Sunday, August 30, 2009

My New Wheelchair!

(Photo: Me & my wheelchair)


As you know, I was really bummed that I lost my insurance and with it went my wheelchair. For quite some time, I searched for one that would be a good replacement - and I was going to settle and just get a 'hospital' style wheelchair - you know - the big, ugly, heavy, navy blue plastic ones. The problem with these sorts of chairs, they don't fit in my car (not even the trunk) and I can't pick them up to load/move them. The last time I picked up my old wheelchair, I dislocated my shoulder. So, I was unhappy and chairless.

I remembered watching the Discovery Health Channel EDS clip with the Martial Arts instructor, Alberto Friedmann - and in it, he had a wheelchair that was really lightweight (or looked it), with removable wheels. I thought to myself, 'that would be perfect!' - but I had no idea what kind of chair it was. So, I called Alberto. He was really nice, and though it was a strange call, he obliged me and gave me all the info on his two wheelchairs. He had a Quickie GTX and a Tilite wheelchair. He said the Quikies were really nice, quality chairs - and a little bit cheaper than the Tilites. His GTX folded up really small, would fit in an overhead bin of an airplane. But - he said - if I would have a problem lifting the chair, the Tilites were even lighter than the Quikies. So, it was settled. I would look into both. I mean, how much was the price difference? Well, it hit me hard. Not the price difference, but the price - period. Most of the chairs were anywhere from $1,000-$4,000 dollars, some even more. Yikes! No job, no income, disabled - no money coming in. I wasn't going to be able to afford a nice wheelchair. Heck - I couldn't afford a new 'ugly' hospital chair (they were between $500-$1,000!). What would I do?

I turned to Craigslist. And I waited. And waited. And then logged in to see 'Quikie GP Swingaway Youth/Young Adult Wheelchair.' The photos were too good to be true! The wheelchair was very similar to the ones I was looking at on the web - and had lots of added features - they had purchased a lot of accessories and parts that made the wheelchair even more functional. And - the price - $50. Five-zero. What?! I started emailing with the owner and chatting about all the things they added to the chair. When they purchased it new, the chair and all parts came to a total of $3,400!!! But, what did 'youth' mean and would I fit into it?

I talked at length with the woman who was selling the chair. The wheelchair belonged to her daughter, and she was needing a different kind of chair - something even fancier. The girl was in her early twenties and had this chair for all of her late teen years. She has spina bifida and spends her waking hours in a wheelchair. She has no function in her legs. None. The family was just looking for someone to take the chair who would really get good use out of it - and they were only asking $50 to just help pay for some more medicine for the girl. She was recovering from a stage 4 pressure ulcer. (I had to google that, and was really saddened and horrified - it looks SO painful!) I went and checked the chair out - it was perfect. It fit like a glove, just needed a few minor repairs, and was right in the budget! I would just need to buy a cushion (and nothing too fancy). I was so touched by these people and so overjoyed. I got a chair, to meet a really nice couple, and I got a nice reminder that I don't have it so bad - I still have legs that work. Though they cause me pain, I can still get around. Though I can't easily walk, whether from the joints or the POTS, I can still walk. I will make it. Today is only today, and tomorrow is a new day.

I am more mobile with my new wheelchair. I can do things like shop for the day with my mom, get groceries when my POTS is out of control, and get through the airports with ease. The chair fits in my trunk, and when it is taken apart, it is light enough for me to pick up - it can still be awkward, but so far I haven't dislocated anything loading it into the car! Hooray! For those of you who have the money and need a wheelchair, I really recommend looking into the Quickie and Tilite brands. For those of you who have good insurance, you could try those as well. For those of you like me, just keep on looking and don't give up. You never know what will pop up on Craigslist, what stories you will hear, and what you will be reminded of. :)

P.S. These wheelchairs are a lot easier to push yourself around in. But - we EDSers should know better! If you can avoid pushing yourself in a chair, do. You don't want to ruin your upper body to help your lower body! :) Pushing oneself can lead to dislocations, subluxations, bruises and long-term permanent damage. (And, I know! I stupidly tried to push myself around. My wrists rebelled and my shoulders screamed. Don't think I will be doing that again!)

P.S.S. Yes - I do require help to pull apart the wheelchair and put it back together (and, if help is handy, they certainly do the lifting and put it in the car, etc.) - AND - I get to schmooze with people and convince them to push me around (this does work - mostly it is friends or family - but I did convince the drummer from my favorite band to push me around recently!)...the wheelchair makes my 'invisible disease' a little more visible, which makes me people more apt to help (and while it shouldn't work that way, we all know it does). The only problem lies on the days/hours I am alone - which are many each week. In those cases, it seems best to just stay at home and not move around a lot!


Sitting happily


Assembled - Ready to go


Handles Removed


Footrests Removed


Wheels Removed


Back Folded Down


Wheels are pretty lightweight


Awkward but manageable!




If you have EDS, you may not need a wheelchair. But, there may come a day when it makes things a lot easier. If you have POTS, you may not be bad enough to need one, you may get to that point, or you may be too bad to even sit up in a wheelchair. Everybody is different. We can't judge everyone who has EDS or POTS - everybody's story is different. But, it is nice to know we are not alone. We are not the only person in our late twenties having to seek out what kind of wheelchair will work for us. We are not the only person struggling with the complications that these illnesses plague us with. We all are unique, beautiful and able to make it - with the support of our friends, families, and perhaps a nifty wheelchair.

xo
Dani


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37 comments:

Achelois said...

Really pleased you have new wheelchair. Being a lot older I don't think my hands could cope am afraid with lifting or taking apart! Let alone peramulating myself despite being reasonably small. My body just couldn't take it! Watch those shoulders won't you. Really really pleased for you that you can get around more.

Vegan Danielle Davis said...

@Achelois:
Thanks!! I just updated the P.S. and the P.S.S. on the posting to reflect what I really do - I surely need help taking this apart and lifting - and have learned to not push myself around after sheer pain and subluxations! But, I am thrilled I have the mobility and ability to do things - like see a concert or go through the airport - with assistance! I would certainly not recommend pushing yourself around - and when I am older there will be no way I will pick up something like that! ;) Thank you so much for your kind words and for your thoughtfulness! I am just super excited about it! Hope you have a great week - oh, I just subscribed to your blog as well. :) xoxo Pain free days to you! (Or as much as possible!)

alice said...

hi danielle

been reading your blog recently, as i too have pots. i remember in jan, when i first borrowed a w-chair when my pots was getting worse(although didnt know it was pots at this time), i was a little self-concious.

now im unable to use the chair, unless im going to hospital appointments, as i cant sit up for long. oh how i wish i could feel self-concious again with the chair!!!

just getting to grips with pots, liking your blog. x

Vegan Danielle Davis said...

@alice:

thanks for the comment! i am sorry to hear that you have gotten to the point where you can't sit up. i am there some days, so i completely understand. i am thankful it isn't everyday. keep that chin up! isn't it funny though, what we think is silly and we feel so awkward doing - and then we wish we could go back? i remember when i first started wearing my braces/splints. i was so embarrassed! now, i have a wheelchair to top it off. and most days i am attached to a heating pad, ice packs and the couch/bed. lol. how i would love to be able to just have a knee brace or something! thanks for following the blog. i appreciate it!! keep in touch!

Angela said...

Really glad that you like your new chair... I'm supposed to be eligible for Medicare in January, trying to wait until then, and I want to try to start fighting for one of those scooters. I have a wheelchair, it is a pretty basic black. I don't use it often, and it is so hard to get people to understand that there I days I need it, and days I don't, and they think that I am out for attention. So glad us EDSers know better... the fact that I have had 5 knee surgeries and an ankle that won't stay in joint should be enough, dontcha think? Hope you do well with the chair! Gentle hugs from your fellow EDSer!!
Angie

Wacky Lisa said...

I love my chair. It helps me do things I couldn't otherwise do.
I notice your chair has arms, if you don't need them for lateral stability you might push better (and get fewer bruises) if you go without them.
I had to take the armrests off my chair to stop the bruising on the insides of my arms. The only problem with that is on a bad day they're not there to help me stay upright.
My chair is my Invacare, another decent brand.

Jeff and Jenn said...

Ok, this post made me cry. I haven't had a lot of hope lately and seeing someone who is in a similar boat and does is actually quite refreshing. That wheelchair actually gave me some hope, too. I didn't even catch that the chair was "foldable" when I watched Alberto's video and had resigned myself to looking for the standard ugly kind.... because I was too blonde to realize there were other kinds out there! I know I sound really stupid right now.... but I haven't been researching them for very long at all. Anyway, I'm glad you posted that.
I had a similar wake-up call recently when I made a friend who recently became a quadriplegic. He would kill to be on crutches SOMETIMES and be in a wheelchair SOMETIMES. In fact, he'd kill to be able to go to the bathroom by himself or feed himself regardless of the pain cost. Because people don't understand this disease, it's easy for me to start feeling sorry for myself... but other people out there do have it worse sometimes.
That was really long. Thanks for the post. :)

Vegan Danielle Davis said...

@Angie - I totally feel ya, girl! I tell you, not even my stepdad understands that I need my wheelchair some days. And he makes comments if I go to park in the handicapped spots (which I have a license for!)...not sure when we will ever get the full understanding we need/respect we deserve, but it is a good thing we have other EDSers to rely on for support! LOL! Did you get your Medicare yet? How is the fight for the scooter coming? I would love to hear where you are at in all of it. :) Giant and gentle hugs to you, too! xo

Vegan Danielle Davis said...

@Wacky Lisa - I am so glad you love your chair too! Unfortunately, I have given up on pushing myself around in my chair at all. Either someone pushes me or I take an alternative route! LOL! My wrists just couldn't take it, even with the splints on. Yes, great brand too! Hope your 2010 is off to a great start! Thanks for following the blog! :)

Vegan Danielle Davis said...

@Jeff and Jenn - another super heartfelt comment from you! I am so sorry to hear about your friend. It really does put it into perspective. I couldn't get out of bed this week, and have just started to be able to move around a bit more today. It makes me appreciate the mobility I do have. I can't imagine if I were totally bedridden 24 hours a day. My mom had to take me to the bathroom this week, and that is when it really sank in. We have it rough, but it could always be worse. I hope you are doing well. Any luck on the wheelchair front?

Topmobility said...

HI,

Pride Victory Mobility scooters are great for those who may not be able to get around easily. Power scooters have both advantages and disadvantages. A person who needs a scooter should really pay attention to what they are purchasing if they want to invest in something that will last forever.

Thanks,

Angela said...

HI Danielle! It's Angie! It has been a long time, I know! I'm sorry! I did get the medicare, I did get a power chair, and I am loving it! I couldn't get the scooter with the handles in front, because they were scared that I would dislocate a shoulder if I held my arms out too long. I have a hot pink (Invacare called it bubblegum pink) Invacare TDX SP with a joystick. It is easy to use, and it is saving me a lot of work! Love it! How are you doing?

wheelchairs said...

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Xander said...

Glad to see you managed to get your chair in the end ^^

I've had joint and mobility issues for a good portion of my life as I also have EDS as well as possible arthritis. Recently my doctor convinced me to also get a wheelchair since while I can walk from place to place; by god it can be painfull, especially when a leg gives out.


Good luck with the chair and hopefully I have similar luck

Anonymous said...

i've been reading your blog... putting myself unto your shoes makes my tears fell down through my face,..maybe i cannot handle it..I'm proud of you...

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home medical equipment said...

you're very innovative with your design! i like it. do you have any blueprint of how you made it?

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Anonymous said...

Have you heard of Frank Mobility Systems. They have many great add ons for wheelchairs. I think the self propelled or assist wheels would help off set the stress to your upper body.

Also if fingers don't cooperate when you need to fix a button or mend try u-fix. (Www.u-fix.ca). This product was invented by a lady with Ehlers Danlos and is truly amazing.

Anna Jones said...

Hi,

It was an inspiring article. I recommend this product www.portashopper.com.au which is very helpful for impaired young and adults to have a greater determination,to grow independently and stronger.

Thank you.

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