This weekend was a really bad one for me, mostly because on Saturday I attempted a trip to the shopping mall (DH and I were visiting with my stepson).
We started off by parking in a handicapped spot (I got the permit about 2 years ago because of herniated discs)..something I try to do only when I really need it. When my stepson called us "cheaters" it really hurt my feelings, but he has issues of his own right now.
By the time I had gotten from the parking lot into the stores, I was already hurting bad in the knees and had stabbing pain in the SI joints. We found a store with chairs and they browsed while I sat. After a few minutes we went to the next store with chairs, but I was barely making it between them. Then we went upstairs and I thought I was going to die. I had to sit for a very long time before I thought I could even attempt the next walking bout. Keep in mind the whole trip was probably 45 minutes and we didn't go very far through the mall, plus I was on painkillers the whole time.
Last time I tried a trip like this was Thanksgiving weekend (again with the stepson, 14-year-olds love malls) and although it was hard, it wasn't anything like this.
I'm starting to wonder at what point is it appropriate for me to consider some sort of portable transport chair. I don't think I need it to move around at home or at the office, but any kind of shopping or outing is really too much for me. I don't go out that much (except for work and doctors appointments), but I'd still like to "have a life" once in a while. DH wants to go to a small museum this Sunday (and I want to go too!) but I'm afraid.
Getting any kind of chair seems like a really big step, and a strange one, because it's not like I can't walk at all. Is this something my doctor would tell me when I need to consider it, or something I should be asking him about? How do you know when it's time?
If your mobility is becoming a problem and stopping you from living life to the full then a chair for trips out is a good idea.There is no sense in hurting so bad that trips become something you dread rather than enjoy. My chair is my life saver as is my mobility scooterI asked my Dr last week for a chair Rx and she gave me one. I think that our Dr's might be too busy to notice when we need mobility items and if we think that something will raise the quality of our lives then it is time. Like you I can walk to the mall entrance and hobble around my home but forget shopping the mall or going to a museum. I decided that I was not able to be with my family and it was time for a chair.
Now I need a letter from the Dr to try and get my insurance to get me an electric chair. I can only be in a wheelchair if I have someone pushing me due to wrecked hands.
Can you borrow or hire electric mobility chairs at malls,Thanks for the replies. I guess I should stop thinking that I'm not "sick enough" to warrant a chair...
I definitely couldn't use a manual wheelchair because my hands, arms, and one shoulder are bad. I was thinking of a simple foldable "transport chair" that my hubby could push, but I'd hate to rely on him to do that.
I know some places have chairs you can reserve, but unfortunately this museum is quite small and does not.
I think I will talk to my rhuemy about it during my next appt. In the meantime, if I go anywhere where I can rent one, I'm going to do it.
Thanks.
I love the carts at the markets or dept. stores. Try to choose those stores. That is what I do and shop on the internet. The difference between using the cart shopping and not is whether my day is ruined or I come home and can enjoy the fact I went shopping. Those carts are fun and I got way over the embarrassment.
I am renting a wheelchair to go to a bead and gem show in Tucson. It is a whole 2 days on the feet affair and I can't walk for 2 hours most days. Certainly not 2 days in a row. I balk at a wheelchair because my elbow are ruined and I can't push myself any better than I can walk - but poor dear hubby will push.
I'd love a little scooter of some kind.
I need a chair, but also have problem with upper mobility and strength. They got me a manual chair that I cannot remove from my home. If you are on Medicaid, you can only need the chair for within your home. You cannot even need it to go to the doctors. And wheelchair ramps come with a lot of restrictions. Somebody came by today with an offer to help me get ramps. But I have to come up with 10% of the costs which is not bad unless you have virtually no income. In that case, you can earn toward the approx 0 for every hour you go to one of their social events. Sounds ok. I'd really like to socialize. But all the events are miles away and in the downtime area which is impossible to park and navigate. So, I would have to use their transportation. That sounds okay, but then I would have to travel starting at 8:00 a.m for something that goes from 11:00-1:30. Then I would spend the rest of the day traveling back. I know I cannot physically do this. Just 1 hour doctor's appointments kill me. I cannot sit in the state assistance or Social Security office. It hurts too much. The activities are bowling, going to the zoo and cooking. I cannot hold a bowling ball. The zoo would be nice if I can get help getting around. But that's on the day of my surgery. And, I can't really cook any more. But I was thinking of trying but it sounds so hard. And, even if I could do all the activities since they only have about 4 a month, it would take me months to even meet my share.
It's a great program but really doesn't take in consideration people that are just too weak and in such pain. I don't know what to do now.
Just came back from shopping with the carts. They hurt my spine so much.
But I definitely would get the chair and get out there and taste every bit of life you can swallow. Do it for yourself and all the people like me who seem to not be able to.
I've mentioned this before,Marian, InnerGlow, Bonny and anyone else who is interested... But I got a RX from my doctor for a power chair and after finally getting approval from my insurance company, I found out that my co-payment was 50%. After I went to their vendor, my portion would have been 2500+ for a power chair.
My husband looked at Costco and we also received a coupon for 0 off of a sport model (which is smaller and easier to move around) mobility scooter. We decided to buy it ourselves for 0 with the coupon. Quite a difference from 2500 for our portion of a power chair! I called the insurance company and told them what we were going to do.
I agree, Bonny, that sometimes our doctors just need to be asked for a prescription and they are happy to do what it takes to help us keep as mobile a possible. At least my doctor is. It was his idea for me to get a chair. In fact, he insisted upon it.
Good luck, everyone. It really does help, if you can just get out a little. I still don't go out much, but I can when I feel up to it with my scooter.
Hugs to all,
Nini
Nini because you had a script for it, you can take it off your taxes... state anyway.Nini I am a bit afraid of what my co-pay will be as well. I will know in a few weeks and agree with just getting the scooter.
InnerGlow I tried for a transport chair and insurance won't pay for it as Deanna said it must be something you need in the home even though we know that we need it for everything else.
Another reason I am trying to get something now on hubbys insurance is because when I am awarded SSDI within 2 yrs I must go on Medicare and they are even harder to get to pay for a chair and consider a scooter for recreation.
It is always a fight to get what we need and it certainly shouldn't be.
Deanna I will be praying for your upcoming surgery.
Thanks, everyone, for giving me some things to think about. It really is amazing how hard it can be to get help when you really need it, and sometimes doing it on your own (rather than through insurance/govt) is the lesser of two evils. I keep thinking that there should be a manual out there with all these "secrets"...
And one other thing, DH and I each have small two-door cars. Other than a foldable transport chair, I have no idea how I could possibly get a motorized chair or scooter around.
My mobility scooter goes in the boot of my friends little 2 door car. Its very light weight as well. I know it came from America but not sure what company as we bought it off ebay from an American womanI'm noticing your meds and I'm curious if MTX was prescribed with your Enbrel. I know so many can't take it; but have you tired it before? (Surely you have; but wanted to ask)
Actually Lovie, I have not. The RA dx is new and my long-time rheumy only suggested Enbrel to start. In my short time on these boards, I'm realizing that's somewhat unusual.
I guess that's something to ask my dr about on my next visit, which unfortunately is not until March 6.
Can you tell me about the benefits of MTX vs/concurrent with the Enbrel?
I'm not eager to add any more meds than I have to...I'm on 13 right now and the pain specialist wants me to add an anti-depressant for pain (he doesn't believe that I've already tried them all, with plenty of side effects).
The MTX and Enbrel usually work better together. But most docs start with the MTX and add Enbrel. Then they work down on the MTX.The testing showed 2 dmards work better than 1.
MTX is the most commonly prescribed drug cause insurance company's like it. They only want to pay the big bucks for the biologics when MTX has failed to keep the RA in check. In the USA we have a step up system.....it really isn't about what the docs want for us...it is what gets paid for with the least amount of paper work hassle. (Docs don't really get paid for doing paper work - usually. At least not by ins companies although you and I have paid out of our pockets, right Deanna?)
Oh my doc suggested looking for a used scooter or chair today. He said there is quite a bit of turnover.
(Durable medical equipment is usually way over priced for what you get...00 to purchase an elbow splint that was designed to keep traction on to help me regain extension after an elbow surgery. The parts of that thing could not have cost more than .)
Anyway I'm going to look for a small gently used scooter. Maybe I can find one that will cost less than my co-pay if I could get it approved which I can't because I don't need it to hobble from bed to bath. I need it to enjoy life a little!