive used but good manual as a backup, that's just not the priority right now. I am not thrilled with the headrest/very high back because I think it makes me look more disabled than I am, but functionally with the tilt in space it would keep me from straining neck/spine trying to hold my head up while tilted--even the slight tilt on my scooter can cause me upper back pain, though it's a wonderful feature to have and does relieve pain. I think I will have so much more maneuverability that I will be able to do far more for myself and will have less pain while out if properly cushioned.

I am in terrible pain now after being there this morning and back lying down--they get to see me at a relatively good point, early in the morning. It's just a huge relief that we seemed to be in such accord--and they're really nice people.

We do have a good attorney who's helping us with some of the other financial/house refinance or not issues. Lots to do, still hoping that contract comes through for my spouse quickly.

Wednesday, December 9, 2009

Possible Job?--Not Daring to Breathe Yet

My husband said the job interview went really, really well and he knows the senior manager from his previous company. They have to interview a couple of more people so I'm still holding my breath--we've been on this roller coaster for a long time now. This would start at the beginning of January and is for a 6-month renewable contract. Let's hope for the best (and for continuing insurance--9 months left on COBRA). Congress isn't set to vote on the continuing subsidy until after the holidays--after many people will already have to drop it because of inability to pay.

Tuesday, December 8, 2009

Bad to Worse

So we may get foreclosed on--they called today and claimed not to have any of our paperwork from forbearance. They also said we couldn't have our payments modified this month and have the past payments added on, though they had told us before that we could--starting this month. I asked if the bank hadn't recorded all the phone calls with us and if they could replay those calls; they said yes but that they couldn't pull them now. Husband has a job interview tomorrow. God, we need this!

I feel sick. Husband's going to be on the phone all day trying to figure this out, I suppose. We can probably borrow some money from family, but what's the point if we'll lose the house in a few months? Unless we can get that job--soon. Soon, soon, never soon enough.

Update: interview tomorrow, meeting with the mortgage company Thursday. Please keep us in your prayers. We need proof of income coming in. A few weeks even could make a big difference. Have been on phone with nonprofit for advice and the mortgage company, need to find an attorney who specializes in foreclosure if we can afford it. I'd say I can't take this stress but people do. What choice is there? Reaching another point of stasis is important to me, even if it's moving in with our parents. The moving process itself will be extraordinary because of disability. Security, not instability.

Monday, December 7, 2009

Too Cold!

The pet mouse has been too cold, and I can tell. She's made herself a little hive from nesting materials but I can tell that's not enough. We covered the back and the top of the cage with a towel, and I was thinking of cutting a piece of fleece or flannel but realized that still wouldn't insulate her quite enough--she'd stick it under her but not on top. So I looked up "how to keep mice warm." Gloves--insulated gloves--and we did have an unmatched one, a warm one. She's cozy now, went right to it. It's a funny little house, but it works great. The other mouse we had bought to replace the ex-companion was not healthy and never did well, alas (different pet store, we should have waited for more at the other store). This one approaches like a puppy dog when I call her or make kissing noises at her!

Saturday, December 5, 2009


The COBRA subsidies are ending this month, unemployment is at its highest since the Great Depression, families have lost their homes and are homeless, health care reform is debated in the Senate, there's still the war abroad, there is no food at the food pantries, seniors are going hungry because Meals on Wheel is drying up, but--

the news focus on Tiger Woods' affairs? We are stuck with tabloid journalism when the world needs change. Instead the media takes joy in putting pressure on people until they crack. Who cares?

We need change. I see Obamas's ratings are below 50%--why, because he's cleaning up someone else's mess, actually trying to help?

Food stamps have been renewed (don't know what took so long the first time) and we can order Angel Food. Satanic Insurance, Inc. is going to allow my husband to go off insurance--the subsidy will probably come through to late for him. Once you're off COBRA, you're off. My insurance will still increase from $323 to $650 because it's pro-rated for each person you add. So with the catastrophe insurance, we'll be paying $700 a month, double the current rate.

It's not just us--what will be the cost of people not having manageable illnesses treated in a timely way?

Thursday, December 3, 2009

Warning: Possible Scam Targeting Disability Bloggers

Please spread the word to disability bloggers (and other bloggers), just in case. I sent an email to One Sick Mother yesterday asking her to help me evaluate an unsolicited email offering a donation in exchange for an advertising link, a small internal link, which sent off warning bells.

OSM is more computer savvy than I am and suggests this link would likely virus readers' sites when they click on the blog; it could also virus your site with a fix only that company can provide. While I don't want to accuse anyone falsely, I know people's blogs can become virus transmitters in such a way. OSM also points out that the site for the company is pretty rudimentary. I know many of us are in difficult situations, but please don't.

It looks as if this particular company may target some groups of bloggers all at once--so be careful. If it sounds too good to be true, it may be.

Wednesday, December 2, 2009

Food pantry tomorrow

We have an appointment with the Catholic food pantry tomorrow to tide us over and the food stamps people will call tomorrow, a phone appointment (permitted with disability). Friday we can call the other food pantry for an appointment for more substantial stocking up. Apparently this is the Big Mama Food Pantry for the area and all other food pantries center around it and its work. You go there every 90 days, but I don't know if you can use the others more frequently if needed.

"I'm feeling much better now," as HAL once said. Somewhat. A rapidly emptying pantry and being out of most food groups makes me anxious. Chief mama job: keep babies fed and happy.

We are juggling too many medical appointments this week, one of them lengthy--three of them around doing this, plus a bunch of other matters to take care of.

I'm remembering The Little Engine That Could--"I think I can, I think I can," and am hoping that things come together. This is hard and scary!

If you have a chance, let your representative and senator know that they should pass the COBRA subsidy extension--otherwise millions are going to have to drop insurance and risk losing coverage, especially coverage for pre-existing conditions. In the health care reform bill, pre-existing conditions will not be covered until 2013.

Just more updates

Insurance agent I talked to yesterday: "How in the world are y'all making it?"

We are now $12,000 behind on our mortgage but have to start paying it again next month. With the mortgage terms redefined, I'm hoping we can get it under $1000 a month. The kids are on CHIP but my husband's and my COBRA payments go from $323 to $969 next month. My husband wants to get catastrophe only insurance at $50 a month--that leaves him with insurance portability/ability to get insurance with a new carrier. By law, I am supposed to be able to elect COBRA if my husband does not--but his insurance doesn't allow this option. We we may be having to pay twice as much as if they weren't doing this illegally (do we really have the resources to protest?--we are trying to survive). At about $1700 a month (maybe $1850 with continuing slow ebay and Amazon sales) we can't afford the house and insurance, the house and car payment and utilities. I feel like crying but I'm in such fear I can't actually do so.

Our food stamps ran out. The small food bank (you can get a few days' worth while waiting for an appointment with the big one) is closed today because of weather. The big food bank you can only go to every 90 days. I don't know when we'll get food stamps again--it took several months to get the emergency ones we should have immediately received. I'm trying to figure out whether we can get $70 for an Angel Food order by next Monday, but I hate to spend that in case we get food stamps before that. (How am I still overweight?, inactivity plus cheap food I guess.) The kids are on free breakfasts and lunches at school, so that's a help.

My husband has a job opportunity, but it is in software sales and will start off slow at best (a startup in this economy) and it may be a few months before we get a paycheck. It's anyone's guess what that will be. It also offers no insurance. So now I have to apply for disability. Normally people can continue COBRA coverage for another 18 months if they have already received a ruling from the SS administration that they're disabled. Those of us who will be on the waiting list--tough. I can get COBRA for another 9 months. Without insurance, our medical bills would probably exceed what I would make, so there's not an option. There's a two year waiting list to get Medicare once I am approved for disability. So given the one year or more wait to get disability, I may be without insurance for a few years; if there's any lapse in my coverage, I am going to be uninsurable. In other words, if my husband doesn't get a job that has insurance in the next nine months, medically I'm screwed for a long time and will not have the option of going off disability.

My husband's on the phone with a free legal aid service about bankruptcy and disability filings (bless them, I talked to the guy for a minute and he's very kind). Most "things" I don't care about, but I am worried what will happen to some belongings that are very treasured (from grandparents) and whether the people who come in to evaluate our stuff will overappraise it (couches with holes wouldn't garage sale for much; we also have tools for working of which only $1000 is exempt for each of us). I'm also worried about things being stolen from us during this process. Maybe I'm wrong, but I don't trust this process or think that appraisers would necessarily be scrupulous. So yes, there's a possibility of work/money soon, but this isn't established and in the meantime we're hitting the greatest low ever. We're receiving about 15-20 colletions calls a day.

Like so many families, we just want employment--with benefits. I received some notices about another mom whose husband died--people are taking up a collection to pay for her plumbing repair and some other needs. But she has a job and he had life insurance. I mentioned to my friend who's coordinating help that we can't help with food right now since we can't get into a food bank (we have a few things we can eat but can't squander anything), and she said that was okay, she understood. Same with a mom at the kids' school asking for donations of food for a student treat day.

It hurts to see other people getting so much help when someone becomes very ill--where was our help with housework and cleaning services after my surgeries? I'm sorry, that sounds like sour grapes. It is sour grapes and it's horrible or me to think about, to make comparisons. But my husband was and is exhausted--caring for our home, the kids, doing the errands, plus working full time--even the lawn service done by him to save money. I "need" him to do more, but how far can one person be stretched? Sometimes the house really is in shambles and I feel like we're living in piles of junk that can't be cleaned up--it's not the worst imaginable circumstance in that regard, but we need help for a garage sale for what can't be sold on ebay/amazon (we've sold a lot there). He hasn't been able to do that and everything else.

People don't understand that we're in need and I don't know how to explain. Every time I try to, someone talks about people whining too much or not being optimistic (these are people still living in very high privilege). I don't want to hear another person complain about their Christmas shopping. We're having to spend the money we were given for a few presents for the kids. We're in bad circumstances and I worry what's going to happen in the next few months--if we can get through that, I think we'll be okay. My son needs new shoes. They both need slippers. I need socks and maybe underwear. I had to ask my mom for a few shirts. I am NOT asking for money or anything, especially from those with disabilities. But my voice is one of many millions more hurting right now.

Tis the season for giving, but it's not enough and split among so many more people this year. All I want this year is a turnaround in our personal situation and for the economy/other families.

Immediate update: Our personal belongings should be fine. We thought only $15,000 was exempt--and that's easily overestimated.