20 replies to this topic

[KayDub]

Hello! I'm a 23 year old (birthday was yesterday!) former elite athlete who has been in a wheelchair since May (after a long hospital stay). I don't have an SCI, nor was I born with MD, MS, cerebal palsy, etc. I'm paralysed from the knees down due to a horrific infection I got from blood clots that did extensive nerve and muscle damage.

As active as I've always been (you name the sport and I've played it, including running on the USA junior national track team and running for college) I've always been involved in disability rights. My best friend in middle school had MD, and later in college I became an interpreter with my best friend being Deaf. I began a degree in Deaf ed but transfered schools because of injuries sustained from track (joint fusions and nerve damage that led to my injury that put me in the chair a few years later) and switched majors. I also am a children's ski instructor (I grew up in the mountains) and teach a lot of adaptive kids lessons, from sit skis and other physical aids to kiddos with Down's or autism, etc. But of course I never thought I'd be in a wheelchair myself.

I am recently engaged and my fiance is from Australia (we met each other skiing). I had moved down with him to work while he finished uni. About as soon as I got there the old foot/ankle injury flared up and I was in a lot of pain. I got into a specialist who did a bone scan and found inflamed tendons and stress fractures. Of course he left that day on a 3 week holiday. It got significantly worse after he left and swelled up like a balloon and after a week I couldn't put weight on it. I transferred to crutches and after a few days of crutches my left (supposedly good) leg started cramping. I thought it was a muscle cramp, but got worse, and I thought it was a pull, then got so bad I thought I tore something and couldn't put weight on it. I spent two days in bed with James taking care of me and my legs elevated and using ice and pain meds the specialist and a previous ER visit had given me. But I got worse, not better, and James took me to the ER where I was admitted to the hospital with blood clots and an infection. The hematologist in the hospital said it was the worst clotting he'd ever seen because I let it go so long (silly athlete, thinking it was a muscle pull and I could tough out the pain!) and the infection got so bad. I spent 7 days just getting stabilised with the pain and infection, on IV antibiotics and other round the clock treatment. But the after effects are I can't use my leg below the knee. But I do feel intense pain, which is preventing any sort of use of braces for the time being. I can crawl though. I've seen orthos and neurologists and hemotologists and GPs... you name it and they're still kind of stumped. I do some PT in the pool and it's exhausting but has mostly just kept me in shape and keep my spirits up a bit.

I've recently been having a lot of problems with strangers in regards to my chair. I wasn't sure if this was common or nor.

Just because I can scoot myself from my chair to a seat (though I would rather stay in my chair. I still feel pain and like to keep my feet on my foot rests) people think it's okay at restaurants to ask me to move onto a booth. That happened today and the woman put my chair across the room. I immediately panicked and my friend went and grabbed it and demanded we be reseated. When the hostess moved my chair that far I felt helpless like I wouldn't be able to move in an emergency or even if I had to use the toilet. She had no clue about the extent of my disability and I was frustrated. But I also get frustrated when people think if a place isn't accessible I can just have my fiance carry me inside and set me on a chair. Or they think I should crawl. Both are humiliating in different ways.

A similar situation happened on my way back from Australia. I didn't have my own chair at the time and was at the mercy of the airlines. Getting off planes they would demand that I walk to the chair. Once they put me on the aisle chair and knocked me off. From then on my fiance would have to carry me (I'm a fairly light female and for the time being because of finances and losing my job to illness I am living at my mother's house with stairs. He carries me and the rest I can somewhat crawl around, it's not ideal but it works for now). At London they didn't put me in a chair but an awful purple metal contraption. It was always about to fall over and had a metal bar instead of foot rests. Also I could not move it myself. We had a 12 hour layover and I was in tears the entire time. It was painful and humiliating. I am very mobile in my chair and my fiance had to wheel me next to the toilet and help me out so I couldn't tip over. There were actual chairs with wheels I could use but they refused to let me use one of those chairs, they said they were used only for the people who can walk but need to use the shuttle cars to go short distances. I then heard London Heathrow airport wants to change all their wheelchairs to this awful device that strips the disabled of their humanity. I know most people with chairs have their own but no one who cannot walk should have to feel like I did. I was not only in excruciating pain from being pulled around on this contraption, but felt dehumanised like they thought because I am disabled I'm some object who doesn't need to move on their own.

I deal with people pushing me into different rooms (a man working at a venue at a party actually pushed me away from my partner while he was talking to someone else and attempted to put me on an elevator until I told him to stop) and adults staring at me and asking why I'm in a chair. I ignore them now. Is that common for adults to ask you what your injury is? The first time I told one woman and she was like "Oh so you're not 'really' paralysed." I didn't know what to say so I generally avoid (as politely as possible) the whole ordeal.

Anyway I just wanted to share my story and maybe meet and talk to some other wheelchair users. I know I am lucky in some regards. Right I feel stuck between two worlds. I'm not fully parapalegic/quadrapalegic but I can't walk. I feel like I'm in limbo. I do hope it's okay that I post here. Thanks for reading!

[goose]

Happy late birthday and welcome to this forum!!

As much as we'd like to think our society has advanced, people can still be cruel-- Sometimes from ignorance from lack of knowledge and sometimes from pure stupidity.You'll have to learn to speak up to get your needs met.

This is still brand new to you and you will get more comfortable with things as time passes. I know it all must be really hard for you right now. Do the doctors think this is a temp. condition? Have you gotten several opinions yet?

You can still be very active in sports. There is a whole section on here about different activites you can try.

Glad to have you!

[Smileyblue]

Welcome to the forum.. ;-)

[KayDub]

goose, on 14 July 2011 - 05:22 AM, said:

Happy late birthday and welcome to this forum!!

As much as we'd like to think our society has advanced, people can still be cruel-- Sometimes from ignorance from lack of knowledge and sometimes from pure stupidity.You'll have to learn to speak up to get your needs met.

This is still brand new to you and you will get more comfortable with things as time passes. I know it all must be really hard for you right now. Do the doctors think this is a temp. condition? Have you gotten several opinions yet?

You can still be very active in sports. There is a whole section on here about different activites you can try.

Glad to have you!

Thank you for such a warm welcome! I was worried people would tell me to find another group because I don't have an SCI per se (I've been insecure a lot more since I got sick, my apologies!) Unfortunately I spent my birthday getting emergency compression ultrasounds done because the numbness is spreading.

People always manage to surprise me! I'm fine with kids saying things, but full grown adults you'd think would know how to behave a little better. Oh well, it's all about awareness!

It is. When I got out of the hospital I went through the melt down phase where I felt like I was experiencing a huge panic attack. I wanted to jump out of bed and run but I couldn't and it scared me. Right now everything has gotten worse than the doctors have said. I saw two in Australia and one in Colorado. I scheduled an appointment with a new one after she told me to take Tylenol (which I'm allergic to) as my numbness has spread. I still have sensation in the form of extreme pain but absolutely no movement. I knew right away to find someone else. My ortho before her said it was a hemotology problem now she says it's an ortho problem and I'm also seeing a neurologist. From the way things are going it's not short term, but permanent hasn't come yet either.

I'm trying to stay as active as I can. I go swimming when I can I had to move back to my mom's inaccessible house (I have to crawl upstairs to my old room and be carried out to the car because of stairs). She's a loving wonderful woman but not incredibly educated so she just thinks that if I try harder I can walk. But then I think she saw something on Dr. Oz today about the nerve damage in the actual legs causing paralysis and is starting to get it. But she's more convinced than me that any day now I'll be able to jump up and go back to running lol! But my fiance who has moved with me has been wonderful. He helps with my doctors and when I was in hospital and

I'll definitely check out the sports section. I've always been really active. My main job is teaching ski school and I focus on adaptive kiddos. At our sister mountain there's a woman in a wheelchair (I don't know her injury) who is an adaptive instructor so I feel confident that I can keep my job. I do coach another non-adaptive group though, 6 eight year old girls, that are part of a local program we ski with every weekend. I love them to death and hope I can continue to ski with them. I think their parents would be receptive to me teaching in a sit ski... I hope. We all got along so well last year!

Anyway sorry I'm rambling it's just so nice to find an active community of people I can talk to since I'm so new to this all!

[catmint]

Hi Kay

Welcome to the forum

[wheeliebear75]

Hello & welcome! Yes people often think of conditions as black or white which is like saying all people who are hearing or visually impaired are all 100% deaf or blind....it just doesn't work that way. You'll also find an area just for those who are partially paralyzed "incomplete". Although the majority of us have a SPINAL CORD INJURY there are a few that have general nerve damage (just be upfront & honest in your posts & in your abilities). If you're still having the numbness get worse I'd have a Dr. order another MRI ASAP to make sure you don't have any other blood clots causing further problems.....thus far it sounds that you've got your bladder & bowels unaffected.....& I'm fairly sure you'd like to keep it that way. It's wonderful that he has been so supportive instead of bailing when the road got a bit bumpy. Welcome to The GANG!

[esslouis]

hi and welcome!! I do have a sci but i am a wobbly walker. I have been made to feel really welcome on this site and have found it really useful. I no where you are coming from when people move your wheelchair - people tend to move my four wheeled walker and then leave me stranded!! I usually ask them how am i going to move about if they have taken my only means of transport?? You will get used to people asking inappropriate questions my fav question at the mo is "can you have sex and if yes how does it feel?" i usually ask if they are into bondage or s&m and if not say i'm not interested in them!! so again welcome and please don't feel you don't belong coz you do esslouis

[McTavish]

Welcome Kay, you will love this site as there is always someone who can come up with an answer to your problem. I totally understand how you felt when your chair was at the other side of the room, when we stopped in Charles De Gaulle Airport last year they sat me on a seat and took away their chair (mine was in the plane)I felt totally helpless and I was starting to panic as the bathroom is always my last port of call before boarding.
It is also fairly common for complete strangers to come out and ask outright why you are in a wheelchair, I am used to this now and give them a pleasant short answer and they go off quite happy, I think most people are genuinely nice and don,t mean any harm they are just a bit nosey.
It is great that you can continue in your job and that your fiance is such a good help. Take care.

[mellowgator]

kaydub,

are you referring to amanda boxtel as the disabled ski instructor at challenge aspen? if so she is paralyzed from a ski accident and is a para. she and houston started the program in snowmass and it's one of the best. do you teach in crested butte? i've also skiied thier program.

good luck with your endeavors. it sound like you have what it takes to be successful in spite of your injury. welcome to the forum.


mellowgator

[KayDub]

wheeliebear75, on 14 July 2011 - 08:52 AM, said:

Hello & welcome! Yes people often think of conditions as black or white which is like saying all people who are hearing or visually impaired are all 100% deaf or blind....it just doesn't work that way. You'll also find an area just for those who are partially paralyzed "incomplete". Although the majority of us have a SPINAL CORD INJURY there are a few that have general nerve damage (just be upfront & honest in your posts & in your abilities). If you're still having the numbness get worse I'd have a Dr. order another MRI ASAP to make sure you don't have any other blood clots causing further problems.....thus far it sounds that you've got your bladder & bowels unaffected.....& I'm fairly sure you'd like to keep it that way. It's wonderful that he has been so supportive instead of bailing when the road got a bit bumpy. Welcome to The GANG!

Thank you!! Of course I'll be absolutely honest, don't worry! It's frustrating about the numbness spreading because my original hematologist (after taking 9 hours to get ahold of her despite calling emergency triage!!!) ordered a ultrasound. They ultrasounded the wrong parts of my leg (my groin) despite my pleas that my clots are in my LOWER legs and the numbness is spreading DOWN. The tech said it's impossible to ultrasound the ankle area, despite the doctors in Australia when I was hospitalised being able to. Then the radiologist who evaluated the scans wouldn't even talk to me. The tech said he had to get ahold of my doctor and they couldn't (surprise there....) I asked if he'd speak to me instead and he wouldn't. Obviously my life wasn't in danger because I was sent home, but I'm still very worried. Then the next day this hematologist called (only after my dad called the office and stated he was my father and an attorney lol) and wouldn't answer my questions just said it's not serious, it's not serious (meaning the clots aren't spreading to my lungs... which is good but if my medication isn't making the clots go away and they're causing more nerve damage... that's not good either) As of now I've lost all motion from my knees down to my feet but I can still wiggle my toes. No dorsaflexing or ankle rotation or anything though. Also I'm afraid with the numbness I might actually lose my toes because the nerve damage that was caused in my legs didn't cause numbness just extreme pain then (either long term, no one has said permanent yet but we'll see) damage in my nerves and stopping my motion. So as soon as I got off the phone I looked up the number for a NEW DOCTOR. I can't get in for four more days so we'll see. I'm also searching for a neurologist because the hematologist said it could be a nerve problem. Sorry for the rant it's just so frustrating! It's so important to have to advocate for yourself (especially since moving in with my mother who has a tendancy to believe any doctor that talks to her... or the internet) Best of intentions of course but still an impediment.

mellowgator, on 14 July 2011 - 03:20 PM, said:

kaydub,

are you referring to amanda boxtel as the disabled ski instructor at challenge aspen? if so she is paralyzed from a ski accident and is a para. she and houston started the program in snowmass and it's one of the best. do you teach in crested butte? i've also skiied thier program.

good luck with your endeavors. it sound like you have what it takes to be successful in spite of your injury. welcome to the forum.


mellowgator

Not her (but I'd love to meet her!) I actually teach at Beaver Creek (I grew up in Avon). Over at Vail there's a woman who uses a chair that teaches in their adaptive program. I've worked with their adaptive director at Vail but haven't actually met her. I know what I'm doing this season! Do you live in Colorado? Most out of staters seem to ski at Winter Park but it's great you went to Crested Butte (I'm very partial to BC but LOVE CB) Last time I was in Winter Park I stayed overnight at a hotel with my fiance as he was competing in the NorAm freestyle mogul races. He's on the Australian National Team and absolutely crazy doing some of the flips he does (though he was working on my freestyle with me last year. New goal, start freestyle sit skiing!) At the hotel there was a huge group of wheelchair users who were all from Britain and Ireland :-)

[KayDub]

McTavish, on 14 July 2011 - 01:41 PM, said:

Welcome Kay, you will love this site as there is always someone who can come up with an answer to your problem. I totally understand how you felt when your chair was at the other side of the room, when we stopped in Charles De Gaulle Airport last year they sat me on a seat and took away their chair (mine was in the plane)I felt totally helpless and I was starting to panic as the bathroom is always my last port of call before boarding.
It is also fairly common for complete strangers to come out and ask outright why you are in a wheelchair, I am used to this now and give them a pleasant short answer and they go off quite happy, I think most people are genuinely nice and don,t mean any harm they are just a bit nosey.
It is great that you can continue in your job and that your fiance is such a good help. Take care.

Thanks! It must be something about European airports. I still can't get over what happened at Heathrow. It's like people think people who use chairs are rocks and we can just be set places. Even my good friends who have weekly BBQs but a completely accessible condo think it's no big deal for my fiance to just carry me in and set me on a chair for the entire time. It's uncomfortable and slightly humiliating (along with inconvenient) We're people who like to move at our will, chose our own food and use the toilet on our terms without having to ask for help if at all possible.

You're right about the good intentions. I always just thought adults wouldn't ask it'd be mostly kids. I did have a two year old at the grocery store who was so enamored by my chair he kept running away from his mum and following me. Almost walked out of the store with us!

And I am incredibly lucky to have such a great fiance who has stuck with me through my illness and hospitalisation and current struggles :-)

esslouis, on 14 July 2011 - 10:01 AM, said:

hi and welcome!! I do have a sci but i am a wobbly walker. I have been made to feel really welcome on this site and have found it really useful. I no where you are coming from when people move your wheelchair - people tend to move my four wheeled walker and then leave me stranded!! I usually ask them how am i going to move about if they have taken my only means of transport?? You will get used to people asking inappropriate questions my fav question at the mo is "can you have sex and if yes how does it feel?" i usually ask if they are into bondage or s&m and if not say i'm not interested in them!! so again welcome and please don't feel you don't belong coz you do esslouis

Thank you so much for making me feel included! Every thing I've read on the internet has been directed at people with an SCI. Some of it has been applicable (mainly accessibility) but the support here is great!

[davjed]

Hi Kay,
I was a vascular ultrasound tech for years and my brother is a vascular surgeon. We routinely scanned arteries and veins down to the ankle. We went from ankle to groin and higher if necessary. He would do arterial bypasses below the knee routinely and we would follow them with scans regularly. If you're in a big city especially in Colorado, there should be some competent vascular surgeons there that may have a different view of what is going on with you. Blood clots from the deep veins below the knee can cause a DVT in the lungs. The superficial veins are not as big a problem. It sounds like yours is in the deep system to be causing this much trouble. I suggest seeing a vascular specialist. Best wishes........

[mellowgator]

KayDub, on 14 July 2011 - 04:22 PM, said:

wheeliebear75, on 14 July 2011 - 08:52 AM, said:

Hello & welcome! Yes people often think of conditions as black or white which is like saying all people who are hearing or visually impaired are all 100% deaf or blind....it just doesn't work that way. You'll also find an area just for those who are partially paralyzed "incomplete". Although the majority of us have a SPINAL CORD INJURY there are a few that have general nerve damage (just be upfront & honest in your posts & in your abilities). If you're still having the numbness get worse I'd have a Dr. order another MRI ASAP to make sure you don't have any other blood clots causing further problems.....thus far it sounds that you've got your bladder & bowels unaffected.....& I'm fairly sure you'd like to keep it that way. It's wonderful that he has been so supportive instead of bailing when the road got a bit bumpy. Welcome to The GANG!

Thank you!! Of course I'll be absolutely honest, don't worry! It's frustrating about the numbness spreading because my original hematologist (after taking 9 hours to get ahold of her despite calling emergency triage!!!) ordered a ultrasound. They ultrasounded the wrong parts of my leg (my groin) despite my pleas that my clots are in my LOWER legs and the numbness is spreading DOWN. The tech said it's impossible to ultrasound the ankle area, despite the doctors in Australia when I was hospitalised being able to. Then the radiologist who evaluated the scans wouldn't even talk to me. The tech said he had to get ahold of my doctor and they couldn't (surprise there....) I asked if he'd speak to me instead and he wouldn't. Obviously my life wasn't in danger because I was sent home, but I'm still very worried. Then the next day this hematologist called (only after my dad called the office and stated he was my father and an attorney lol) and wouldn't answer my questions just said it's not serious, it's not serious (meaning the clots aren't spreading to my lungs... which is good but if my medication isn't making the clots go away and they're causing more nerve damage... that's not good either) As of now I've lost all motion from my knees down to my feet but I can still wiggle my toes. No dorsaflexing or ankle rotation or anything though. Also I'm afraid with the numbness I might actually lose my toes because the nerve damage that was caused in my legs didn't cause numbness just extreme pain then (either long term, no one has said permanent yet but we'll see) damage in my nerves and stopping my motion. So as soon as I got off the phone I looked up the number for a NEW DOCTOR. I can't get in for four more days so we'll see. I'm also searching for a neurologist because the hematologist said it could be a nerve problem. Sorry for the rant it's just so frustrating! It's so important to have to advocate for yourself (especially since moving in with my mother who has a tendancy to believe any doctor that talks to her... or the internet) Best of intentions of course but still an impediment.

mellowgator, on 14 July 2011 - 03:20 PM, said:

kaydub,

are you referring to amanda boxtel as the disabled ski instructor at challenge aspen? if so she is paralyzed from a ski accident and is a para. she and houston started the program in snowmass and it's one of the best. do you teach in crested butte? i've also skiied thier program.

good luck with your endeavors. it sound like you have what it takes to be successful in spite of your injury. welcome to the forum.


mellowgator

Not her (but I'd love to meet her!) I actually teach at Beaver Creek (I grew up in Avon). Over at Vail there's a woman who uses a chair that teaches in their adaptive program. I've worked with their adaptive director at Vail but haven't actually met her. I know what I'm doing this season! Do you live in Colorado? Most out of staters seem to ski at Winter Park but it's great you went to Crested Butte (I'm very partial to BC but LOVE CB) Last time I was in Winter Park I stayed overnight at a hotel with my fiance as he was competing in the NorAm freestyle mogul races. He's on the Australian National Team and absolutely crazy doing some of the flips he does (though he was working on my freestyle with me last year. New goal, start freestyle sit skiing!) At the hotel there was a huge group of wheelchair users who were all from Britain and Ireland :-)

kaydub,

i live at the beach in florida and just go to colorado every year for vacation. our families done this since my kids were in the baby ski school and now my daughers ski great as teenagers. my oldest daughter is in cb this week for an elite running camp. so we love your area.

i've skiied all over colorado. my families favorie resort is snowmass we go every year. i still don't like the instuctors to let go of me. i tell them i just want to have fun and i have a need for speed. i've had insturctors take me up the half pike and down a race course. it was such a rush. i ski ok but i hate to fall so i stay tettered.

i've been to winterpark, breckenridge,cb and snowmass and i've also skied nm and utah.

i'm attending a free camp for women in august there are 4 spots left have a look i believe it's in your neck of the woods and it would be great for networking and just overall fun. here's the link.

http://caf.kintera.org/campdiscovery

nice to meet you.

karen

[wheeliebear75]

The airports here in the U.S. do the same thing with people in wheelchairs. In 1996 I took my 3 girls to visit family in Utah (I'm from the San Diego area) when they were 4,3,&2; it wasn't nonstop but we didn't have to transfer planes, the flight attendants were very nice & one of the female attendants took my 3 & 4yr olds to potty & help them washed their hands, I had to stow MY chair under/in the plane too, quite unnerving being separated from it (in my head I kept pondering "Which would be faster if we have an emergency.....doing an ARMY CRAWL or doing a BARREL ROLL?" I decided on the ARMY CRAWL due to space. ).

The other "FUN one" is when people decide that you are their personal coat rack.....I've had so many strangers hang their bag or coat on my push-handles in the elevators & on public transportation I've lost count. DO I LOOK LIKE A FREAKIN COAT RACK?!?!?

Yes it is much nicer when you can decide what side of the room or in which room you'd like to be. I have a couple friends who's places are not all that accessible (they've got a few stairs to their front door OR the door is so narrow my chair can't fit through it without being collapsed/broken down) in those cases I get carried up/in & sat in a chair or couch til MY chair is brought in. Hardly anyone has a bathroom that is already do-able which unfortunately means someone has to either carry me in & sit me down on the potty & I pull my bottoms off THERE, OR I have to crawl in & do a floor to chair transfer.....neither feels very dignified.....BUT....better to suffer the indignity of having to get carried in or crawl than to have any accidents.

Just so's ya know there are actually several people who are here because of blood clots and/or viruses/bacteria causing nerve damage. Damaged is damaged whether it was by getting kicked/bucked off by a horse, on the loosing end of the fight with gravity (we're starting a class action law suit against sir Isac Newton ), MVA, OR the body itself failing or attacking itself.....we've all been GIMPED!

Edited by wheeliebear75, 14 July 2011 - 11:32 PM.

[KayDub]

wheeliebear75, on 14 July 2011 - 11:30 PM, said:

The airports here in the U.S. do the same thing with people in wheelchairs. In 1996 I took my 3 girls to visit family in Utah (I'm from the San Diego area) when they were 4,3,&2; it wasn't nonstop but we didn't have to transfer planes, the flight attendants were very nice & one of the female attendants took my 3 & 4yr olds to potty & help them washed their hands, I had to stow MY chair under/in the plane too, quite unnerving being separated from it (in my head I kept pondering "Which would be faster if we have an emergency.....doing an ARMY CRAWL or doing a BARREL ROLL?" I decided on the ARMY CRAWL due to space. ).

The other "FUN one" is when people decide that you are their personal coat rack.....I've had so many strangers hang their bag or coat on my push-handles in the elevators & on public transportation I've lost count. DO I LOOK LIKE A FREAKIN COAT RACK?!?!?

Yes it is much nicer when you can decide what side of the room or in which room you'd like to be. I have a couple friends who's places are not all that accessible (they've got a few stairs to their front door OR the door is so narrow my chair can't fit through it without being collapsed/broken down) in those cases I get carried up/in & sat in a chair or couch til MY chair is brought in. Hardly anyone has a bathroom that is already do-able which unfortunately means someone has to either carry me in & sit me down on the potty & I pull my bottoms off THERE, OR I have to crawl in & do a floor to chair transfer.....neither feels very dignified.....BUT....better to suffer the indignity of having to get carried in or crawl than to have any accidents.

Just so's ya know there are actually several people who are here because of blood clots and/or viruses/bacteria causing nerve damage. Damaged is damaged whether it was by getting kicked/bucked off by a horse, on the loosing end of the fight with gravity (we're starting a class action law suit against sir Isac Newton ), MVA, OR the body itself failing or attacking itself.....we've all been GIMPED!

Thank you so much for this post, it made me smile and laugh! "Do I look like a coatrack?" LOL. My friends try to use me as a ride until they realize if I get dumped out of my chair I can't brace myself or get up without a huge struggle. Like I need to get hurt more. One guy told me "Well when __ was in a chair we did it." ___ had a broken ankle and was too lazy to use crutches all the time. It's a little different!!!

The last few days have been hard. I've been trying to socialise more which is just making me more aware of the, oh my god I can't walk. My mum was trying to make conversation yesterday while waiting for my fiance (and main caretaker) to come back at the airport and she started asking me about all the girls I ran track with on the national team back in high school/early college. I know she was trying to be nice but it's like... I'm going to be lucky if I ever walk again let alone run and jump at the national level! I came home and saw my medal board (after crawling up the stairs army style... now that the fiance is back and can drive I think I'll be moving in for the time being to my dad's who lives in a condo complex with access to buses, there's an elevator, and everything is on one floor so I can wheel myself to the bathroom and my bed. The only problem is I'm going to school in the city close to where my mom lives and have a plan set up to take light rail. Depending on if I can get myself walking a bit with crutches/braces and be in my chair the rest of the time or not (4 doctors appointments next week) I may take over her office as a bedroom. The downstairs bathroom isn't accessable at all in my chair. Le sigh, I have a huge scholarship to this law school so I'll make it work!)

Anyway it was great the flight attendants were helpful. My fiance had to carry me to the bathroom and at parties tends to carry me if need be. I'm sure I'll get over some of the humiliation it's just pretty new to me.

Thanks again for all the support :-)

[Ginny]

Don't give up, Kay. I know it must seem like a lifetime, but this just started a relatively short while ago for you. I agree that you should continue to press for a reason for your condition. There may well be something that can be done...or your body may be able to heal itself with time.

I was injured when a tornado dropped a tree on our camping tent last summer. I've always been very fit and being taken off the tracks like that was awful. I've recovered quite a bit since then although numbness below the knees plagues me, too. Because of the numbness my balance has been affected. Have you noticed that, also? Since my accident, I've learned to walk again. Currently, I use canes, mostly for balance, but I can walk free, something I call the 'drunken bumper penguin'. I was walking before I regained much sensation below the knees. It was a process..first a walker, then crutches, then canes, etc.

Now, I'm able to use a treadmill and that has been wonderful. As long as I can hold onto the rails, it works. I'm not breaking any land speed records, though!

I hope that you can get answers for your condition and proper help to fight it. I know you have the will. Do whatever you can to stay fit. Being in a wheelchair can quickly weaken your core muscles and tighten your hips and knees. Keep stretching and move what ever is possible, as often as possible. Try new things. Maybe a recumbent exercise bike or some yoga poses. At first things seem impossible but after a while, you start to experiment with what can be done.

Keep us posted on how you do.

[Tetracyclone]

Kaydub,

Another welcome here. Yes, it is a huge transition for you to be paralyzed. However we came to be paralyzed, the life is the same. Sometimes we need to talk about the whys, sometimes it is the "how" of living in a chair that concerns us.

Somewhere in the travel section I read a bit of advice about arranging things ahead of time with the airline so we use our own chairs. Delta has been good about this for me, in Asia and in the USA. They take my chair once I am on the plane, stow it under, then bring it to me ASAP with "gate-checked baggage" once we land. They also provide an attendant to carry stuff because there is always more carry-on than hubby can deal with.

I arrange this stuff by phone when I buy the ticket, then go over it again just before the flight. I am glad you are on top of them medical issues. If you have increasing numbness something is seriously wrong.

Your guy sounds like a keeper. Good luck.

[isobar]

Welcome aboard

[norma]

Welcome....you came to the right place!!

[rollingtrouble]

Welcome welcome welcome! I think you will find some fine advice and information on this forum that you will find nowhere else. Hang around with us, its kinda fun!

[ajl338]

Hi
I am not technically a SCI person. I ended up with nerve damage after a LP.
Dont worry about people and their attitude to your chair, people dont do it on purpose, you just learn to be more direct with your instructions about what you let people do with it and especally you in it.

From my experience N.Americans are far more relaxed about chairs that Europeans. I have flown into Canadian airports a few times and never any issues. I am asked what they can do to assist me, as opposed to just being picked up and moved or wheeled somewhere i dont want to go. Austria was the worst. I went on my first ski trip this year and they wouldnt bring my chair to the plane door (they do everywhere else in the world) and when i refused to move until it came they tried to pick me up by my arms and drag me.
Certain airlines are better than others. I fly monthly to uni on an internal UK flight and have found BA to be accommodating. They now even book me a specific seat on the plane at the front so i can wheel my chair on, transfer into the seat and they put my chair in the hold. Therefore not needing the isle chair, saving everyone time and effort and speeding up bording.

You need to go and explore some of the european ski resorts for access. I went to Teigns and the railway had a specific disabled access channel, it wa up 7 steps to get in the terminal and then 42 steps inside to the train. Once off the train at the top there was a disabled toilet!