I hate gatekeepers.

I've been running into gatekeepers my entire adult life. Trans women telling me that I'm not trans if I'm not willing to sacrifice my family and the dream of having kids for transition. Women (both trans and natal) who say I'm not a woman because the fact that I can't correct my genital deformities (both due to medical and financial issues) isn't making me suicidal. Women who say I can't be a woman if I want to take advantage of my deformities to get another woman pregnant. Members of the LGBT who say I can't be trans and bi because I'm conservative. Conservatives who say I can't be conservative because I'm bi and trans. Other political affiliations who say I don't belong with them because I don't check all of the boxes (I can't be liberal because I oppose abortion and believe in personal responsibility. I can't be libertarian because I oppose the legalization of drugs. All sorts of good crap I run into with politics).

And now I've run into a whole new kind of gatekeeper. People are now telling me that I'm "not disabled enough" to use mobility assistant devices. My legs have been giving out off and on for the past year. I've been to doctors, had ultrasounds on my legs, had MRIs to rule out neurological issues, and they can't tell what's going on. They've told me that they can't see any medical reason why my legs keep giving out, and it's not atrophy because even when I was behind a desk all day I was walking several miles each day. It's not my weight, either, because I've been steadily losing weight since April. If I were just getting too fat to walk it would have started when I was 312 lbs, not waiting until I got down to 280 to start up.

It started out fairly benign. At first it just took more effort to walk. I'd be doing fine and suddenly it would feel like someone strapped a 500 lb. weight to me. I was still able to walk unaided, but it was pretty slow going. Then it reached a point where I would be shopping and I had to use the cart as a walker. If I would have let go of it I would have been on the floor after three steps. So I bought a pair of crutches. I didn't always need them, most days I could have left them in my car with no ill effect, but I always carried them with me just in case, and I used them whether I needed them or not because it would be easier than explaining to someone why I was carrying them taking long swift strides and then hobbling along when I got to electronics. To avoid atrophy I never put any weight on the crutches when I didn't need them, but when I did need them I wouldn't be able to get to the carts or back to my car after putting the cart away without them.

Friday I was in Walmart. My legs started shaking, so I started using the cart as a walker. They kept shaking, so I put more and more of my weight on the cart handle. Eventually I had so much of my weight on it that it started to flip back, so I went down on my knees to prevent that and got my crutches out of the cart. With the help of a young couple I got back on my feet, but where previously I only had to put a quarter of my weight on the crutches I had to put every last pound on them. I could only move them forward 2", otherwise I would have been too far down to catch myself on them, so it would have taken at least 45 minutes just to get to the door and no telling how long to get to my car. Fortunately an associate came to the rescue with one of those electric scooters. I put the most vital stuff from the cart into the basket of the scooter and apologized to the associate for making them have to restock the rest of the stuff, but the woman that helped me back on my feet started pushing my cart for me while her husband or boyfriend pushed theirs. They said they were getting ready to check out, anyway.

I felt bad taking a detour because they were going out of their way to help me and they had an infant with them so they probably didn't want to be there for too long, but I went back by the pharmacy and bought a wheelchair. I checked out, and I also grabbed the diapers and a couple of outfits out of their cart to pay for them (didn't even have to tell the cashier to bag them separately from my stuff), then the greeter waived the "no scooters in the parking lot rule" so we formed a convoy. The man followed me to my car (the woman took their stuff straight to their car to get their daughter out of the cold) and an associate followed behind him carting my wheelchair. After we loaded up and I thanked them the associate even took the wheelchair out of the box before putting it in the back of my car so I could use it that night.

When I got to Pricecutter's (a grocery store) I found that the tool that came with the wheelchair wasn't sufficient for removing the bolts necessary to put the leg rests on. I could have done it, but it would have taken forever, it was 24 degrees, and I was freezing so I decided I didn't need them. Because of the lack of leg rests I had to put my feet forward, I could still move my legs but I couldn't hold them up for more than a few seconds, wheel myself forward, put my feet forward, wheel myself forward again, etc.

A woman in a wheelchair suspiciously asked me which "verts" (I'm assuming she meant vertebrae) I broke. I knew from her tone that I was going to have trouble with her since the fact that I was moving my legs seemed to send up a red flag for her. I told her it wasn't a spinal injury, explained that I didn't know what was going on with my legs and the doctors were just as clueless, and told her what happened at Walmart. When I confirmed that right there in the store was the first time I had ever been in a wheelchair she complimented me on how little time it took me to learn to control it (they basically steer like a Bobcat so if you know how to run one of those you can master a wheelchair pretty much as soon as you get in it), then her expression changed and she tore into me.

She said "so you're not paralyzed?" I said no, and she said "then why the **** are you in a wheelchair? You're mocking me all over here. You're mocking me as a woman with those fake boobs (and she poked one of my prostheses so hard that I thought it was going to rupture), with that ratty wig, and you're mocking me as a paraplegic by joyriding around in that thing. Get up, take off that wig, cover those fake boobs of yours, and give that wheelchair to someone who needs it." She was leaning in so hard to get in my face that I was worried she was going to fall out. That terrified me, because basic decency would have required me to catch her if she did but at the same time she could have spun it to make it look like an assault if I did have to catch her.

So this woman was a double gatekeeper. Told me I can't be a woman, attacked my trans status, and she told me that I'm not "disabled enough" to be in a wheelchair. Now maybe I could have stuck with the crutches, but someone would have had to carry my groceries for me and it would have taken hours to go from my car to produce to the register and back to my car.

I just did a 90 degree turn, went around her, got to produce, and she was following me the entire way shouting "this man (she kept putting emphasis on "man") is faking!" She would have followed me out to my car, but she was so worked up over me that she forgot she had items in her basket, and while she rolled through a checkout lane, it was just to keep up her harassment of me so an employee stopped her.

This actually hurt. I'm already self conscious because while I couldn't walk at the time, it's the reason I even got the wheelchair to begin with, I'm already feeling guilty because the vast majority of the time I'm in it is precautionary. There are days, sometimes even weeks, when I don't have any problems with my legs, but I can't predict the spells and by the time they start it's too late to get back to my car or even to the entrance for a scooter.

Right now I'm getting ready to run by work to check my schedule for tomorrow, then to my parents' house for New Year's Eve. I could probably walk the full 7 miles right now and then the five miles from my parents' house back home. Then again, I could get up after posting this and find myself dragging myself to the shower. And then I could put in a full day of work tomorrow without any issues, go on through the week, and Friday morning get up out of bed and immediately end up in the floor.

So when I'm in the wheelchair I'm already feeling guilty, because 80% of the time I don't need it. I could easily get in, fill a cart, check out, and get back to my car without even having to lean on the handle. But I'm always alone. I know a woman in a similar situation to mine, she sometimes needs a wheelchair, but she's always with her husband so she can walk around the store, then if she needs the wheelchair he can help her to a bench and go get it for her. I don't have that option. If I'm in a store and the need arises my only options are to walk back to my car on my crutches taking slow 2" steps or, if I forget my crutches, just sit in the middle of the floor and hope someone's merciful enough to get me a scooter from the entrance. Worst case scenario I'd have to drag myself back to the entrance and hope someone doesn't step on me.

So I'm already carrying guilt when I'm in the chair. When I had to run to the store yesterday the entire time I was in that chair I was thinking "what am I doing? I'll be walking through my front door and that woman over there will probably be in her chair until she goes to bed. I feel like I'm making light of her situation using this." Then I remembered what happened Friday and started thinking that since I don't have anyone to help me, and I was very fortunate that the couple there was nice enough to take pity on me, I probably need it as much now as I needed it Friday just in case it happens again.

So until I have a girlfriend or boyfriend who can run out and get my chair for me if my legs give out I'm already going to feel guilty every time my use of the chair is strictly precautionary. It didn't help one bit that at a time when I couldn't walk a woman was trying to make me feel guilty because I could still move my legs. That actually hurt worse than her attack on me as a trans woman.

You have a problem and you need something better than an 'idiopathic' diagnosis.

relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown

I am not a doctor, but my guess is that you have a vascular problem. I say this because you listed your weight and you are overweight with all the problems that entails. I think you need to keep a very detailed log of your daily activities and then keep searching for a doctor who will listen to you. If you can afford one, get a data recording pulse oximeter (~$70) and a blood pressure cuff (~$30) to add the data to your log. This will go a long way to helping determine your problem.

I am 72 with COPD and CAD (Coronary Artery Disease). I look just like you would expect for a 72 year old to look. But there are times when I simply run out breath and I have to sit down - anywhere. I have been know to sit in the middle of a store aisle while I recover or a pile of clothes in a department store. Most people simply walk on by (a sign of our humanity, I guess) but there are those people who stop and offer to help. I hope you start to find more people like those who offer to help me. There are times when I wish I had a motorized scooter to get around, but I am not there yet.

You do not deserve the comments you are getting. You are not a snowflake or a faker and you need to get an answer. PLEASE DON'T STOP LOOKING, as frustrating as it may be, there has to be an answer.

Good luck!

MichaelaSJ wrote:You have a problem and you need something better than an 'idiopathic' diagnosis.

relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown

I am not a doctor, but my guess is that you have a vascular problem.  I say this because you listed your weight and you are overweight with all the problems that entails. I think you need to keep a very detailed log of your daily activities and then keep searching for a doctor who will listen to you. If you can afford one, get a data recording pulse oximeter (~$70) and a blood pressure cuff (~$30) to add the data to your log. This will go a long way to helping determine your problem.

I am 72 with COPD and CAD (Coronary Artery Disease). I look just like you would expect for a 72 year old to look. But there are times when I simply run out breath and I have to sit down - anywhere. I have been know to sit in the middle of a store aisle while I recover or a pile of clothes in a department store. Most people simply walk on by (a sign of our humanity, I guess) but there are those people who stop and offer to help. I hope you start to find more people like those who offer to help me. There are times when I wish I had a motorized scooter to get around, but I am not there yet.

You do not deserve the comments you are getting. You are not a snowflake or a faker and you need to get an answer. PLEASE DON'T STOP LOOKING, as frustrating as it may be, there has to be an answer.

Good luck!

Thank you. I had my vascular system checked in my legs. I've had lymphedema for the last three years. They did an ultrasound on both legs and said there are veins that could benefit from being sealed, but they were minor veins and talked like there wouldn't be anything more than continued swelling if I couldn't get it done.

I thought it might be tied to my lymphedema so I talked to a therapist who was showing me how to get it under control. She said it could lead to ulcers which could lead to infection, but I didn't show signs of infection and in all of the cases she's worked with she has never seen anyone lose the ability to walk short of their legs turning necrotic from infection. She went above and beyond, even telling me her next day off so I could meet her at Walmart so we could walk around a bit and she could look my legs over if it happened while she was there.

So I met her, walked around with her and her daughter while she did her shopping, and it happened. She undid the bandages (I was wearing compression bandages at the time to get the swelling down), looked them over, felt around on them, and said she couldn't see any issues. She looked at my ultrasound results after my last visit and said she didn't see any issues there that could cause it. Didn't even cost me extra. Just spending some time with her on her day off while she did her shopping. She sent me to other doctors and they couldn't find anything, either. I'm going to start checking into neurological possibilities. It could be a short circuit somewhere in my nervous system.

I see from your info panel, the one with the PM and email buttons in it, that you're from California. Most department stores, grocery stores, basically any store that has carts in the US has electric scooters by the carts for customer use. I got a manual wheelchair because if I can't exercise my legs by walking I can exercise my arms by pushing (plus the electric ones are expensive and I hope to get this sorted out so I don't need one for too long), but having that built-in basket makes shopping a lot easier than trying to balance everything on your lap. All you have to do is ask a greeter at Walmart, most grocery stores they're out in the open so you don't even have to do that much, they'll ask you about your condition, and bring one out for you. With COPD and CAD you wouldn't have any trouble getting one, though you wouldn't be able to use it to go back to your car.

Plus at your age they wouldn't probably even ask about conditions. My mother is your age, just turned 73 back in November, and she gets insulted because they actually offer her the use of one when she goes into Walmart from time to time (she's proven that she can beat my 16 year old nephew in a foot race so we all find it funny that they offer her one). You might not feel you need one walking in, but as I've found with my wheelchair it's better to be in one and not need it than it is to need one and not be able to get to it.

Keep looking and don't let any ulceration begin as that will be very tough to treat.

About 5 years ago I started to develop angina and it became severe in the summer of that year. My cardiologist is a senior professor of cardiology at Stanford Hospital. He put me through every normal test that they use to look for horses (typical problems), including three angiograms and they found nothing. The cardio-intervention group finally put a stent in my LAD (Left Anterior Descending artery, AKA the widowmaker artery) and nothing happened.

I finally demanded that he start to look for zebras. He presented my case to the cardiology case group and they went looking for something called a Myocardial Bridge using a very specialized angiogram - and they found it. In my case, it was a congenital defect in my heart that took 67 years to show up, and when it did, it did so in spectacular and dangerous fashion.

Two weeks later, on 12/14/2014 I was on a surgery table with my chest open, my heart still beating they 'unroofed' about 2 cm of my LAD that was embedded in my heart muscle. I spent 8 days in recovery and my angina was reduced to ZERO. My case, and several other similar cases were written up in a cardiology journal - yay! I got my fifteen minutes of fame the hard way.

I offer my tale of personal medical history because you cannot give up - you CANNOT GIVE UP LOOKING FOR A SOLUTION. There is an answer out there, somewhere. If you hear hoof beats, don't be surprised if they are zebras. Keep looking.
___________________________________________

I always find a way to tie my life's experiences into politics, but here I must say WE NEED UNIVERSAL HEALTH CARE.

I have been very fortunate in my life to always have had very good health insurance. In 2014, I was covered by Medicare plus an Advantage plan. The cost of finding the cause of my angina and repairing my heart was a bit over $1.2 million. ONE MILLION TWO HUNDRED THOUSAND DOLLARS. My out of pocket expense was zero, none, nada, zip, nothing...

We need universal health care, for cases like mine and for cases like tiffany_elizabeth's.
____________________________________________
The paper I referenced is at https://med.stanford.edu/news/all-news/2016/10/unroofing-surgery-relieves-debilitating-symptoms-of-heart.html. The lead author is Jack Boyd who also was my surgeon.

Another co-author was Jennifer Tremmel was the Cardio-interventionalist who used the advance angiogram procedure mentioned in the paper to map my myocardial bridge.

Thank you Stanford Hospital.