Hello, hello! How’s everyone doing this lovely Wednesday? Things here are usual. I was planning to toss up a picture of Mardi because she got groomed on Monday and the wheelchair guy came out today (Tuesday), so I didn’t expect to feel up to blogging, but I feel mostly okay and this post will be pretty short anyway. So, first you get cuteness! Then, an update on the Wheelchair Saga. You can parts 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, and 10.5 at their respective links.

Mardi says woof grrrrrr yip. You can translate that however you want. The other two are too skittish for grooming and we don’t want them snapping in a panic, so that’s why you don’t get to see them with little ghostie bowties. Plus, they run away when we try to get pictures. They’re around, though.

As for the wheelchair, Universal ordered new armrests like the ones on my current chair that don’t flip back and they have two posts that sit in receivers, so I feel more stable even though I know they aren’t (brains think weird thoughts). They’re what I was hoping for in the first place, but I guess John West can’t read since I specifically said “No flip up. As close to what I have as possible.” on the list I gave him when he came out to get the order ready. Dude can’t use a tape measure, so I don’t know why I expected him to be literate. And now, I’m just being a dick, so moving on!

Gustavo (the tech who knows the most about Quickies and lives in Florida) came out on the 20th and spent a few hours tweaking and adjusting things. Quickly found out that Sunrise (the makers of Quickie) didn’t include the receivers with the new armrests. So, he tried to adjust the current armrests to work for me. It’s so close, but the joystick mount keeps everything just out of my reach. The mount with the new armrests is supposed to do what I need, but we won’t know for sure until the receivers come in. The new armrests should also make mounting my headrest easier. There’s also a problem with the joystick that requires a new module so I can control everything the way I want. So, more parts to wait for. But Gustavo got the footrests back far enough I can use the ugly hangers. I got in the chair again. I still can’t drive it, but it was much better than last time. He even has a fix for the cushion problem which is great because I don’t think I can adapt to the seat that came with the chair. And that’s the update!

I think Gustavo is hoping the parts come in before he goes back to Florida. We’ll see. But yeah, the update is basically that more waiting is in my future.

Hello, hello! How’s everyone doing this wonderful Wednesday? Things here are usual. I called Medicaid again yesterday because I was still waiting. It seems like it worked, though. I haven’t received the official acceptance letter, but the renewal disappeared from my benefits page and both my end dates (I get Medicaid and a Medicare Savings Program from the state) have switched to a year from yesterday. That’s one less worry for now. Now, I just have to keep worrying about the wheelchair. Which is what this post is about! If you want to catch up on the Wheelchair Saga, here are the previous parts: 1, 2, 3, 4, 5, 6, 7, 8, and 9. I’ll try to keep this latest installment short.

On Friday, September 18th, Universal sent Ricky (a different tech) out to work on the chair. He doesn’t know anything about Quickies either, but he’s a little more willing to experiment with things than Randy was. He spent like five hours here trying to get the joystick to mount directly to the armrest with what he had on hand. It didn’t work. No matter what he and Dad did. But he did want to see me in the chair, so I finally got to sit in it! I learned a lot. I think Ricky and Dad did too. Plus, Ricky got Gustavo (the most experienced tech they have who happens to be in Florida) on a video call. Gustavo mentioned maybe getting a Quickie rep out here who knows what they’re doing and what kinds of modifications are possible. Dad’s been saying they should do that all along, but honestly, Universal is the kind of company who will exhaust every one of their techs and the client before they’ll shell out money to bring in specialists. Even though it probably costs them more in the long run. It’s annoying.

Anyway! Here’s a revised list of things that need to be fixed/adjusted/tweaked before the chair will work for me.

1. Joystick issues. It needs to be mounted directly to the armrest instead of six inches away from it. The button still needs programmed. And I need to figure out the best mounting places for the two button boxes.

2. Footrests. Those hangers that I hate because they’re ugly? They also stick out way too far, so my toes barely reach the footplates. I need swing aways because I can’t straighten my legs to get my shoes on/off or my pants off, so we have to be able to flip the footrests back out of the way. Otherwise, I probably would have tried the behind the knee model that’s standard with this chair. But my feet also sit fairly wide apart, so don’t think that model would work for me anyway. I just need hangers that go straight down instead of jutting out. Tried my old ones on the new chair, but the part that goes into the mount is too small. Boo.

3. Armrests. They’re too high. That’s always been a problem with my Quickie chairs. Even when they’re at their lowest, we have to put a piece of wood under my seat to get me where my elbows can both rest comfortably. Hopefully these go lower (they’re completely different from my old chair, so maybe), but it’s not a problem that really worries me as much as the first two issues.

4. Headrest. It’s a matter of finding a new mount or clamp. The mount on my old chair is for a round pipe. The new chair is all boxy angles. Hopefully they can figure something out since it’s literally their job. But I also feel like it’s an issue Dad and a trip to the hardware store could solve if need be, as a long as everything else works out. So, I’m not losing sleep over this one. They don’t make side mounted headrests (I can’t be the only person who needs one, can I?), so it’s always an adventure rigging one up when switching chairs.

5. Thigh supports. Once everything above is taken care of and I can sit properly, we need to fit those to keep my fat ass from sliding around every time I hit a bump.

6. Ventilator. After we’re sure the chair will work for me, they need to move my vent over and hook it to the batteries of the chair.

7. EZ Lock. We need to figure out how to get a bracket for the new chair and install it so I can ride in the van. I don’t know if Universal can order the bracket or not. That’s usually done through the van modifications place and they charge ridiculous amounts to install one (they won’t just order it and give it to Dad for the cost of the part).

8. Seat cushion. My left leg went to sleep when I was in the chair, but I couldn’t sit normally, so it might turn out to be fine. We’ll have to see how I feel once I’m positioned properly. We may or may not need to get a Roho (my air cushion).

That’s all I can think of off the top of my head. It’s still a daunting list, but there are really only a couple major issues that need to be overcome. The rest is either stuff we deal with every single time I switch chairs or just things that need tweaks. It makes me feel a little better. This turned out to be rather long. Oops. My bad.

Hello, hello! How’s everyone doing this wonderful Wednesday? Welcome to September! Things here are still “hurry up and wait” all around (Medicaid, wheelchair, etc.). I wrote 15,365 words in August and I wrote at least a little every day. I plan to do it again this month with my only real goal being “write more than August.” Anyway, I don’t have much to ramble about, so here’s another update to the Wheelchair Saga. You can find parts 1, 2, 3, 4, 5, 6, 7, and 8 at their respective links. Here we go.

Background: Randy from Universal Med Supply brought the chair out on July 28th. Two parts were wrong. It should’ve taken a week tops to get the replacements, but for some reason it took them a month (no idea who dropped the ball on this). I spent a month having to pull teeth to get answers and timelines. I’m not a happy Cyn (for those who don’t get the reference, I’ve been known as CynicalCripple online since the Yahoo chat days and people still call me Cyn). Anyway…

On August 31st, Randy brought out the replacement parts. Problem? He never bothered to learn how to program the button I ordered. Second problem? He was running so late that Sunrise Medical’s IT department was already closed, so he was going to have to come back again to program it with help. Why not just reschedule when you realize you’re going to be that late? I mean… I could have been the bigger person and told him to just try again a different day because I knew that was going to happen, but I’m petty. They want to make him make a useless trip, that’s their problem. I’m not giving them an easy out after everything they’ve done. But I digress. He replaced the knee pads with the correct thigh pads. So, those problems are at least partially corrected. Also, Mohamed didn’t send the “try it just in case” armrest pads. Again. I figure those are never coming and Dad will have to come up with something if the current armrests are too narrow to support my left side and right elbow. Also, there’s a new problem!

No one (looking at John West here) bothered asking me about what kind of joystick mount I needed and I honestly never thought about it or mentioning it. I figured a standard mount that sits against the armrest would be, you know… standard. Oops. They sent a swing away mount. In theory, it’s great. In practice, it’s not particularly adjustable and it’s way too far from where my hand would sit. My current joystick has never been very comfortable for me in that respect, but the new one is impossible. So, now I have to wait for a new mount for that. No idea how long that’s going take. Ugh.

It’s not like walking onto a car lot and driving away with something. Don’t ever think being cripple is easy. It’s mostly just paperwork and waiting.

Hello, hello! How’s everyone doing this lovely Wednesday? Nothing new here. Official status of basically everything in my life: still waiting. If you’re just tuning in to the Wheelchair Saga, you can find parts 1, 2, 3, 4, 5, 6, and 7 at their respective links. This is going to be short.

Randy came out three weeks ago as of Tuesday around 3pm. The incorrect button was supposed to be shipped priority the day after he came out. It was shipped last week. I have had to be short in my emails to get updates. Yesterday, I asked for updates. The response was swift. Universal Med Supply has received the button and the new mounting hardware for the thigh pads, but there’s still no word on the thigh pads themselves. Mohamed called the wheelchair company and is waiting for them to get back to him about what’s going on with the pads. So, yeah. Still waiting.

Howdy, howdy! How’s everyone doing this lovely first Wednesday of August? I’m grumpy and annoyed and haven’t been sleeping well at all. I called Medicaid yesterday and wasted an hour and a half of my life. Like 70 minutes of that was spent on hold. First girl was sweet but useless (they always are because I think their entire job is to transfer people to where they might need to go). She transferred me to the special escalation unit where they can answer basic questions or forward you to higher ups. I just wanted to know if my renewal was actually received. Second girl (less cheerful but also sweet) confirmed that it has been received and is actually under review. They have until November 12 to make their decision. But I really just wanted a recording saying it was received in case they try to screw me around like last year. Anyway, I’m mostly grumpy and annoyed about the wheelchair, so let’s update the Wheelchair Saga! Parts 1, 2, 3, 4, 5, and 6 can be found at their respective links. I’ll try to be quick because (believe it or not) this is not the last installment.

A little over a week ago, a guy named Randy brought my new wheelchair out and proceeded to start setting it up for me. Yay? Not really. There were things that were wrong. First off, I can’t reach the buttons on the joystick box, so I have to order special programmable buttons just to turn my chair on and off or control the speed profiles and seating. I currently have huge buttons that I have always hated aesthetically speaking. When I found a smaller two-in-one version, I was super happy. They cost Dad $525 out of pocket, which is fucking ridiculous. But for some reason, they sent a set that only had one wire. You have to plug the buttons in to make them work. In two different ports. Otherwise, only one button works. I checked. I told Mohamed I wanted the button that had two wires, so not my fault. I don’t know if it was ordered wrong or if Sunrise (Quickie maker) sent the wrong one. Either way, Randy told Mohamed and a Quickie tech what we needed and it was supposed to be shipped the next day priority after Mohamed signed paperwork. A week ago.

Another thing wrong was that I ordered thigh support pads. I got tiny ass knee support pads. I don’t know if any of you have seen my thigh fat, but it will destroy those tiny circles the first pothole we hit that jostles me into them. They could’ve sent either of the thigh pads and it would’ve been fine. Why knee pads? Who screwed up? Probably Universal, but I can’t be positive, so all I can do is grit my teeth and wait for it to be fixed.

The only other unplanned concern I have is the arm pads. I repeatedly told Mohamed that I need wide and flat arm pads. He said he would send out some different styles and we could try to make them work because Quickie doesn’t really have wide ones. They max out at about 2, maybe 3in. But there are no extra arm pads in the stuff left behind and the ones on the chair are indeed super narrow, so that’s concerning.

Other than that stuff, the chair looks great and we will make it work. I still hate the footrest hangers. They aren’t as ugly in person, but they also don’t match anything else on the chair. It’s black, purple, and green. They’re just a couple of random silverish bars. But the reason I really don’t like them is because I can’t operate them myself. The old system (like the manual hangers pictured below) have a paddle style release on the side that I can brush against a corner and they flip the footrest out sideways. The new ones are operated by a trigger style latch, so someone has to pull the trigger and twist the footrests out. I won’t be able to do that by myself. Hopefully, that’s my only loss when I finally get in the new chair. At least it’s a pretty chair.

Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are usual. The waiting game. Medicaid decided it is time for me to renew, which basically just means proving I’m still poor as well as cripple. I got everything together and sent it in. Last year they screwed me around even though I had everything faxed to them within a day of each letter I received. I called them repeatedly and was told I was fine and they had everything. Got told I was denied because I didn’t send anything in. Had to have my CLASS case manager come call in with me. Luckily, we finally got in touch with someone who knew what they were doing and that lady input everything based on what I had in fact sent in and fast tracked my approval. So, to hopefully avoid all that drama, I submitted everything online this time. We’ll see if that goes any better. Anyway, I figured I would give you a small update on the Wheelchair Saga. You can check out parts 1, 2, 3, 4, and 5 in their respective links.

We’re still in the hurry up and wait phase. Which is partly my fault. I hate the footrests that come with the Q700, so I had emailed Sunrise (they make the Quickies) to see if they could put hangers and plates from the manual chairs on the Q700. They took forever to answer, but eventually said they could do that. My chair order had only been put in a couple of days before, so I decided to ask Universal to see if they could get me what I wanted instead of the ugly ones. They asked for a hold to be put on my chair and asked if it could be done. At first it seemed like it would be fine, but it would cost extra. Then it took a week for Sunrise to randomly say no they can’t do it. I don’t know why it took so long. No idea why they can’t do it. Whatever. So, that added an extra week of waiting for nothing. The original guesstimate for delivery was 2-3 weeks. That was June 1st. Throw in the week I waited for nothing. 3-4weeks. It’s been 6 weeks.

But I did get an email from Mohamed on July 10th saying that he was told my chair had shipped from Nashville and that they should get it this week. He did inform me that even though they couldn’t get the hangers I wanted, they could do the footplates. At least they won’t be as ugly/cheap looking. Anyway, they’ll then call me to schedule the appointment to bring it out and set everything up. More waiting! Maybe I’ll have something new to report next week.

Hello, hello! How’s everyone doing this lovely Wednesday? Things here are slow. But first and foremost, Happy Pride! Stay safe and take care of each other. Anyway, I have a little news on the wheelchair front. If you want to catch up on the Wheelchair Saga, part 1 is here, 2 is here, 3 is here, and 4 is here. There’s not much news, so this will be short!

We were just entering the wait and see period at the end of part 4. On May 21st, I got the official letter from Universal Med Supply saying they had gathered and submitted everything to my insurance and that it should take 12 to 15 business days before we get a yes or no. That same day, I got a call from someone at Universal wanting to ask me a few questions to expedite the whole process. Of course they called before I was even out of bed, which I keep telling them I won’t answer before 2pm at the earliest. Usually 3pm. So, I called them back. The oh so important questions? They needed me to confirm my address. Again. For the ten thousandth time since I’ve been dealing with them and 50th time during this process alone. Anyway…

Surprisingly, it only took about 5 business days to get approval. Mohamed called me this previous Friday to let me know. He called early, but actually left an extension so I could call him back directly instead of playing phone tag. We went over everything that will be out of pocket and Dad paid for that stuff. Then, we went over everything else one more time. And he placed the order with Quickie on the 1st. The time frame guestimate for building the chair and getting it in is two to three weeks, so it’s still a waiting game on my end. Universal is supposed to call and schedule a delivery/set the chair up appointment when they get it. More after that happens!

Hello, hello! How’s everyone doing this wonderful Wednesday? Things here are usual. I wasn’t really planning on doing an update this week, but I’m running super late and have nothing to ramble about, so I thought a quick rant wouldn’t hurt. There’s actually A LOT I’d like to rant about, but I’ll try to keep it short. If you want to catch up on the Wheelchair Saga, part 1 is here, 2 is here, and 3 is here. We ended our journey last time waiting for an appointment with an ATP.

Dad and I thought we knew the ATP, which we did, but it was the wrong dude. The one we thought it was knew his stuff and if he didn’t, he knew how to find out. Sadly, it wasn’t him. It was the sales dude turned ATP from last time. In the 8 years since we last saw him, I will say he’s still more of a salesman than an ATP. Dude barely breathes lest someone else get a word in edgewise. He was completely unprepared for our meeting. Personally, if I were going to a meeting about a chair that I knew nothing about, I would’ve at the very least taken a few minutes to familiarize myself with the order forms in those two weeks before the appointment. Actually, I probably would’ve done stupid amounts of research and made a nuisance of myself to the Quickie sales people until they put me in touch with a tech I could at least video call during the appointment to help me and the client. But I’m super anal, so I don’t expect people to do what I would’ve done. I do expect a basic effort though. Dude just decided to wing it.

At some point, he asked why I was getting a new chair. When I told him it was because something was draining my batteries, he proceeded to mansplain how to charge batteries like five different times. Not just to me. To Dad. Like Dad hasn’t spent the majority of his life maintaining batteries for me and his tools and everything else that uses them. Grrrr. It didn’t help that he didn’t really know much about how chargers work.

But yeah. He’s now on vacation for a week. So, I’ve been emailing with the Mohamed dude about corrections and last minute changes. I got most of what I need supposedly except a flat back, so I’m at the point where I’m tired and don’t really care anymore. I’ll figure it out when everything gets here. Once everything is settled about what’s possible and what needs changes, they will submit everything to Medicare/Medicaid for authorization. That means more waiting. I’ll update when I know things!

Hello, hello! How’s everyone doing this lovely Wednesday? Things here are busy, yet slow. It’s weird. Anyway, I promised you an update on the Wheelchair Saga, so updated you shall be. If you want to catch up on the whole thing, you can find part 1 here and part 2 here. Yeah, it’s still going. We haven’t even gotten to the fun part (picking colors and going over everything I need). Last time, I had just had my “Mobility Evaluation” and we were waiting on next steps. Let’s go from there.

First, I waited for emails that never came. When I finally got frustrated, I sent an email to the sales eligibility address asking what was going on. Sales dude no longer worked for the company. I found out on April 28th. Today, I found out he was actually the lead dude of his department and was well liked and pretty much the most knowledgeable dude there, but he resigned for unknown reasons. I completely don’t blame him, but I wish someone would’ve let me know. Anyway, now I’m in touch with someone called Kajal who is nice and gets things to whoever can answer my questions if he can’t. So far, anyway. There’s still a long way to go in the process.

While I was waiting for emails that never came, Universal Med Supply did get me scheduled for a PT assessment. Yet another instance of proving I’m cripple enough. It was a video visit, so at least I didn’t have to be touched or anything. That was on April 22nd. The dude was nice enough, but I guess he didn’t read the pre-check-in paperwork because he had no fucking clue I have one of the Muscular Dystrophies even though I mentioned it on every single page. I was talking to him for 20 minutes under the assumption he knew my diagnosis when he finally asked what had brought all my symptoms about. Me: “… I have Muscular Dystrophy.” Him: “Well, that explains everything.” No duh, my dude. Read your paperwork next time. It’s like doctors and everyone else think we fill out that paperwork for fun or something. Ugh.

Once that was done, apparently Universal sent even more paperwork to my PCP for signatures and supporting documentation to really reinforce the fact that I’m cripple. She bitched about it at our appointment (check-up, not chair related). Dad kind of thinks she was upset about it, but I think I’m just her first severely cripple patient and she had no idea we go through so much just to prove we’re cripple. It flabbergasts people, even doctors, the shit we have to go through because of insurance and the state just to get basic needs met. It’s a lot.

Anyway, Universal said the last step before everything can be submitted for approval is for an Assistive Technology Professional (ATP) to come out. Originally they said it was to make sure the house was wheelchair friendly, which is stupid. I’ve been here all my life. Of course Dad made it accessible. They called on April 29th to set up the visit for May 1st. I told them I needed an afternoon appointment, preferably after 3pm. They were supposed to call me back to confirm. Nada. I called them on the 30th. No one knew what was going on, so they were supposed to call me back by the end of the day. Still nothing. On the 1st, after I figured no one was coming, I sent an email to Kajal that laid out my availability for this week. Nothing. On the 5th, I sent a tersely worded “what’s going on?” He emailed me to ask if this Friday would work. Nope. I already have an appointment that day which is why it wasn’t an option on my list of availabilities. Eye twitch.

As you can probably guess, I’m super annoyed by now. Finally, some dude named Mohamed calls me. He’s rambling about how they need to send two ATPs because I have some seating thing called PinDot. It takes me a couple of tries to stop his monologue long enough to tell him I don’t have that. They tried to coerce me into getting it with my last chair despite me telling everyone that I despise molded seats and they don’t work for me. Ultimately, I tried to do the fitting, but stopped there once the guy doing the fitting finally realized it wasn’t going to work for me. Just listen to me in the first place, please. So, I finally got it through to Mohamed that I don’t have that, I just have a Roho Quattro bottom seat and standard flat back. Apparently, that made everything easier. They’re supposed to send out an ATP on Friday the 15th after 2pm. It’s someone we’ve worked with before who knows his stuff, so that makes me feel much better. He’s supposed to fill out the order forms and go over everything I need and want. Also, Mohamed confirmed all by himself that they’re ordering a Quickie Q700 M and sent me the order forms so I can go through them beforehand (I’ve been researching this chair for months, so I have them, but I appreciate the confirmation that he’s looking at the correct chair).

In summary: there were some annoyances, but not as many as I was expecting. It’s not over, though. They have most of what they need to prove I’m cripple enough besides what the ATP needs. Other than some lapses in communication, things are going suspiciously smooth. After the ATP, there will be a waiting game. Waiting for insurance approval. Waiting for the chair to be built. Waiting for any adjustments to make it possible for me to use the chair. Then, the period where my body adjusts to everything. But right now, I just need to get through the ATP appointment on the 15th. More later!