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Wheelchair Woes


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hi all-

i'm needing to vent a bit here. i have been at my wits end and while i know it will pass and (somehow) get worked out i know you all will understand. here's the scoop:

as many of you know, it was quite a leap for me to acknowledge that using a wheelchair is something i need to be doing at times and that doing so would allow me to re-enter parts of the world that i've been MIA from for quite awhile. the doc with whom i brought the issue up agreed & wrote the letter that my insurance company asked for specifying a folding, ultra-light model.

between misdirection from my insurance company re: the ordering procedure, scheduling a fitting & the like, this whole ordeal has now already dragged on for two months and the only chair in sight is one i borrow at a store.

the guy who fitted me for my chair was great & explained to me that paperwork would be sent to my doc to be signed, insurance would be processed & then that paperwork would then be sent to me to sign off on my co-pay and the chair would be ordered. when i received my paperwork at the end of june i was thrilled b/c based on what had been explained to me i thought it meant the doc & insurance paperwork had already gone through. i had called to confirm their receipt of my paperwork & thought that meant i was good to go. i should have known better.

i was told the chair would take about 2 weeks once the order was placed so i called monday...only to be told that the doc had never sent in the paperwork. and the chair hadn't been ordered. and i'm moving next weekend several states away.

so all week, from my post-cleveland crash in bed i've been trying to sort through the mess. everything from being told by the wheelchair folks i'd have to pay a rush fee (i don't think so) to figuring out what the heck happened to the doc's paperwork.

and today i end up being told that my doc isn't comfortable with the paperwork. that he doesn't know enough about wheelchairs and that the recommended chair is too elaborate. and that my PCP should deal with any authorization. i was/am furious. it's by no means cheap but it's a basic ultralightweight chair. and remember that he himself wrote the original letter specifying an ultralightweight. b/c i won't be able to lift a heavier one in/out of my car on my own. and b/c the lighter the chair the less energy it takes to move. if he wasn't comfortable being involved why did he write the initial letter. and why didn't he bother to let me know in the past 3 weeks that the paperwork has been sitting on his desk????!!!! my PCP probably would have been more than willing but she's now out of the office b/c her husband is really sick so she can't help at all between now & my move. and without the paperwork i'm going to have to come up with the entire cost myself b/c insurance won't pay a penny. and i definitely don't have that kind of money. i had them fax me the paperwork too to ensure it isn't anything wacky & it's not. i have no clue why the doc is being so weird. and i really liked him too. still do aside from this but this is ridiculous.

so i've been in hysterics b/c i don't have the money for the chair and am obviously in a major time-crunch b/c of the move. the doc's assistants have been great and are trying to help the best they can, as is the lady at the wheelchair distributor, but it's still a huge mess.

i am baffled by the craziness of all of this & while i know the world isn't going to end or anything this stuff just gets so overwhelming. b/c in the midst of it there have been other insurance messes, trying to get my records from my primary that i dont have (just the past few months) for less than a hundred dollars, mail-order perscription messes, & friends that were supposed to help load the u-haul bailing on me. i know it all will pass but it's pretty darn overwhelming at the moment.

on a good note, i have confirmed (yet again) that my symptoms don't flare with emotional stressors b/c for the first day since my cleveland trip last week i feel like i'm entering the land of the living. still climbing out but at least heading in the right direction.

so...this got really long but i had to vent to people who would get it. it's just so incredibly hard that the wheelchair thing, once i finally "got over myself", has been such a battle and continues to be. could they make this wheelchair-acceptance thing any harder for me? (i'm sure they could, but let's not even go there...)

and then aside from my selfish venting it angers me so much b/c i know i'm not the only one. that people much worse off than i am deal with the same & are often less able to do so. (thus part of the reason i need my chair so i can go off and save the world with my soon-to-be-embarked-on medical social work degree?? :D )

okay...i really will stop now.

thanks for listening to the vent.

taking many deep breaths & hoping the boxes will sprout wings,


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Ooof. That's quite a mess. Are you able to talk face to face with the doctor? I know you're down to crunch time here, but sometimes people have an easier time saying no over the phone or via a secretary...and if he wrote the original rx, then what's the problem now? I kind of wonder if someone from the insurance company gave the doc an earful?

Here's to uneventful and safe travels as you get settled in Ohio.


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Here's to uneventful and safe travels as you get settled in Ohio.

amen to that one. fingers are crossed. prayers being said. and then some.

re: the doc, he's not local so face-to-face isn't an option. not local to the parents either. probably lucky for him b/c my mom & i were both pretty riled up today.

and he must be reliving a past bad-experience with an insurance company b/c i know for certain that he hasn't had any contact with mine at all.

thanks for lending those mightymouse ears,


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I am so sorry. I was actually about to write you and ask you if you had recieved the wheelchair yet. I am currently going through the same thing, except with an electric wheelchair. My rheumatologist doc sent me to this "expert" PT who said I was destroying my shoulder by trying to push myself around my college campus (its very hilly and I have EDS so I would dislocate my shoulder at least once a day). She said I needed an electric one so I could carry on with my life and the doc agreed but then when the insurance send him the papers all of a sudden he decided no. His reasoning was that he had bad experience with people getting lazy and that if I "thought" I was unable to push myself my mom could just do it. LIke my mom can just quit work to push her 19 year old daughter around school. :angry: I had to take spring quarter off becuase I had no way of getting arouond. My new cardiologist has talked to Dr. Grubb about it and Dr. Grubb told him if that is what I need to live my life than that is what I should get. SO now I am starting the whole process over again with the cardiologist. Sorry for the rambling, I just thought I should let you know that I know where your coming from and how frustrating it can be. I do not know how I would be able to remain sane if I was moving out of state in the middle of it. I hope it all gets easier for you!

Just as a thought, dont you think it would be great if each doctor was required to try and get around in the regular 40-50 pound wheelchairs for an entire day with no help, lets see... up hills, and having been given something to make them fell as we do. Just a dream but I think a lot more docs would understand then!

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steph & alicia -

thanks for sharing my frustrations. although i'm sorry you have your own share of stories to relate! i continue to be blown away by the craziness of things. and, yep, i think that "a day in the life" would at least perhaps give some docs a clue.

in terms of waiting until i'm in cleveland it's not an option b/c the chair was already ordered. in fact.....drum roll....i actually got it today! pretty wacky with the craziness of things, b/c absolutely nothing has been straightened out, the doc is out until tuesday, and come to find out today that the dealer messed up and "forgot" to do the other pre-authorization paperwork for my insurance company. geesh. but...i think they felt bad so they called me to see if they could deliver it, i didn't pay anything (other than the 10% copay i already paid weeks ago), and at least i have the chair which means other nuttiness can - if not resolved prior to - be resolved long-distance.

i know dr. grubb would be furious if he knew what was going on. if i REALLY get in a bind i could get him on board but i'd rather not have to knowing how bogged down he is. he knows me better than any (his wife was my ped many years ago) up to this year but hasn't been in the loop this year b/c when i got really sick he was out himself.

my mom's going to talk to my old GP who is a family friend & who i may be reconnecting with some when i'm back in ohio. she's quite up on the autonomic stuff in general (actually tentatively diagnosed me years ago) and is pretty up on what's been going on with me this past year too so we're pretty sure she'll do it. it just royally ticks me off to be in a position to have to ask her; i don't want to take advantage.

but...i do have the chair. now it's just a matter of getting the right paperwork filled in by the right people (or anyone for that matter??) sooner rather than later. still can't believe though that the doc is contradicting the letter he wrote himself...

steph, i do like the idea though of finding a cute guy - at case or elsewhere. if not for this i'm sure it'd come in handy for many other things :angry: and thanks for the congrats...it's great to have such a good feeling about where i'll be spending time from the get go. and just think...i'll have a whole handful of medical folk at my disposal to bombard with autonomic info. hehehe.

glad to hear your fiascos got straightened out in the end, but what a headache in the meantime. i've had a good number get straightened out too over the years as i know this one will, but like i said.....ggggggggggrrrrrrrrrrrrrrrrr.

alicia, i hope things get rolling (pun intended :rolleyes: ) for you soon with your chair too. i definitely would need electric if i were dealing with a large hilly campus but am lucky in that my program is 99.9% in one building. and about my remaining sane....that's debatible at the moment!

thanks again gals,


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