Wheelchair Use; when, why and how?

KitCat

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from talking to people in other states, these are the reasons why someone could get turned down from a medicaid waiver:

1. your doc did not sign the form or check the boxes on the form that you need assistance in all areas of personal care

2. when they asked you, you did not answer clearly about all areas of personal care (pm me! I will go through it with you) :)

3. they asked you what care you received in the past seven days and you or your husband said you were not receiving help in all areas in the past seven days (the seven day thing is only in some states)

4. you have too much money

Do you think it is one of these things? Or something else? I don't know how it works in all states?

But I think this is a problem you can solve, if you can figure out what the problem is! :) I can try to help you with it.
 
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KitCat

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I don't know the value of your home. resource limit in oregon is $119,000 for a spouse, as far as I am able to tell.
 

justy

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Hi, and welcome t the forum. I first used a wheelchair to go on a 5 day holiday one hour from our home with my husband and children. Without it I would have spent every day, all day int he hostel while they went out. It was a revelation to me and makes me feel much more empowered and also in a way independent ( I know weird!).

I still cant go out too often or ill crash, but it has enabled me to have days out with my family, holidays, and the occasional shopping trip. I have a manual chair and at first had one with small wheels that my husband pushed, because I cant push myself - the small wheels meant I couldn't turn myself round if in a shop etc and many times I was left facing a wall as it takes a while for the caregiver to get used to it all too!

eventually we swapped to a self propelled model with large wheels- husband still pushes, but I can manoeuvre myself in shops or turn round when stationary etc. I sometimes get out and walk and push the chair myself, or I jump out for steps and walk up them while my husband hoiks the wheelchair up - we get looks sometimes, but most people are kind. When feeling a lot better we even went to a gig with it and I danced to the band in my chair - people around me loved it! (only managed this once)

Now I am sometimes using it in the house - as I think I may have POTs I get more done sitting and by dinner prep time I can manage just a little more if I use the chair.

Go for it! you won't be disappointed. Before I had mine I hadn't been put for a 'walk' with my dog and kids and husband for two years, or been for a day out with them. Its literally expanded my horizons, rather than the opposite. U also notice ow that a lot of people who use them can walk - not everyone in a wheelchair is paralysed or cant use their legs.
 

Valentijn

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How do/did you go about concluding that you needed a wheelchair to function better?
There were things I needed to do or would enjoying doing, but couldn't do them or would struggle and suffer due to OI (low blood pressure) and PEM. There's often a misconception that people need to be completely unable to use their legs, or otherwise completely unable to walk to use a wheelchair. This isn't true at all. Mobility aids merely exist to make people more mobile, and a wheelchair and mobility scooter do that for me.

But keep in mind that a wheelchair won't solve your problems, unless you have someone to push it. It's not like the problem is just with our legs, and pushing a wheelchair yourself is a lot harder than walking. But I'd also suggest staying away from transport chairs, even though they're cheaper, lighter, and fit into smaller spaces. Too many times I've been stuck in a corner when my pusher gets distracted, and it's very annoying. With a wheelchair it is at least very easy to turn yourself around, so you aren't staring at a wall for 10 minutes.

I don't particularly enjoy the wheelchair. It's so passive, and dependent. But it's a life-saver when I'm too sick to use my mobility scooter, or when going into shops with narrow aisles. It's also great when driving around to several shops, since mobility scooters take a while to pack and unpack, and take up all of the trunk space.

For me, the mobility scooter is best for "walking" around the neighborhood, "walking" to shops nearby, and taking on vacations where there's lots of nature or other sites to see. It really is a lot of fun, because I'm fully in control again and can go pretty much anywhere. I can even go pretty fast (jogging pace) if I want.

How did you overcome the emotional 'trauma'
I hadn't been to a store for over 6 months when I got my mobility scooter. I was frustrated by that, and with being stuck inside the house. When I got the scooter, there was no trauma at all. It was completely wonderful. I could "walk" to the shops with my fiance again, see the swans nesting by a foot bridge, choose items from the store that I wanted, etc.

I've never had any weird looks, though that may be due to being in the Netherlands where people tend to be MUCH less judgemental. Kids think scooters are great. A little one in the supermarket stopped crying every time I drove by, and the neighbor kids wanted to see how fast it could go. I've had brief discussions with other scooter users (usually older), who are envious of the stability of my 4 wheels compared to their 3 wheels, since access ramps are often very badly designed here when they exist at all. And I got challenged to a race in the supermarket by a very old man who turned out to have lived in the US for a couple decades, so we were able to chat in English.

how did you get support for using a chair from your clinician
I didn't. The Netherlands is unfortunately ruled by a psychosomatic model for ME, and it is often equated to burn-out. Even good-intentioned doctors and therapists often believe that it is curable with a bit of CBT and GET, because that is what they are told by the supposed Dutch authorities on the subject. It might be different now, especially in the US, with the IOM report being available. It pretty well trumps the quack "authorities".

And basically, depending on your insurance, you might not have many options available. Such as everyone here getting 3-wheeler mobility scooters and nearly tipping over on ramps, whereas I can easily go off-roading on rough terrain with a 4-wheeler. And the standard wheelchairs provided by local governments here are a bit flimsy (cheap) and narrow, whereas I was able to get a very sturdy and comfortable one for 200 euros.

I'm having a great deal of difficulty walking much less than a block outside my door, which means that quite often, I'm winded, exhausted, heaving for breath and getting faint if I try to walk further than..
If that doesn't warrant mobility assistance, I can't imagine what does. It's like some people think we shouldn't get a mobility aid until we're basically to sick to even use it!

I'm also really reluctant to accept needing a wheelchair on an emotional level (feels a bit like giving up or giving in) but that's my personal bias regarding labels.
A lot of people seem to have trouble with that, especially when we've been targeted by clueless quacks telling us that depending on such devices will make us sicker. But I've never looked at someone else in a wheelchair or on a scooter and thought "huh, I guess they just gave up", and I doubt you've ever thought such a think either. Why be harder on yourself than you are on the rest of the world?

That, and now I'm pretty heavy, so I hate to think people are concluding that I'm in a scooter or chair because I'm a fat, overloaded pig!
Well, I've never really cared what other people thought of me, and wasn't about to start just because I was obviously disabled now. I've also been overweight for a while, but in retrospect, my enthusiastic efforts to exercise or reduce calories usually triggered something very similar to the PEM I get now, just milder and completely ending after a few days of resting with "the flu". The fact is that chronic illness often leads to weight gain. It's difficult to avoid, especially when the expert advice has centered on exercise for so long, and they're just starting to realize that exercise is almost useless for weight loss.

But people usually respond to me in a manner which mostly depends on how I'm responding to them. I don't look upset or defensive. I make eye contact and smile, and usually get the same in the return. In fact, it's a bit unusual that I do get so much eye contact and smiles when out shopping, since Dutch people tend to be not-so-social, especially when shopping :p
 
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KitCat

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Hi @CeceNoel and a warm welcome!

I can't add much to what's already been said, but wanted to add my support for you doing exactly what you need to do in order to "embiggen" your life. @taniaaust1 hit the nail right on the head: "if you are limiting yourself due to not having one, it means you need one" and also @Kati noting it would improve your quality of life.

You deserve the best quality of life you can have.

On stigma etc - I don't know if this resonates, but I found that getting a wheelchair challenged my sense of my identity in some really difficult ways. The little voice went something like: First, I can walk at times, and for short distances, so who am I to use a wheelchair? I have a stick to lean on if I'm too unsteady. Second, this will be so conspicuous....

Realizing I would be appalled at myself for thinking this way about any other person using a wheelchair helped me get over that. I realized that part of what was going on was also my own unexamined "able" identity and biased ideas about who uses a wheelchair. Yes, I am disabled. There is no way around it. That is also emotional to confront, but it makes none of us any the less.

The fact of the matter is, I can't walk more than a little bit, often I am too unsteady to walk well or sometimes at all, and either way, the exertion of trying to do a doctor's appointment etc without a wheelchair will cause much worse effects later. I am almost entirely housebound, and a wheelchair helps tremendously getting out and about at all. Them's the facts, and facing them by getting the wheelchair really improved my quality of life.

I am also so sorry you've had such trouble getting benefits. It's maddening. Re SSDI, the very generous @KitKat just started a thread with some tips on that:
http://forums.phoenixrising.me/inde...or-social-security-disability-ssi-ssdi.45105/

All best wishes to you--
Vasha
vasha, I just saw this post :) thanks for the kind comment
 
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I've been lurking in the forums for a little while now but this topic resonates so strongly with me that I think it's finally time for my first post!

I work at a college and my office used to be in an easily accessible building. My mom could pull the car right up to the sidewalk in front of the building and I was able to handle the very short walk to my office.

And then at the end of June my department got relocated to a different building - one with horrible accessibility. There's no way to get a car close to it, and there are tons of stairs and steep inclines on the pedestrian routes. I was completely unable to reach my new office of my own accord. My mom now parks the car and then pushes me to my office in a manual wheelchair we bought online.

The first time I showed up at work in a wheelchair was humbling to say the least. Not all of my coworkers knew the details of my health condition so I had lots of questions to answer. I think some of them still don't understand why I use a wheelchair to get from my car to my office when I'm able to walk around once I'm at the office. This past week was the first time someone other than my mom or dad pushed me in the wheelchair - my coworkers took turns pushing me to a team lunch event. I felt so completely helpless and humiliated, having to rely on a coworker to get around.

So much of "me" is centered around being independent, unassuming, never asking for special treatment, and pushing myself physically and mentally to get through times of stress/discomfort. I am no longer capable of "pushing through it". My dependence on a wheelchair has forced me to redefine a big part of who I am. I am now someone who needs help from others to get from point A to point B.

I'm dreading the day I run into someone on campus from the department I used to work in, since none of them have any clue of my health situation and seeing me in a wheelchair will be a shock, a total 180 from the energetic coworker they used to know.

The last time I saw my GP I asked her for a prescription for a scooter so I wouldn't have to rely on someone to push me in a manual wheelchair. She refused, as she was concerned I'd get too dependent on it. I reminded her once again that I have a masters degree in human anatomy and physiology so I understand the importance of using my muscles whenever possible and how to prevent total muscle atrophy. I explained that I would only depend on it when I do "extravagant outings" such as going to the grocery on my own, occasionally purchasing new clothes at a department store, or getting around the campus where I work. But apparently she would rather me not do those things at all, so I continue to not do them. My life consists of going to work, and then spending my weekends at home. Sound familiar to any of you? ;)

My manual wheelchair and my mom's dedication to getting me to and from my office allow me to keep my job, and I'm very grateful for that. A scooter would allow me to have some semblance of a life outside of work. But I'm still afraid of how I would be viewed by others if I were to go out in public in a scooter. This is all still a very new concept to me. It's nice to know I'm not alone in struggling to accept this new part of my life.

Oh my and now I've written a whole novel!! :oops: Thanks to all who read the whole thing!

Tl;dr. I just started using a manual wheelchair and it's causing me to have lots of feels.
 

Kati

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Hi @APNerd welcome to the forums!

I am a scooter user. I really appreciate my autonomy and it is actually essential to me as i live by myself. I would also hate feeling dependant on other to push my chair wherever I want to go. I have been born independant- it's a trait that never left!

In your case, imagine having to walk from the car all the way to your new office, every day, and back. At the end of the week, would,you have to give up even more than what you are now? I suspect that the answer is yes.

By using the wheelchair (and kuddos for your co-workers for helping out ) you are practicing the fragile art of pacing, and saving energy for what really is important to you, your work. Your doctor may never understand.

When I bought the scooter I also bought an electric lift in the car. i purchased a used dodge caravan so it would accomodate my scooter. Some scooter either fold or dismantle- but then you need to lift it up and put it in the car- another barriere.

It is about quality of life and it is sometimes also a necessity.

And regarding the looks, people get over it after a while. And eventually you do not feel self concious about using a device that assists you in continuing your work.

Practice makes perfect.
 

Valentijn

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I felt so completely helpless and humiliated, having to rely on a coworker to get around.
I agree with the "helpless" part, and find it annoying when I need to use a wheelchair instead of my mobility scooter. But it's letting me do something I can't do on my scooter, so I tolerate it :p You don't have to feel humiliated though. Being in a wheelchair shouldn't make anyone respect you any less, and if they do they're an asshole and no one cares what they think anyhow.

She refused, as she was concerned I'd get too dependent on it.
You need a new doctor. Refusal of disability aids for ME patients who blatantly need them is done because the doctor or therapist believes ME is a psychosomatic disorder. I'd also recommend filing a complaint if there's a way to do that. Amputees, people with congestive heart failure, etc, are not denied disability support because it might make them "too dependent", and there's no evidence-based reason to believe that ME patients are any different.

It's just a nasty little prejudice against a group of disabled people. It's also pretty senseless in your case, where you can work if your disability is supported ... does your doctor think it's better that you not work at all?
 

KitCat

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The last time I saw my GP I asked her for a prescription for a scooter so I wouldn't have to rely on someone to push me in a manual wheelchair. She refused, as she was concerned I'd get too dependent on it. I reminded her once again that I have a masters degree in human anatomy and physiology so I understand the importance of using my muscles whenever possible and how to prevent total muscle atrophy. I explained that I would only depend on it when I do "extravagant outings" such as going to the grocery on my own, occasionally purchasing new clothes at a department store, or getting around the campus where I work. But apparently she would rather me not do those things at all, so I continue to not do them. My life consists of going to work, and then spending my weekends at home. Sound familiar to any of you? ;)
Holy crap. I am so sorry to hear this. This doctor sounds awful. If I were in this situation, I would get a new doctor immediately.
 
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To all who suggested I need a new doctor... yeah I'm working on that. I've been going to this GP for at least ten years and I used to really appreciate her attitude of "let's fix anything we can with diet and exercise before resorting to medication". That works great if you have high cholesterol or blood pressure, need to lose a few pounds, or have been feeling a bit "blah" lately. But she can't seem to grasp the fact that my current condition would get exponentially worse if I were to even walk from my car to my office, let alone do "real" exercise! :eek: I see a new specialist on August 1st so I'm hoping to revisit the scooter issue with him.

Hi @APNerd welcome to the forums!
In your case, imagine having to walk from the car all the way to your new office, every day, and back. At the end of the week, would,you have to give up even more than what you are now? I suspect that the answer is yes.
Thanks for the welcome! And you're right, I'd have to "give up more" in the sense that at the end of a week I would be crashing so hard that I likely would need a good two weeks of complete bedrest to recover! Talk about one step forward, two steps back!

You don't have to feel humiliated though. Being in a wheelchair shouldn't make anyone respect you any less, and if they do they're an asshole and no one cares what they think anyhow.
I'm working on getting myself to feel the same way you do. But like @CeceNoel mentioned earlier, I can't get past the fear that people will see me as lazy. I'm overweight too, have been all my life, and I've worked hard to show people that there are a lot of reasons why someone may be overweight, but laziness is NOT that reason in like 99.9% of cases. And yet here I am now, an overweight person in a wheelchair. I can't help but wonder what people think about that. So this whole situation is really forcing me to reevaluate my self identity in a lot of ways.
 

Kati

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To all who suggested I need a new doctor... yeah I'm working on that. I've been going to this GP for at least ten years and I used to really appreciate her attitude of "let's fix anything we can with diet and exercise before resorting to medication". That works great if you have high cholesterol or blood pressure, need to lose a few pounds, or have been feeling a bit "blah" lately. But she can't seem to grasp the fact that my current condition would get exponentially worse if I were to even walk from my car to my office, let alone do "real" exercise! :eek: I see a new specialist on August 1st so I'm hoping to revisit the scooter issue with him.

Thanks for the welcome! And you're right, I'd have to "give up more" in the sense that at the end of a week I would be crashing so hard that I likely would need a good two weeks of complete bedrest to recover! Talk about one step forward, two steps back!

I'm working on getting myself to feel the same way you do. But like @CeceNoel mentioned earlier, I can't get past the fear that people will see me as lazy. I'm overweight too, have been all my life, and I've worked hard to show people that there are a lot of reasons why someone may be overweight, but laziness is NOT that reason in like 99.9% of cases. And yet here I am now, an overweight person in a wheelchair. I can't help but wonder what people think about that. So this whole situation is really forcing me to reevaluate my self identity in a lot of ways.
We are truly facing stigma on many levels out there. I am glad you understand what they are and I am glad you are here so we can all help you out when you need it.

On another topic, have you applied for a disabled placard so you don't have to walk far when you go to other places? While I do my grocery shopping by scooter (it's 2 blocks away) in certain instances I still drive and get to apts without my scooter, so the proximity to the entrance comes very handy.

The perks of a scooter: be able to go 'for a walk' in nature. Get fresh air. Visit a museum or a special outing.

Some scooters are also compatible with air travel, in case you occasionally travel for work. These fold up and come very handy at airports and at destination. Look up the different options for your needs.
 
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We are truly facing stigma on many levels out there. I am glad you understand what they are and I am glad you are here so we can all help you out when you need it.

On another topic, have you applied for a disabled placard so you don't have to walk far when you go to other places? While I do my grocery shopping by scooter (it's 2 blocks away) in certain instances I still drive and get to apts without my scooter, so the proximity to the entrance comes very handy.

The perks of a scooter: be able to go 'for a walk' in nature. Get fresh air. Visit a museum or a special outing.

Some scooters are also compatible with air travel, in case you occasionally travel for work. These fold up and come very handy at airports and at destination. Look up the different options for your needs.
I'm glad to be here too :) It's so nice talking with other people who are walking (wheeling/scooting/rolling) this same path.

A disabled placard is an excellent idea and something I very much would like to have. I think it would give me a lot more independence and help me get out of the house from time to time. Too bad my doctor doesn't agree. That's right, the same doctor that denied me a scooter prescription also refused to fill out the paperwork for a handicap parking placard. :mad:

I can't even remember the last time I went for a walk in nature or got fresh air (I used to love hiking and biking) and a museum or special outing sounds absolutely divine. Maybe someday.
 

Gingergrrl

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@APNerd, welcome to the board and I have tons of experience with wheelchairs and have used one since Oct 2014. Initially just for long distances and now I have a motorized wheelchair that I use inside of our apt. It gives me complete freedom and independence so I can do whatever I need on my own inside of the apt and then we use a manual/push chair when we go out. Luckily my husband, parents or friends push the chair and my doctors support it.

Without the chair, I can typically only stand for about 30-60 seconds without getting very short of breath and if I push it, I get chest pain. In my humble opinion, your doctor is dead wrong and she should be supporting your efforts versus sabotaging them or making you feel bad. I no longer drive (also since Oct 2014) but have the disabled placard for when my family drives me to appts, etc.

I have had some people ask me why I use the wheelchair and I say, "Because I am sick." If they push further I say that I have breathing and autonomic problems and usually that satisfies most people. But truly, it is not even their business or concern IMO. Although at work, I understand you have to be polite and maintain working relationships so more info may be required. I stopped working about nine months prior to using the wheelchair although if I had one, I could have maintained working longer (although it would have been to the detriment of my health.)
 

KitCat

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To all who suggested I need a new doctor... yeah I'm working on that. I've been going to this GP for at least ten years and I used to really appreciate her attitude of "let's fix anything we can with diet and exercise before resorting to medication". That works great if you have high cholesterol or blood pressure, need to lose a few pounds, or have been feeling a bit "blah" lately. But she can't seem to grasp the fact that my current condition would get exponentially worse if I were to even walk from my car to my office, let alone do "real" exercise! :eek: I see a new specialist on August 1st so I'm hoping to revisit the scooter issue with him.
glad to hear it. Don't be discouraged if it takes a few tries. Many people have to try several doctors before finding one that supports disability issues.

If you are trying to get covered by insurance, you may wish to research your policy before going to the doctor. For example, as far as I know, medicare will only pay for a power scooter or wheelchair if the patient intends to use it inside their house (you can use it outside as well, but must be at least partially for inside).
 

Kati

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Your doctor may simply need to understand how exactly you survive the week (by doing nothing at all on the week end, by your parents doing everything at home, and going to bed at 7 PM every night) and what happens when you go beyond your physical limits. The concept of 'crashing' or even going to bed at 7 in order to be ok for the next day of work is not normal. You are sick, and in order to continue employment you need access to mobility aid. It's where you are at right now, and she needs to understand that.

Having a local doctor who knows you and whom you can work with is important. Continuity of care is important. In reality the general practitionners who are knowledgeable with ME/ cfs are pretty scarce so one needs to help them help us.
 
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@Kati I couldn't agree more. And it's funny, all the things you mentioned - my day to day life, what makes me crash, the sacrifices I make to avoid a crash so I can keep working - I explained all of those things in detail in a letter to my doctor when I asked her to fill out accommodation paperwork for HR. So she knows all those things about me. But still, you know, it's important to keep pushing through the fatigue and exercise as much as possible *huge eye roll*

I've been telling myself that I would seek out a new GP if I don't get anywhere with the rheumatologist that I see on August 1st, but all the comments I'm reading here are making me think that I need to go ahead and pursue that NOW.
 

Kati

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@Kati I couldn't agree more. And it's funny, all the things you mentioned - my day to day life, what makes me crash, the sacrifices I make to avoid a crash so I can keep working - I explained all of those things in detail in a letter to my doctor when I asked her to fill out accommodation paperwork for HR. So she knows all those things about me. But still, you know, it's important to keep pushing through the fatigue and exercise as much as possible *huge eye roll*

I've been telling myself that I would seek out a new GP if I don't get anywhere with the rheumatologist that I see on August 1st, but all the comments I'm reading here are making me think that I need to go ahead and pursue that NOW.
Hi @APNerd what I wanted to say is that there might not be much better GP right now for many reasons:
- most gp's have not learn much about ME
- most do not get many patients with ME
- they resort to online information for best evidence and the evidence, as bad as it is, recommends CBT and graded exercise therapy.
- sometimes the guidelines recommends no particular work up as it is our case here in Canada, in fact they say less is better because patients stop being so centered on individual results :confused:
- there is no medical specialty for ME. Occasionally physicians who happen to have a med specialty will have special interest in ME. We know who they are. There are only a handful of them. Validation from these special doctors is priceless. It may be worth to be put on a waitlist to be seen by them because they could help you down the road and help you now.
- it is helpful to bring your doctor a 1 page 'state of affair' every time you visit, discussing your current situation, particularily the state of your sleep. Whether you have cognitive issues. What symptoms bother you most. Whether something made you crash, particularily if she recommended you doing something and you tried it. Do make sure it gets added to your electronic file.

At least your dr is sending you to specialists, to rule things out. It's a great start.
 
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@Kati you make some good points/suggestions there. The lack of understanding in the medical community is definitely high on the list of the most frustrating things about this disease. I myself am a scientist (human anatomist/physiologist) so it's been ingrained in my head for many years that Science Can Always Find a Solution. But in this situation even science is so far clueless and I'm utterly flabbergasted by that. And yet every time I see a new doctor I can't help but have that little glimmer of hope that maybe this time they'll understand and have some answers for me, despite all evidence suggesting otherwise. So yeah, maybe I will try to get myself on a wait list for one of those big name specialists.

Sorry, didn't mean to get so off topic. How about those wheelchairs, huh?
 

Kati

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@Kati you make some good points/suggestions there. The lack of understanding in the medical community is definitely high on the list of the most frustrating things about this disease. I myself am a scientist (human anatomist/physiologist) so it's been ingrained in my head for many years that Science Can Always Find a Solution. But in this situation even science is so far clueless and I'm utterly flabbergasted by that. And yet every time I see a new doctor I can't help but have that little glimmer of hope that maybe this time they'll understand and have some answers for me, despite all evidence suggesting otherwise. So yeah, maybe I will try to get myself on a wait list for one of those big name specialists.

Sorry, didn't mean to get so off topic. How about those wheelchairs, huh?
I understand @APNerd. I myself am (was) a chemo nurse, and the field of oncology is a field that is always generously funded and where patients always have sympathy, due to the visibility of their illness.

Like I probably said before, getting validation is a very good thing.

ETA: I will be getting another ankle surgery soon and because I will have a cast on, being on the scooter will bring my being on the scooter a visible justification.