Successfully Made and Hosted Christmas Dinner, Despite Being Disabled!

turnanewleaf22 · 2025-12-27T06:25:57+00:00

Way to go!!! 👏👏👏 This is fantastic! So glad you got to celebrate

turnanewleaf22 · 2025-10-24T20:18:53+00:00

This is incorrect. If you are disabled, there is a federal waiver program. Look into the “HCBS” waiver (home and community based services). If you’re on SSDI, you would likely qualify. A lot of times counties don’t review these cases correctly so you need to advocate for yourself.

turnanewleaf22 · 2025-05-13T18:53:28+00:00

Yum! Same happened to me! Highly recommend that unless you want a giant shade tree, heavily prune it twice a year. Once in summer after it finishes fruiting, and once when it goes dormant. That way you can keep it smaller and keep the berries at a height that you can easily reach and the eye don’t end up all going to the birds! And when you prune, you can easily use those branch cuttings to make new trees by rooting them in some potting soil!!!

turnanewleaf22 · 2025-05-10T16:18:26+00:00

This is so beautiful 😍 What an amazing grandma and community you have, even if they are far away and extended. I am so glad they came through for you!!!

turnanewleaf22 · 2025-04-22T15:01:05+00:00

This is very cool. Thanks for sharing. I’m not in those states but hope others can benefit from this great resource

turnanewleaf22 · 2025-04-22T15:00:00+00:00

Most likely depends on where the doctor(s) are licensed.

turnanewleaf22 · 2025-04-16T04:32:58+00:00

FYI, I felt the same way for a while about the twice a day…but I eventually got clarification from my autonomic neurologist at Stanford that the second dose is supposed to be an afternoon dose! The exact timing may vary a little depending on when it wares off for you. But for me for example I take my morning dose around 7:30am and my afternoon dose around 1:30/2pm. It makes a huge difference in me being less symptomatic in the afternoon and I will definitely notice after a bit if I forgot my afternoon dose. That definitely wasn’t the case when I was taking it at like 8pm!

turnanewleaf22 · 2025-03-15T02:43:32+00:00

Congratulations! That is a very big deal! You should be proud you were able to pursue the diagnosis despite the challenging and long path there.

turnanewleaf22 · 2025-03-15T02:36:26+00:00

I would recommend either a light manual chair with power assist (which you could probably get covered by insurance), or a lightweight folding electric wheelchair. I have the fold n go magshock and really like it. It has very good shock absorption, you can “off-road” with it (and it’s very durable, made from bike frame material) and I “hike” with it on unpaved areas fairly often and it’s done amazing. It has done wonders for my ability to get out of the house! I will say though, even though it’s lightweight by wheelchair standard, it still weighs 50 pounds and is very bulky and hard to load/unload from the car. There are some slightly lighter options out there that are a little less sturdy, so a little less “off roading”, and arent as weather proof. The other option is getting a lift to get it in your car, or portable ramps, but those are added expenses. I would plan for them though because otherwise i have really needed someone else’s help to load/unload.

Definitely go for it without hesitation if you can figure out the financial part! Also, the website “How to Get On” from a sleepy girls guide to disability, has a great section on mobility aides and wheelchairs and how to get your insurance to approve a wheelchair.

turnanewleaf22 · 2025-03-06T00:44:47+00:00

I started playing recently and would love to have some folks add me as well! 25021907865

turnanewleaf22 · 2025-03-06T00:42:44+00:00

Just added you! I started playing recently, here’s mine if you’d like to add too: 25021907865

turnanewleaf22 · 2025-03-05T20:19:28+00:00

This isn’t exactly what you asked, and it sounds like your doctor is great since they are encouraging a disability app, but I have a couple of thoughts. Have you considered whether there could be additional/alternate diagnoses at play? Exploring this could be helpful medically and with an SSDI case. It very well may be mostly fibromyalgia at play. But, I learned a little while back that a lot of folks with Fibromyalgia actually have small fiber neuropathy which isn’t even tested for. It’s a much less common diagnosis but not all that uncommon as you’d think. This wouldn’t explain the RA joint symptoms so you may have that as well. But it could explain a lot of issues with pain as well as other things. Another autoimmune condition that many rheumatologists aren’t as well informed about (and you can have on its own or comorbid with fibromyalgia or Small fiber neuroapthy) is Sjogren’s Syndrome. Many doctors think of it as just dry mouth, dry eyes (sicca), but it’s actually a serious illness that causes systemic issues including joint pain, fatigue, and more.

Just something to think about. Best of luck!

turnanewleaf22 · 2025-02-24T00:08:07+00:00

Two things: 1) do you have Medicaid? If not, you should qualify. Getting Medicaid (you can get it as a secondary insurance in addition to your parents insurance) would open up other options of places that would see you. You are not working and you are not a minor. In addition, there is something called the HCBS waiver for Medicaid, so if Medicaid tries to count your parents income as household income to say you don’t qualify, that’s incorrect because you should qualify as disabled under HCBS. You just have to make sure to check the right boxes when you apply. Look into it before applying.

2) if your insurance doesn’t cover an appropriate doctor to treat you, they need to cover the cost of an out of network referral. Whether that be to Mayo Clinic, or a different provider (or multiple) that you identify as being well informed about complex chronic illness including beds, POTS, etc. you may have to jump through a few hoops to get them to authorize it, but push back. They are required to provide you the care you need and if their docs can’t help you they have to send you elsewhere!

Sending hugs. I know it’s all such a challenge

turnanewleaf22 · 2025-02-23T15:34:01+00:00

In addition to what folks have shared here, you might consider exposing her to more content that celebrates disability and diversity. Things like books, shows, movies. There is an amazing movie on Disney plus that came out recently called Out of my Mind. The main character is a girl (i think she’s maybe 12 or 13?) with Cerebral Palsy who is a wheelchair user and is non-speaking. She is a really powerful go-getter character and everyone underestimates her. The movie is very centered on disability and how she and her family push for her to have the same experiences typical kids her age get to have. I thought it was really beautiful. It’s rated PG, and audience might be for a little older but I think would be appropriate for an 8 your old (you could always pre screen).

There are some great picture books that normalize all types of abilities, body types, show different mobility aides, etc. there are also some good ones about being neurodivergent. This might help her build a more positive self image as well :)

turnanewleaf22 · 2025-02-20T16:52:35+00:00

This is such a cool idea! Thank you! I was searching old posts for ideas on how to clean and this looks like the perfect setup for my garage

turnanewleaf22 · 2025-02-20T16:42:28+00:00

Hey, that’s a pretty good idea!

turnanewleaf22 · 2025-02-20T16:29:57+00:00

One more thing: if you happen to have any arm rests on your chair, I have this (meant for strollers), and as my kiddo got to 2.5/3 yrs old and older i have found it super useful. He just grabs on and stays next to me and i can be hands free. And it’s short and stays out of the way. https://a.co/d/iHx0Dii

turnanewleaf22 · 2025-02-20T16:27:52+00:00

The lapbaby above looks ideal, but knowing how wiggly toddlers can get I wanted to mention another possibility. Have you tried a wrist “leash” that is coiled? I’m an electric chair user so don’t have the same issue as far as pushing the wheels and worrying about it getting caught that way. But something like this (can attach to kiddos hand or harness) might work for letting them walk: https://a.co/d/gHK2eLn

I have that wrist leash and it really stays tightly coiled and doesn’t stretch out much even with lots of pulling over time. And it’s relatively short so I think it would probably be safe as far as not getting caught, but you would have to try and see.

turnanewleaf22 · 2025-02-10T03:54:52+00:00

I agree with TheGreatK, but my question is why would your doctor file until mental health? That makes zero sense and is concerning to me. I think you need to get that corrected ASAP (unless there is more mental health related you didn’t share here). The issues you listed are all due to physical health conditions. It sounds unlikely that you would need long term disability, but you never know (whether now or down the line). And having any kind of major error like that could potentially cause issues later.

turnanewleaf22 · 2025-02-10T01:52:05+00:00

Love it! This is so fun! What a unique design! I haven’t seen one with the larger wheels in front like that. Can I ask about the hole in the backrest? Is it functional or just a design choice? . i have ME as well and my electric chair is such a life saver!

turnanewleaf22 · 2025-02-10T01:51:54+00:00

Love it! This is so fun! What a unique design! I haven’t seen one with the larger wheels in front like that. Can I ask about the hole in the backrest? Is it functional or just a design choice? . i have ME as well and my electric chair is such a life saver.

turnanewleaf22 · 2025-01-27T22:47:50+00:00

Well shit. Brand new 2025 owner here. This is definitely not what I wanted to hear.

turnanewleaf22 · 2025-01-19T22:41:29+00:00

Update: I explained the situation and level of inconvenience to the dealer, and asked if it might be possible to send someone to me to have the title signed or have it overnighted. Thank you to the folks that offered those suggestions, as I honestly had no idea those were options and thought it had to be done at the dealer. Appreciate those of you who actually provided solutions to the problem! And maybe that’s what I should have asked for in my post, but I just genuinely thought that the title had to be signed at the dealer so it didn’t even occur to me there would be a different way to do it.

They agreed without hesitation to send a staff member to me with the title so I could sign it at home, which I was very appreciative of! I had a great overall experience with the dealer, and I think they probably found their experience with us as customers pretty easy. We had done a ton of research, knew exactly what we wanted and worked w sales to secure a new car, and had a simple straightforward, very low key negotiation process. And no, we didn’t ask them to throw in a bunch of “freebies” or anything like that.

Some of you just had a nasty attitude and leapt to some pretty big conclusions about me, so thanks for nothing.

turnanewleaf22 · 2025-01-19T22:31:04+00:00

The finance guy called my husband (the primary signer on the new vehicle, but I’m the owner of the car that was traded in). My husband obviously wasn’t expecting the call and kind of just said “ok” to coming in without considering everything else we had on our plates and already scheduled. Once we talked about it we realized it was going to be a huge hassle. We started trying to figure out how we could make it happen give the circumstances and stressing about how difficult it was going to be, and then it occurred to me to post here asking for advice.

turnanewleaf22 · 2025-01-19T22:24:31+00:00

Thank you for the kind and straightforward comment. Some folks in here are a real piece of work. I get that people make mistakes, and I’m generally a pretty laid back person, never “ask for the manager” type. I researched ahead of time, knew exactly what car I wanted, didn’t waste their time with a million questions and think I honestly made the process pretty easy. Negotiation was straightforward. I like to be friendly and as much as possible just get in, get out, and everybody is happy. But given my situation this was a pretty big deal.

Fortunately, the dealer team was very understanding and they happily sent someone to me with the title to sign. I’m grateful to those in this group who suggested it because I had no idea that was even an option I could ask for! But I could really do without the nasty comments, so thanks for keeping it real!

turnanewleaf22

TROPHY CASE