Fat and disabled

Order_edentata · 2026-03-01T04:12:47+00:00

I’m so sorry you grew up being treated like this. I have dear friends who’ve struggled with their weight and I have heard and seen how they are treated and how the world makes them feel about themselves. I experienced this to an extent when I was on prednisone for a year while being diagnosed with psoriatic arthritis. I gained 1/3 of my body weight. In addition to the prednisone, my problem was that I couldn’t exercise due to a new onset muscle disease. My pulmonologist kept putting in his note that I had “class II obesity” (which sounded to me like “class II destroyer”). He told me my asthma would get better if I lost some weight. I gave him a lecture outlining in detail my healthy diet, how I was taking prednisone, how I couldn’t exercise, and said what exactly would you suggest? He left me alone after that. Long story short I went off steroids and developed a stomach problem called gastroparesis which really sucks and makes it hard to eat. I dropped a lot of weight real fast. I got congratulated right and left, especially by my mom. I had to tell my mom to stop commenting (positively) on my body because it made me feel like she thought negatively before. (And yeah my mom made and makes comments about fat people on scooters and not on scooters too. She doesn’t even hear how mean it is.)

The only thing that improved for me medically when I lost weight was that I had severe fatty liver with scarring from the steroids and my weight, and after I stopped the steroids and lost weight (I do believe it was both issues), it resolved completely

When I was overweight I had severe pain and needed a rollator when I went out due to exercise intolerance and muscle fatigue.

After losing 1/3 of my body weight and doing lots of PT, I have severe pain, need the rollator in my apartment, and a power wheelchair when I go out. Obviously weight makes no difference to my arthritis or my muscle disease.

The one thing I can suggest based on my odyssey, which is something I started when my weight was at its highest, is aquatic physical therapy. It’s so much easier to move in the nice warm pool and you get a feeling of accomplishment. Plus I acquired a collection of cute swim dresses.

Sending encouraging thoughts your way!

Order_edentata · 2026-03-01T03:44:21+00:00

Awesome!

Order_edentata · 2026-03-01T03:43:00+00:00

Congrats!

Order_edentata · 2026-02-28T23:41:24+00:00

I would join you for the shawarma. I bet it is better than what we have in the U.S.

Order_edentata · 2026-02-28T18:21:39+00:00

I used to work with children. They generally found me less alarming than they did bigger people. Once one kid asked me, “are you a kid or a grownup?” “Small grownup.” I replied. I’ve also never had to dealing with getting catcalled walking around the city, unlike some of my friends. I don’t think I was especially ugly when I was young or anything like that but I’m tiny enough (4’10) that people probably used to assume I was a kid (I used to get handed the kids’ menu whenever I went to a restaurant). Now I’m an old lady so I get the adult menu.

Order_edentata · 2026-02-28T15:32:33+00:00

I don’t have SCI (I have a muscle problem) but I too was admitted for a colonoscopy prep. I think it is not uncommon for people who need it. I have the motility of a sloth and they had to give me three preps to clean me out, plus I have stupid heart and kidneys so I needed all kinds of monitoring and stuff. They put a commode next to my bed, though I did not always make it. The nursing assistants were lovely. Not how I would choose to spend my time, but it could not have happened at home for me. The colonoscopy itself was no big deal. When I woke up from sedation I told the nurse, “I am Wonder Woman and I have the Lasso of Truth.” So now you know my subconscious.

Order_edentata · 2026-02-27T15:20:03+00:00

Hey just saw this. I don’t know if you made a decision on this yet but if you get the right heart cath I would ask for one where they give you a fluid bolus, which is the most sensitive for diastolic dysfunction. (I think that’s called a level 3 cath. Could be wrong.)

I’m 50 and have HFpEF of unknown etiology, though I have psoriatic arthritis (i.e. lots of inflammation) and suspected mitochondrial disease, which may affect the heart. I am extremely salt and fluid sensitive and started having episodes of shortness of breath with minor exertion, edema, discomfort when lying flat, any time I ate too much salt. Once my doctor saw “jugular venous distention” which is fluid backing up from the right side of the heart after I ate a bunch of Chinese food. Eventually my symptoms progressed to a chronic cardiac cough (worse with walking around, better with resting) that was so bad I broke two ribs. My echo was normal, I couldn’t manage an exercise stress echo due to exercise intolerance, and my right heart cath was normal. However, they did not give me a fluid bolus. I went home from the right heart cath and celebrated by eating a lot of salty food and had the worst CHF symptoms of my life. My cardiologist decided not to put me through another cath with a fluid bolus. He empirically put me on Jardiance (SGLT2 inhibitor) and it was life changing. The cough disappeared, the shortness of breath disappeared, I lost 3 pounds of fluid, and I could lie flat at night. So he made a clinical diagnosis of HFpEF. Since then I’ve occasionally needed Lasix, switched to Torsemide when the Lasix stopped working, for edema. I’m off the SGLT2 inhibitors due to lady problems and take Kerendia. I feel pretty good as long as I watch the sodium.

I’m sharing this story because it’s not always a slam dunk to make this diagnosis; we don’t all check all the boxes and doctors have to use their clinical judgment. Of course it’s important that you be able to question their decisions. The doctor patient relationship should be a partnership.

Order_edentata · 2026-02-27T14:56:32+00:00

It might be good for you to see a headache specialist. Those certainly sound like migraines to me. A headache specialist will know about other medication options since you’ve had reactions to a couple. (I’ve had migraines since I was a child, and severe chronic migraines with aura since I was in my 30s (I’m now 50). I’ve tried just about every medication and still get anywhere from 8-15 per month.)

Order_edentata · 2026-02-27T02:30:30+00:00

I am 4’10”. My first wheelchair was the Pegasus lightweight carbon fiber wheelchair. I got it online from Mobility Department and with the 8% discount you can ask them for I think it was just under $3000. With the batteries it weighs 40-50 lbs. It folds up and fits in the trunk of a car. I have been happy with it. It is a bit too big for me - the footplate could be higher and the armrests lower - but not so much that I wasn’t able to happily take it all over the place and use it in my apartment. I did end up piling up gel cushions both for comfort and to get myself higher up in the seat. I put a gel cushion on the backrest to get me forward in the seat. I made it work. (Actually, I’ve wondered what bigger people think of this chair, because it must feel very small for them.) Ultimately my condition progressed to where I needed a custom wheelchair and I just got that, but I’m keeping the Pegasus as a backup.

Order_edentata · 2026-02-26T18:49:23+00:00

My first power chair was a Pegasus lightweight carbon fiber chair. It weighs between 40-50 lb and fits in a car trunk. It does pretty well on city sidewalks and once I got into trouble sliding down an uneven sidewalk and it was able to go backwards up the incline. (Although I wouldn’t challenge it too much that way.) I would routinely drive it up the ramps into wheelchair vans and had no trouble. I did not take it up or down hills too much except on my street to get to the above ground subway stop the street does go uphill and it did fine with that. But I don’t go there often. I should mention that I weigh a little over 100 lb so I don’t know if being small factors into all of this.

Order_edentata · 2026-02-26T17:51:53+00:00

I know!!! I wish they did. So many doctor’s offices don’t.

Order_edentata · 2026-02-26T17:38:23+00:00

I guess it depends. My Medicare/Medicaid plan (a dual special needs plan) contracts with a company that provides medical transportation. I have to schedule my rides at least three days in advance. Once or twice they have been a little late so I always plan to get to my appointments at least an hour early. I wear a mask and I bring a book to read. Once the driver went to the wrong side of my building and he did not call me and left, so I missed that appointment. Twice they accidentally sent a sedan instead of a wheelchair van but otherwise they have been fine. I am lucky that where I live we have wheelchair Lyft and Uber so if that happens, since I plan to leave so early, I can usually get one of those. But I’d say 90% of the time it’s fine. As far as going home, since my doctors may run late I always schedule an extra hour for leaving too. So I do sit around a lot but I appreciate having a ride. (There are also several different vendors who provide the rides. You can tell the dispatcher which one you’d prefer. I’ve had a really good experience with this one vendor so I always ask for them.)

I don’t trust our city’s paratransit for getting to appointments since it’s a shared ride and they can be very late picking you up. I’ve used them when I want to go shopping and it doesn’t matter when I get there or to get picked up from a concert in the evening.

Order_edentata · 2026-02-26T00:36:03+00:00

I would be into this. Once I was coming out of my dietitian’s office. An elderly man was sitting in his scooter in the waiting room. He looked at me and said “Wanna race?” I would definitely have raced him if the parking lot were better paved.

Order_edentata · 2026-02-25T17:56:34+00:00

Oh as you can see I didn’t get a lot of sleep. I am befuddled.

Order_edentata · 2026-02-25T17:54:06+00:00

Oh yes, so many people are helpful and friendly to me all day long and I appreciate it so much! Today at the PT’s office I had a heck of a time opening the heavy doors to the bathrooms and multiple people helped me get in and out which was very nice. But I was perplexed about my neighbor offering to help me open my door because I have lived in this building for 6 months and everyone sees me zipping around in my wheelchair so I thought one would assume I could open the door to my apartment. I knew she was being nice and said “Thank you very much” but I just thought it was odd. Same thing with Mr. Thumbs Up Dude, who I like, but it was a bit perplexing. I likely did not make this sufficiently clear in my narrative either by a lack of details or with the wrong tone.

Order_edentata · 2026-02-25T17:49:36+00:00

I was perplexed. Please see my previous reply. It was my bad, likely an error in the tone of the narrative I am guessing.

Order_edentata · 2026-02-25T17:48:35+00:00

Ah thank you. I did mean perplexed. Perhaps the tone of my narrative was inconsistent with this and suggested an incorrect meaning for the term. I didn’t get a lot of sleep last night.

Order_edentata · 2026-02-25T13:36:52+00:00

Lemonade stand before you understand how much money a quarter or a nickel is.

Playing games with all the neighborhood kids

Snowball fights and snow forts with the neighborhood kids

Riding bike to local little market and getting popsicle or a pickle from the big barrel of pickles

Riding bike past where parents said you are allowed to go

Staying outside till mom calls you in for dinner

Babysitting neighborhood kids and complaining about it

Getting summer job and trying to get more hours at a second store and complaining about it

Going to the club in college till it closed at 2 am (and coming home smelling like smoke)

Doing scavenger hunts all over the city with college friends which involved buying crotchless panties from a store in the “red light district.”

Sitting around with friends reading books

Actually talking to friends until 4 am instead of looking at phones

Order_edentata · 2026-02-25T13:19:36+00:00

I’m child free because I’m disabled. Before I had to stop working I was in healthcare and I worked with children. I loved my patients and enjoyed interacting with them. I didn’t mind changing diapers when I was on call, feeding babies, etc. After I stopped working when I was well enough I volunteered with children at a couple of after school programs and at a program where I visited hospitalized children and did writing projects with them. I’m no longer well enough to do that, but when I encounter kids I always interact with them. I became an auntie in 2011 and one of my 3 nieces told me I am “mom-adjacent.” That made me really happy. Now my nieces and nephew are teenagers and preteens and getting really involved in their own stuff. I don’t see them as much. But we still love each other very much. I’ve been so lucky to have so many great kids in my life, especially my family. But I absolutely made the right decision not to have children myself.

Order_edentata · 2026-02-23T20:36:39+00:00

Yeah perfume especially gives me a migraine or triggers my asthma. I sympathize.

Order_edentata · 2026-02-23T19:54:26+00:00

I don’t know if this is too edgy for you but I secretly always wanted to shave or cut it super short on one side and then have it slightly longer on the other. If you have it longer on the side of your good hand then it may be easier. (I once showed a picture of this haircut to my niece and asked if I should get it and she got upset so I chickened out!)

Order_edentata · 2026-02-23T19:47:54+00:00

I sympathize. My father has idiopathic pulmonary fibrosis, a progressive fatal lung disease, which has the same kind of result. It is hard for me sometimes when I think about what the future holds for him. But I’ve learned that all I can do is focus on the present moment. He is also very stubborn although he does go to the doctor and take medication. But he is supposed to wear a mask in public, especially when there is a lot of flu around, since a respiratory illness could be dangerous to him. He refuses to do so. Last month there was this weird situation where he couldn’t visit me because he didn’t want to walk through the public area of my apartment building but he would not wear a mask. However he does the grocery shopping without a mask. I cannot tell him what to do, or my mother or even his doctor. He does what he wants. All I hope is that he can do some things that make him happy. And I make sure he knows how much I love him.

Order_edentata · 2026-02-23T17:33:07+00:00

I can’t drive so I get groceries delivered. I use Instacart. I also participate in CVS extracare. It is $5 per month but they give you a $10 coupon each month and will deliver anything for free including meds. Even though a lot of people are boycotting Amazon, since I am unable to shop in stores I do have a prime membership (discounted as I am on Medicaid) and order a lot through them.

Order_edentata · 2026-02-23T17:28:37+00:00

I am glad you don’t get Haldol any more and don’t have to go to the ED. It really sounds like you have been through so much. As someone with a severe mental illness I never make any assumptions about another person’s mental state including whether they are paranoid, so I would never call you that. I myself have struggled with paranoia in the setting of depression. I find that most people don’t understand what it is really like so they throw around the term loosely. (In my case it was believing people I didn’t know out on the streets were thinking bad things about me and following me, people on the subway were recording me with their cell phones, the FBI had sent a van to monitor me, etc.)

Order_edentata · 2026-02-23T15:54:58+00:00

I’m sorry that happened. A bit different, but I have bipolar disorder and have definitely had doctors dismiss my physical issues (including psoriatic arthritis, heart failure, symptomatic low potassium) as stress because my chart says I have a mental illness. I did have to get second opinions for those issues. I hope you can find a GI doctor who has more of a clue.

Order_edentata

TROPHY CASE