This was not the way I’d planned on making this announcement, but it seems that chaos theory is in effect, and I’ve given up for the moment on doing things “just so.”
I got my powerchair repaired last week. I really thought it was finally, truly fixed, but I had no opportunity to test it because it was raining every day. Water + electronics = bad idea.
Then Saturday dawned bright, sunny, and clear. I woke up early to allow time for my PCA to take Barnum and me out for an adventure. Part of the reason I had to wake up early is that my infusions have been taking about two-and-a-half hours, twice a day, which keeps me stuck in bed even more than I already am, which is really aggravating.
I had thought the infusions were so slow because the pump was faulty, so I got a new one from the infusion company, and it was still super slow, maybe even slower.
Pump: Not Working?
Then I decided probably my PICC line needed to be “roto-rooted,” so the nurse and I used an enzymatic treatment in it (“Cath-Flo”) to dissolve the fibrin sheath that always builds up in my lines and prevents blood return, among other things. After doing the Cath-Flo, I did get blood return again, but it didn’t speed up my infusions.
PICC line: Not working?
Spending the first few hours of my day infusing has meant that it’s been very difficult for me to do as much training as I want with Barnum. It also often prevents us from going anywhere, because by the time my infusion’s done and I’m up and about, my PCA is leaving, and the next one doesn’t come till it’s getting dark and/or buggy.
So, we loaded my chair into the van, and went to the center of town (about three miles away), to the library. My PCA unloaded my chair and brought it around to me.
Barnum had been very good in the car, doing sits, downs, nose targeting, eye contact, etc. He was calm and didn’t vocalize. I was quite pleased with him.
However, our biggest challenge is always what happens when Barnum gets out of the van away from home. That’s usually when he loses focus completely, forgets I exist, doesn’t know how to sit on cue, pulls on lead, etc.
Barnum: Um, working. . . ?
With Jersey and Gadget, I trained a default sit upon exiting the van. This was so that they were always under control upon exiting. If the doggy is sitting, he can’t bolt into traffic or take a whiz or snork up somebody’s dropped food.
I have tried to train a default sit with Barnum, but he gets so excited about going anywhere that I have only recently managed to get him to sit upon exiting the van in our very own driveway when we haven’t even gone anywhere. That, in itself, had been a big accomplishment I’d just have him get in the van, sit, get out of the van, sit, lather, rinse, repeat. So, he doesn’t have a default sit yet, but at home now, most of the time, he will sit when cued after exiting the van.
So, we are in the (exciting!) library parking lot. I sat in my chair outside his door. My PCA opened the door, and I cued him to sit in the van. I clicked and gave cheese. Sit again, C/T. Sit, C/T. Then, I cued him to jump out and clicked while he was in the air, hoping he’d turn to me for his treat, and I could then cue a sit. I did, and he did! Yay!
He popped out of the sit when I clicked, so that gave me the opportunity to cue another sit, which he also did. I c/t for that, and then just kept c/t for him staying in the sit (I know!) while we were in the parking lot.
[Release the winged pigs to soar to the azure moon!]
Barnum & Indoor pchair: Working!
Was this the beginning of a day in which Barnum was perfect, focused on me all the time, followed every cue, and never pulled on leash? No, of course not. However, he was much more biddable, focused, and interested in c/t than he’d ever been before in a strange location. For example, most of the time, his leash was loose, which is really saying something! Also, most of the time, he was very eager to earn treats.
My PCA drove home, because her shift was ending soon, and Barnum and I started to walk home. We had a lovely time. He pooped, which was great, because he used to not poop away from home. (I had my poop bags with me, of course.)
We went into the Town Hall to observe a No Nukes rally. He’s heard live music before, so that didn’t bother him. The only thing he reacted to was everyone bursting into applause. Apparently, he’d never experienced that before. He startled, and then he settled right down again. He wanted to snorffle people and — even though I managed to cue a couple of simple behaviors — he was having trouble focusing on me, so we left after just a couple of minutes. It’s a good start for our first trip into an indoor public venue (except when he was a little puppy).
He got to experience a lot more traffic than he’s used to, too, since usually only a couple of cars ever pass us on our walks. There were motorcycles and all manner of vehicles passing by, because we were on our town’s main road, and he became less interested and able to ignore the vehicles as time went on.
Two preschool girls wanted to pet him, so I had them “help me train Barnum” by asking them to wait to approach until he was sitting, then pet him, then give him a treat. If he broke his sit, they backed away and came back when he sat again. He was excellent with them. Very calm. He did snorffle one when we were done practicing sitting for petting, which was a cause for much giggling.
Further down the road there were six beautiful horses in a paddock who all came to the fence, looking very friendly. So, I swung over to say hello. I petted some muzzles and offered a cherry, which nobody was interested in. Barnum was at first quite concerned about these HUGE animals that were snorting and swishing their tails and committing other strange acts, but after seeing me talk to them and pet their muzzles, he got bored and didn’t care about them anymore. Awesome! (For the record, he met horses and cows when he was a puppy, but I don’t think he remembered them.)
We kept heading home, and then I stopped at our town general store. I left Barnum outside, because it’s hard enough for me to maneuver in there, and he is just not ready for training in that kind of cramped, food- and smell-intensive environment. So, I left him tied up outside with a friendly teenager who was happy to pet him and watch him. I bought a snack for myself and a few biscuits for Barnum. I heard him distress barking after I’d been inside for a couple of minutes, so now I know that’s something we need to work on. He doesn’t do that at home, but I guess being left with a stranger in a strange land is different.
We went another distance. It was hot and dry, and Barnum was drinking a lot of water. I stopped at a friend’s house to get his bottle refilled. Eventually we stopped on the side of the road so I could have my snack and Barnum could rest. It took a while, but he eventually did lie down, which was another first — lying down and relaxing away from home! Yay!
I was so happy! A real day out, like a regular person! My chair seemed to be in good condition. Barnum was showing his maturity; I was thrilled with him. I decided I would write a blog post declaring that I had a working dog and chair. Yes, folks, he is officially my SDiT again!
The walk helped me figure out exactly the service-dog leash design I wanted to ask my friend Karyn to make me to fit with this chair. I was pondering whether I should ask for purple webbing, to match the chair, or royal blue, to match Barnum’s working backpack. (Pictures of Barnum in his gear in an upcoming blog, or up now on our Facebook page.)
We set off again. We’d probably gone about one-and-a-half of our three miles home when it started to rain. Oh no! Then it stopped. Phew!
We kept going. It started to rain again. I headed for the sides of the road that had the most leaf canopy as cover, and for a while, we stayed relatively dry. I emptied one of Barnum’s treat bags and put it over my chair’s controller (the joystick and controls box). It rained harder and harder, until it was a major downpour. The only way it could have poured harder was if it was mixed with hail. It was very bad. I was trying not to panic.
We came to a fork in the road, and I couldn’t read the signs, so I just kept straight without thinking about it. Since I go out so rarely, I don’t really know my way around my own town. A man in a truck came by and asked if he could help. He said he could give me some tarps and a raincoat. I said that would be great. He drove off to get them.
I kept going, as fast as I could, trying to get home before the chair got too wet. I avoided puddles and kept trying to drive under the leaf canopy as much as possible.
Suddenly, I realized that the road did not look familiar anymore. A car came by with two teenage guys. I asked them if this was my street, and they said no, it was (another street). I believe I swore, loudly. One said, “Oh, you just need to go back and turn around,” telling me how it was no big deal, and I looked at him in utter disbelief because he had apparently not grokked that I was in a WHEELCHAIR, not a CAR, and that going a significant distance to turn around in the pouring rain was kind of a big deal!
I asked them if they could please, please call my PCA and ask her to come pick me up. They said they don’t have cell phone reception. Well, duh! We don’t have cell phone reception in our town!
I said I know, but when you get home, when you get where you’re going, can you please call? They didn’t know if his mom would be home, etc. Basically, they didn’t care about me and they didn’t want to help. That is not typical of my small town, but in their defense, I think they were baked.
Barnum and I turned around — he was enjoying the rain, very cool and refreshing for him — and beat it back to the intersection. The nice guy in the pickup came back and gave me a raincoat, which I put over the control box and armrest on that side, and also put a tarp over the back of the chair. I asked him to call my PCA, and gave him her number.
I turned on my headlights, because now not only was the visibility bad for other drivers, but I couldn’t see behind me because of the flapping tarp. These are very hot lights, and I had to constantly check that all these highly flammable materials were not flapping too close to them.
I was trying to go as fast as I could, but that encouraged Barnum to pull. It was impossible to go quickly and do the loose-leash walking protocol, so I eventually decided that this was enough of an emergency — trying to keep my chair from dying — that I’d let his LLW go to hell under the circumstances.
Eventually my PCA drove up. I asked her to take Barnum home and come back with my van to take my chair home. She did, and we eventually got the chair in the van, after doing everything wrong several times because we were panicking and couldn’t see and I was exhausted and not thinking clearly. Upon arriving home, we wiped down every part of the chair we could. I had managed to keep the underside dry. I also thought the joystick hadn’t gotten too went, but it’s really hard to know. Furthermore, some controllers are more sensitive than others, and you never know if yours is ultrasensitive till you kill it. I plugged the chair in to charge and hoped really, really hard that it had not gotten damaged by the rain.
I was worried about the chair, but I was also elated that I now felt confident enough in Barnum’s progress at home and beyond to declare him an official SDiT again! In fact, I plan to start taking him for very, very short trips inside local establishments (such as stores or our library), as soon as possible.
The next day, I went to unplug the pchair charger and see if the chair was working. The charger’s fault line was blinking — a very bad sign. I unplugged it, flicked on the chair’s power switch, the lights came on, then they flickered out. That’s all she wrote. It’s been dead as a doornail since.
Outdoor pchair: NOT working!
I spent a couple of days raging and crying. The problem is that this chair has had problems since the very beginning — and it did seem to lose power at one point on Saturday, before the rain. So, it’s possible that it died again because it’s a lemon and that the rain had nothing to do with it. OTOH, one of the most likely ways to put a chair out of commission is to take it out in a rain storm or spill a drink on the controller, so it could simply be that the controller needs replacing.
The problem is that it’s a one-and-a-half hour drive in each direction to get it repaired, and I won’t know for sure whether it’s the controller till we get there. And what happens if they replace the controller (for a few hundred dollars, since it could well be my fault because I was out in the rain), and then it dies again? People have told me I should return the chair and demand a refund and get another chair, but the problem is that there is no outdoor powerchair option for someone in a rural area like me, who has to go up hills and across rough terrain, through a traditional vendor. There are chairs made specifically for off-roading, and they cost $15,000 to $20,000!
So, if you can’t drive, and you rely on a powerchair for mobility — and when Medicare won’t pay for a chair that can handle outdoor conditions (because their policy is that you’re only eligible for a chair if you need it to get to the bathroom and the kitchen and bed; if you use it outdoors, that is considered “not for its intended purpose,” because, you know, if you’re disabled, you’re not supposed to have a life. You’re just supposed to be able to eat, sleep, and piss) — then what the hell are you supposed to do? Well, if you live in the city or in suburban areas, you can probably get around in a chair that was not made for use outdoors.
People keep asking me about scooters. There are powerful four-wheel scooters that cost much less than powerchairs, and I used to have one, but I’m too disabled to use one, now. You can’t recline or have elevated leg rests, and the biggest deal of all is that you must holds your arms straight in front of you, gripping the handle bars the whole time, sort of like riding a bicycle. That was tiring for me even when I was way less disabled than I am now. I’m doing better than I was a couple of years ago, so in a moment of optimism, I tried just holding my arms out in “scooter position” to see how it felt, and after literally two seconds, I couldn’t do it anymore. That was depressing. (Thanks, Lyme disease!)
People also ask me, well, what about your regular use (indoor) chair? Couldn’t my PCA drive me to the store or town center or wherever I want to train with Barnum, and I’d use that chair to get around in the parking lot or store? Nope. There’s no way to get the chair into the van; it doesn’t work with my van’s lift. I either need to get a different lift (ideally, a platform lift that will work with any of my chairs or any future chairs), or I need to get my daily use chair adapted for my current lift. Or, I need to figure out how to take the lift bar off my old chair so I can access the battery compartment, and buy new batteries for my old chair that is adapted for the van lift, but has almost zero juice in it and is generally in lousy condition, and use that for going places (which is currently how I go to the doctor or hospital). But I hate to put any more money into that chair, in the condition it’s in. (Medicare stopped covering it the minute I got my new chair, even though I couldn’t use my new, indoor chair for close to a year because I was outgassing it.)
So, I finally called the people who built my (big, purple, dead outdoor) chair, and we decided that I would come out, and they’d check the controller, and if it was the problem, they’d replace it, and I’d pay for it. These are brand-new controllers, not recycled. I believe they are the same as the one I just got (and possibly ruined), which I really liked, so I’m still holding out hope. I am also planning on writing and bringing with me a contract for us both to sign, warranting the chair to continue working without repairs for some period of time. Because if it craps out again, I am so done with them, and I will return the chair and demand a refund.
But, before we can drive the hell out to get the chair repaired, we have to get my van repaired! That’s right — something else that ain’t working right. My van is currently making three different kinds of worrisome sounds, as well as giving off gasoline fumes (which makes me sick, due to my MCS). Wrangling two people who can take the van to the mechanic and two people who can bring it home on the same day is always stressful, and this time is no exception. And I’m sure, because it’s an automobile, that the repairs will be several hundred dollars, right?
Van: Not working
The van is now nine years old, so the repairs will start piling up, but I can’t get another one because nobody makes cargo vans anymore! This was my only option for a wheelchair-accessible, all-wheel drive vehicle (and the most MCS-accessible option for me) and they are no longer manufactured. Apparently, the only big AWD or 4WD options are now SUVs or pick-ups, neither of which accommodates a chair lift. The current trend for solving the problem for vehicle accessibility, as vans go the way of VHS and audio cassettes, is to lower the floor of a vehicle. Guess where a lowered floor is a really, really bad idea? Bumpy, hilly, country dirt roads! Where I live! The other wheelies I’ve talked to about this have basically told me I have to keep the van running forever.
Then, yesterday, I woke up and started my infusion at 10:30 and went back to sleep, figuring the pump alarm or Barnum would wake me up when it was done, two hours later. (Why waste awake time on infusing?) When I woke up at 1:30 PM, only 10 ml of the 50 ml of medication had gone in! It just stayed there, at 10 ml, no matter what I tried, so I finally did it manually, as an IV push of 40 ml over the course of an hour, which you’re not supposed to do, I think, but I’m a DIY kinda gal when it comes to health care.
Meanwhile, I called my nurse, who thought I probably needed a new line. I called the infusion company and begged them to deliver a new pump right away, as a last, desperate attempt to make sure the problem was indeed my PICC line. I tried all day to reach my doctor to ask her to put in orders for a replacement line with the hospital, which eventually my doctor did do before leaving for the weekend. (My doctor takes Fridays off.)
The infusion company delivery person came with the pump and said he needed to take the old one back. I didn’t want to give up the old one because of course the new one reeks of fragrance (as does everything else from the infusion company), whereas the old one has outgassed by now. I pleaded with him to just give me one day, and I would return one of the pumps tomorrow.
Last night I set up my infusion with the new pump (enclosed in a zip-loc bag except for the tubing coming out), and lo and behold, it infused in 40 minutes! Yay! Yay! Yay! I don’t need to go to the hospital to get a new line!
In summary, here are the current scores.
Working Breeds:
- Dog (Barnum, Bouvier des Flandres)
- PICC line (left arm)
- Pump (fragrancy Bard Mini-Infuser)
- Helpers (driving me to get chair repaired, driving van for repairs. So grateful to them!)
Non-Working Breeds:
- Van (Chevy Astro Cargo, call name “Big Green Monster”)
- Powerchair (Purple FrankenChair)
– Sharon, the muse of Gadget (definitely was working till he stopped), and Barnum, working SDiT!!!
After Gadget 