I was diagnosed with JRA as a child; now, polyarthralgias, RA, Sjogren's, Fibro. I work full time (office-type work) and have an 8-year-old son.
I was diagnosed late as an adult (30s), and had sudden onset (or remission). My doc first prescribed a walker, and after a few months' use of that and with general degradation in health, he recommended and prescribed a wheelchair. My insurance covers 100% - of the folding "granny chair" (no offence, this is what they're calling it).
I see my chair as a liberator - I can get between spread-out buildings/conference rooms at work and can go shopping, enjoying the shopping experience instead of focusing all of my energy on hobbling around, and then being in too much pain to move for several days after. I do as much for myself as possible, opening doors, toting packages, getting it in and out of my car myself, etc. I don't use my chair in my house or for very short trips (like convenience stores) - instead I use my cane.
My husband curses my chair, and continually asks when I won't need it anymore. This depresses me, but whatever - I feel the same way.
The bigger issue is that I want to get a better chair, from Colours. If I have to use the thing, at least I'd like it to fit, be lighter, and have *some* style. My insurance says that because of my diagnosis, they consider anything other than the "granny chair" a luxury (they'll reimburse the "granny chair" cost). I don't care, and I'll pay for the chair myself, but...
All of this makes me feel like a hypochondriac. Should I just tough it out - am I just being a baby? If the insurance is considering a decent chair a "luxury," is that because most people like me just hobble through their work/shopping day in pain and deal with it? I thought of my chair as a liberator - letting me do the things I could do before at close to the same speed and without having to literally crawl on all fours over stairs and stuff. Or fall down (I've done that - embarrassing).
I could swap the tires (live in Michigan) for parks or snow/ice, actually have a lap for my laptop (my angle right now makes everything just fall off), and just maneouver better. But after talking to my insurance and dealer reps lately, I'm starting to feel like a baby because I'm not paraplegic.
Please respond if you have advise on what I should do. I want my freedom back, but not necessarily at the cost of my honour or this guilty feeling I'm starting to get.
Thank you! :)
My situation is a little different. I only needed assistance when I was shopping but was much too proud to use one of the chairs. We were at the largest military exchange in the world and I couldn't walk down one aisle, arrrgh! Because I wanted to shop so badly I threw vanity to the wind, got the key to the little motorized chair and took off. I never looked back. It opened up a whole new world. I could actually look and shop the whole store, still have energy to go to the book store and coffee house. Wow, all 3 in one day! Hadn't done that in 2 years. I had the flare from hell for two and a half years and even now I sometimes use the chair if I'm tired or hurting from the damage pain. Don't feel guilty, don't be too proud. You do what make your body FEEL BETTER. It's for you and no one else.
Sylvania,
You deserve the best life you can create for yourself with RA. We only go around this way once--ridiculously trite but poignantly true when you have an eye-opener like RA and other diseases.
And we're old enough here to have figured out that no one else is gonna create a good life for us. Either we're going to do the monumental work ourselves, or it's not going to get done, no matter how much loving support we have or don't have from others.
Sounds to me like a good, comfortable, high-functioning set of wheels is a cornerstone of a good life for you right now. You don't need permission or approval from anyone to need it, or to work at getting it.
I hope you 'encourage' hubby to suck it up and get over it--the whole wheelchair thing. I'll bet he doesn't settle for the lowest-end possible rattletrap vehicle to get himself around town in. Whether he's a high-end or practical-economy car kind of guy, he's probably not settling for the bottom-rung barely-functional car in his range. And if he's stuck with something like that, he's wanting something better pretty bad and not ashamed of his desire. Am I right?
Your chair is even more important than the family car. You guys don't need a car to get down a grocery aisle, just to the grocery. Your chair is an extension of yourself.
I think it's lovely that you've embraced having a chair for yourself. I hope I have the same attitude if the time comes I need one frequently or occasionally.
I have hopes for my attitude. They made me ride in one at the hospital when I was in for some tests, before I knew it was RA. They saw me struggling and barely able to walk and just about pushed me into a chair despite my protests.
It felt so good, then, to get off my painful feet and be propelled to where I needed to go. Such a relief. I told myself if I ever had to have a chair on a regular basis I would focus on the relief and the joy of getting somewhere easily, instead of on the frustration of not walkking. We'll see!
Sylvania,
I just got my "granny chair." I had to fight with the doctors to get it. They didn't care if I fell down. Now, I have to fight to get a different one so that I can get it in and out of my car. But they don't want to give me one unless they can say I am incapable of driving a car. That's really not fair.
Well, I'm fighting for the chair because right now I really need it. I'm going to fight to get back out of it. But it helps my spine and it helps my energy and I want to get out there and live life.
It seems to be the policy of insurance companies to give the minimum. You are going to have to fight. You can also go to outside agencie to help.
But I agree, this is important. Get the chair you want and spin it, girl!
You need to do whatever it is to make your life easier!!!! I mean think of all of the gadgets that used to be considered a luxury that are now just about a necessity...(like cellphones, laptops, microwave ovens)To heck with anyone who doesn't get it. I say GO FOR IT!!!!
Sylvania, Get whatever you need to improve your quality of life. I was resistant to the cane but it gave me so much more freedom. I was embarrassed to use the carts at the store, but now I can go shopping with hubby and not be in agony at the end of the trip. It is also fun. I have a walker that I use in the kitchen, but if I have to, I will eventually take that out with me. We have to do whatever we can to improve our quality of life. Don't think you are a hypochondriac. That only reinforces the guilt that comes along with RA. We all think we are hypochondriacs at some time or another. It is because we never get validated for our pain. That is because you can't see it. Do what you can to improve the quality of life and tell your hubby that you don't need to hear his sarcastic comments. It is hard enough needing the chair. Gentle hugs and hope things get better. RoxMy life would be so miserable without my chair! I hadn't gone shopping for years, except for a quick trip to get what I needed, now I love to shop! I have to use a motorized chair because of my damaged shoulders. I do drive a car. After I got my chair I bought a handicapped van. I drive into where the passenger's seat went, then transfer to the driver's seat and I'm off - very easy! I didn't tell anyone I was going to drive before I got my chair!. Keep looking for what you want - ask your doc to help by presctibing a folding one or a lighter one. Good luck, Kathy
Sweetie, everyone has already stated my thoughts as I read your post, but I wanted to add my love and support, at least. You get exactly what you want and need to make your life better, Hon. I'm so sorry your hubby doesn't understand, but don't let that dissuade you. Hopefully he'll come to understand in time.
So far, I only have my Disabled parking permit and my cane, but I sure hope that if and when the day comes I need more, I am met with better support than you received. I hope you get your chair and do what's best for you, and that those around you come to a better understanding very soon.
Big hugs!