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!
Howdy, howdy! How’s everyone doing this wonderful Wednesday? Things here are happening. Dad’s been trying to get a generator installed and everything is happening all at once with that this week. I also had my “Mobility Evaluation” with my PCP yesterday (April 14th). So, I thought I would give you all a quick update on the Wheelchair Saga (part 1 is here). Don’t worry. The post will be almost as quick as my appointment!
According to my previous post, we left off after my phone interview with Universal Med Supply. After that, I received like ten reminders to go to my doctor’s appointment. As if I’m the unreliable one in this situation. Although, I will admit that Universal surprisingly did what they said they were supposed to do. They sent the doctor the paperwork and even got in touch with the office to explain exactly what is needed. Before the actual appointment. Color me impressed. Not that I would’ve known any of this if I was relying on them to keep me updated. Luckily, my doctor’s office has been fabulous about letting me know when they receive things and generally keeping me updated on their end, so I didn’t bother the sales dude at Universal too much. I did send him one email over the two week wait to let him know my doctor had confirmed she’d gotten the paperwork for my appointment. But not my usual amount of pestering people for updates.
The appointment itself was super short. We got in early and were out within 30 minutes (total). Everything the doctor needs was stuff she could pull from my chart. Granted, I’ve only been seeing her a year and a half or so, but she took over the practice from my previous doctor. The doctor who delivered me. So, new doctor has 40 years worth of charts on me if she needs them. Mostly, Universal insisted she get a height and weight for me, both of which are in my charts. Apparently she asked if she could just use my last visit info so I wouldn’t have to come in (I saw her for a 3 month check up in February and go back for another in May), but that wasn’t acceptable. And what do you think the paperwork was all about? That’s right. It’s to prove that I’m cripple enough that I deserve a wheelchair (the only means of existing outside of a bed for me), but not so cripple that I should just be put of my (read: everyone else’s) misery. The doctor seemed surprised by this, but it’s the same thing I have to prove every single time I need something. It doesn’t matter what I need. I have to prove I’m cripple enough. Even though my diagnosis is one of the “never getting better” ones. It’s like insurance makes things as difficult as possible in the hopes that you to get tired of fighting and just fade away. Oh wait. They do. But anyway, the appointment went well.
I have an email out to the sales dude asking what the next step is, whether they have behind the scenes stuff to do, what I have to do, etc. It was after 6:30pm when I sent it, though, so maybe I’ll hear back tomorrow (today?). Wednesday, as I sent it on Tuesday. We’ll see. I’ll do another update when I know what’s going on.
Hello, hello! How’s everyone doing this lovely first day of April? Things here are okay, I guess. We aren’t doing April Fool’s because this year has been enough of a joke. Anyway, I recently mentioned that I was going to try to get a new chair soon. My current chair is starting to throw random hissy fits and being a general drama queen. She’s almost 8 years old and I’m not exactly the easiest person to live with, so it’s time for a new one. I’ve just been putting it off. I tried to find a new supplier, but ended up just asking the one who got me my current chair. I had reasons for not wanting to work with them again (mainly because they try to foist Invacare chairs off on people, namely me), but the other companies I reached out to either didn’t answer emails or were beyond useless, so I just stuck with the company that I know. I just have to be firm about what I need and want. So, here’s how it’s going so far…
On March 26th (we’ll call that day 1 of the process), I emailed Universal Med Supply (the company that got me my current chair). My Quickie S636 is no longer in production, so I did research and ended up deciding I want a Quickie Q700 M with basically what I have on my current chair. There are a couple of things I couldn’t find online (the back cushion I currently have and the light up wheelie bar casters, for example), so they might not be available anymore, but most of it seems doable. Medicare/Medicaid is supposed to cover Quickies. Anyway, I explained what I wanted in my email and asked if they could do it. The service department forwarded my email to the sales department. I guess they didn’t realize I was CCed because they hemmed and hawed and ended the email by saying if they couldn’t get the chair, they would just tell the patient (me) that they only had Jazzy chairs. I wrote back that I know my chair isn’t made anymore and that the one I want is a new model and don’t try to foist a Jazzy off on me. Again, this is the company that tried to pawn off an Invacare chair they had in stock on me last time. After I called them out, I got an email, text, and phone call from a sales dude who thinks they can get the chair. He did apologize and informed me they don’t even have Jazzy chairs, then he mentioned another chair I’ve never heard of that they have in stock as a back up. In no uncertain terms, I politely told him I want a Quickie and nothing else. He believes they can do it.
The first step in the process was to schedule a “Mobility Evaluation” with my PCP (primary care physician). Sales dude said to schedule it for two weeks out because Universal is supposed to use that time to interview me, get the paperwork together that the doctor will need, then get in touch with the doctor to go over everything. I made my appointment on Monday for a couple of weeks from now. Universal called me yesterday (the 31st) to ask a bunch of questions they should already have the answers to. The woman who did the interview did explain that she had to go over everything because it’s been 8 years since I got a chair, so Medicare/Medicaid requires updated information even though I’m never going to get any better. She then proceeded to text me a picture of an Invacare chair to make sure it was what I wanted. I told her I want the Quickie Q700 M and texted her a link to the Sunrise Medical page. Explained that was what I want with tilt and recline. She said okay.
I emailed sales dude right after the interview to find out what my next steps are and make sure they’re going to get in touch with the doctor and why that lady had an Invacare chair listed instead of the Quickie. He didn’t know why she had the wrong chair, but assured me that he has told everyone what I want and that the “field operations” team definitely knows. Supposedly, they’ll be getting in touch soon for some reason. It’s unclear to me why at the moment. But for now, I just have to wait until the doctor appointment. That means I’ll probably pester sales guy next week to make sure they got in touch with the doctor. But mostly, I’ll be spending the next few days making a list of everything I want and need, plus any questions we have, so I don’t forget anything when they come out to prepare to actually order the chair.
Initial summary of the process thus far: this is the main part where I have to prove I’m cripple enough. I have to do this so very often that it is tedious and annoying. Also, throughout the entire process, I will have to metaphorically stand my ground about wanting a Quickie and not let them try to give me something I don’t want. Yes, I’m a Quckie girl. Yes, it’s basically like Ford vs. Chevy. But also, Quickie is still the only legit brand I found that offers motors that go 8 mph. Sure, you can get something that looks like a manual chair strapped to a riding lawn mower base that says it goes 12 mph. I mean, I’m Texan, but I’m not that particular brand of Texan. A legit company covered by insurance and 8 mph motor upgrades (probably not covered, but I’ll try) is good enough for me!
Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are about normal. We have reservations at Texas de Brazil for Thanksgiving this year. Dad hasn’t felt like cooking lately and no one ever invites us anywhere, so we made our own plans. Do you have plans for Turkey Day? Anyway, I don’t have much to ramble about lately, but while making the reservations, I started thinking about the Dallas location and how it was “accessible.” I usually try to stick with stories about cripple privilege and the good things that come with being disabled, but I see a lot of people talk about their experiences with accessibility that really isn’t accessible. Things that don’t really bother me, but apparently make other people uncomfortable. I don’t want people who read my blog to think I’ve never run into these issues, because I have. So, here are a few examples of accessibility that isn’t really accessible that I’ve encountered in daily life.
When they say “It was accessible…”
1. At Texas de Brazil in Dallas, their accessible entrance was a ramp in the back by the dumpsters that led to a hallway by the kitchen which led up front. We haven’t been to this location in years, so I don’t know if they’ve renovated or something. Anyway, I never thought much about it, but apparently entrances like this make people feel like they’re something to be ashamed of, trash smuggled in through a back door. I can see where they’re coming from. I never really cared as long as the service was good and the staff didn’t get annoyed. But the real reason this kind of entrance isn’t actually accessible is because someone has to go to the front entrance to let them know I needed to use the ramp. There are disabled people who go out alone. If they can’t get in the front entrance to let someone know they need the ramp at the back entrance, it’s not really accessible, is it? I’m always with someone, so it’s not a big deal for me, but it’s still weird. Anyway, there are other locations that are far more accessible, but we actually stopped going to the Dallas location because our van bottomed out getting in and out of the parking lot.
2. The Mansion at Turtle Creek’s accessibility was kind of wild. It’s been just about 10 years since we went. My 30th birthday. So I really hope they’ve renovated, but I doubt it. Anyway, we get there and the initial entrance is perfect. No steps. Nice people to get the door. Inside, there are two or three steps up to the dining area. No built in ramp. They bring over these two little ramps that fit the steps perfectly that they can line up with my wheels. Okay, cool. But it’s so steep that Dad and one of the waiters has to assist me just so I don’t flip over. Technically accessible I guess, but it’s actually pretty dangerous for me and whoever has to assist me. Plus, it was kind of embarrassing to require so much of a todo just to get up a couple of steps. Overall, it got the job done, but it wasn’t really all that accessible.
3. This is really the only one that ever pissed me off. SMU. The accessibility at that school is so hit or miss. In some of the older buildings, they have elevators that barely fit a skinny person standing up. Yes, I graduated forever ago, but those elevators still exist. Still. I’ve asked. The accessibility answer was to move my classes to other buildings. The excuse for not installing larger elevators? They can’t afford it. Meanwhile, all the sports crap was constantly being upgraded. There was also a running joke when I was there that SMU didn’t care about anything needing repairs/upgrades as long as all the fountains worked. Other accessibility features that weren’t accessible were the door openers. Even on the new buildings, they were either too high, set off to the side where they weren’t even reachable, or they were tiny little things you had to stick your finger in a hole to get to. There were only like 3 that I could actually use myself. It was so annoying.
But yeah. Accessible things that aren’t actually accessible are an ever-present issue. I just try to ignore them as much as I can. I’m lucky I don’t go out by myself or it would be a much bigger problem. What kind of accessibility issues have you encountered where accessible wasn’t actually accessible? Feel free to share your thoughts or questions here or on my social media pages!
Hello, hello! How’s everyone doing this lovely Wednesday? Things here are usual. Medicaid has decided it’s that time of year to prove I’m still worthy. Poor. Cripple. Whatever. So, I spent most of the day filling out a 20 page form. None of the answers has changed except how much Social Security I get, but I still had to trudge through the entire form anyway. Now, I just need to take a picture of my ID and get copies of my bank statements from April through July. Easy enough, right? But no. My bank just overhauled their system and even though everything was supposed to be up and running on Monday, they don’t have online access to any statements but June. Ugh. If that’s not up today, I’ll have to call them and convince them to email the statements to me. Once I get those, I’ll send everything to my CLASS case manager and she’ll fax it to Medicaid on my behalf so they’ll realize I’m on that particular program and hopefully not argue with my eligibility. If they had told me a week ago (before my bank decided to “improve” things and I could have just downloaded the statements) or waited until October, which is when I usually have to renew, I probably wouldn’t be complaining. I just hate having to call people. And I hate redundant forms. I just hate the whole process of being reminded I’m a poor cripple leeching off of society. Anyway, it’s late and I don’t feel like coming up with something nice to ramble about. Here’s a pretty picture by Yuumei instead of a real post.
Hello, hello! How’s everyone doing this wonderful Wednesday? As I was thinking about what to write for this post, I was faced with a couple of stark reminders of why Medicaid and proper healthcare and assistance for people in times of crises are super important. You know… all that stuff the Republicans are hellbent on getting rid of in order to seemingly help the deficit so some rich people can get tax breaks which will add trillions more to the deficit than they save by gutting social programs. Anyway, I’m starting to rant and that isn’t what this is for.
My first reminder of why these programs are important was the batteries that were installed on my chair today. The old ones were dying pretty quickly and I wouldn’t have been able to afford them out of pocket, so we started the process to get them replaced. When did this process start? A week ago? It couldn’t take that long to just get batteries, right? May 22nd. I started the process on May 22nd and they were finally installed July 1st. Don’t be fooled when people tell you that countries with universal healthcare have ridiculous wait times. Ours are usually worse or about the same. Cutting funding to Medicaid will only make those times worse for the people lucky enough to still be covered. It’s going to make a lot of things worse.
The second reminder is the most important. My friend’s newborn nephew has heart issues and requires surgery. Before they can perform surgery, there’s an infection that has to be taken care of. There’s no telling how long this baby boy will have to be in the hospital. A friend of the family created a GoFundMe for them because the financial burden of having to take time off work, travel back and forth to Seattle, pay for lodging and food, and also worrying about their daughter is already taking its toll. They need help for a situation that no one can ever plan for, but instead of having access to government programs designed to help in these situations, they have to rely on people on the Internet who try their bests to help each other. So, I’m sharing the link to their GoFundMe below in the hopes that some of the kind people on the Internet will see it. Share it on your pages if you’re willing. The wider the audience, the better.
Anyway, stay strong and have a good Disability Pride Month despite everything going on in D.C. We matter. We are not burdens. We are not leeches. We deserve to live, not just survive.
Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are okay, I guess. We had a nice little BBQ with the Minion, his wifey, the family, and the new neighbors across the street on Saturday. Other than that, things keep going wrong for Dad and I’m dealing with government bullsheet surrounding my benefits. Because of that, I forgot July is Disability Pride Month. I’m not feeling very pride-y. Every time I finally feel like my benefits are settled and I’m coasting along, the government decides to “improve” something that screws everything up. And it doesn’t help that I have to fight for everything I need. I’m dreading the upcoming election. If Cheeto gets in and that Project 2025 gains traction, everyone is going to be screwed except maybe super rich white folks. So, even though I’m not a fan, fingers crossed for Biden and the status quo! But I’m starting to ramble. This is your yearly reminder that Disability Pride Month exists. Disabled people are worthy of all the same things “able” people are. We are not burdens or drains on society or dirty little secrets. We are human beings. And, according to WHO, approximately 1 in 6 people are significantly disabled and that number is rising. Yay for fun facts!
Anyway, I decided to share an explanation of the Disability Pride flag. I might have done this before, but I’m too lazy to check my previous post.
Ann Magill’s original idea contained bold colors and a zigzag design, but after complaints from individuals with sensory issues (the design triggered migraines and created a strobing effect when scrolling), she revamped the idea with straight lines and muted colors that were grouped differently to avoid the negative effects. Here are some of the meanings behind the flag:
Black: The black background symbolizes the mourning of disabled people who have been victimized by ableism or lost to disability-fueled violence, abuse/negligence, and death.
Diagonal stripes: The stripes cut through the darkness (i.e., barriers).
Multi-colored: The disability pride flag includes all six standard international flag colors to indicate that the disability is a global thing.
Green: Sensory disabilities (blindness, deafness, lack of smell, lack of taste, etc.).
Hello, hello! How’s everyone doing this lovely Wednesday? Things here are okay. I’ve been procrastinating like usual, despite having an outline and basically knowing how the first couple of chapters should go. I blame Dad and TV, but I just can’t find the motivation to actually write. I don’t know why. So, I’m procrastinating even more by trying to find a faster way to type. I use the onscreen keyboard with the cursor, which is great, but slow compared to how I used to type. Anyway, I don’t type anymore because the laptop keyboards sit too far back for me to reach. I don’t know if I lost some range of motion or if touchpads got bigger or what, but I haven’t been able to actually type since two computers ago. So, I’ve been looking for alternatives to the onscreen keyboard. Fun, no? No.
I figured since I couldn’t reach the keyboard, I’d try getting a cheap plugin one that I can pull right up to me or into my lap to see if that would help. It’s the one pictured above. A Snpurdiri 60% wired keyboard. I got it on sale for less than $20, so I won’t feel too bad if it doesn’t work for me. It comes in different colors and it’s backlit, so that’s neat. The keys are easy to press and it’s small enough that I can pull it to me and into my lap, then get it back onto my computer and push it out of the way. But it’s too tall for me to use at the moment. I’ll try again when Dad’s not busy. Maybe a towel or something to prop my arm on will help. But it’s cheap and cute enough. If it works, huzzah! It’ll give me a better idea of what I actually need in a decent one when it dies. If not, meh. I’ll try something else.
The other option I’m considering is dictation. I tried Dragon Naturally Speaking when it first became a thing (yes, I’m old), but it was horrid and turned me off of that kind of program before I even started hating my voice. But Windows actually comes with dictation software now (it’s under the ease of access settings) and my camera has a microphone, so I don’t have to buy anything just to try it. However, I don’t like this option. Talking is not my favorite thing. People can’t hear me. I’ve been accused of mumbling. I’ve been told I have a slur (which I don’t believe I do, so wtf?). I use a ventilator, so I usually have a tube in my mouth. Even when I remove it to speak, I still have to repeat myself all the time. And I speak softly, which seems to create more issues. Talking is just not something I enjoy. At all. Plus, I run out of breath easily. So, this would be my last ditch effort to speed up the word flow and strictly used when writing.
I’m sure if I looked harder for adaptive typing aids, I could find other things to try, but I won’t. I’m not really that worried about it. Sure, I hate taking an hour and 45 minutes to type 1,000 words with the onscreen keyboard, but I’ll keep doing it. It’s not really a big deal in the grand scheme of things. I’m just procrastinating and I know it. At least I’m being semi-productive about it.
Do you use any special typing equipment? What about dictation software? As always, feel free to leave your thoughts or comments or questions here or on my social media pages!
Shawna's Blog of Doom 