I think it is time, especially since we may lose our insurance and replace it with not as good of insurance. It has been well over a week since I can walk, I feel so depressed - I am hoping a wheelchair will get me out more and help me feel less isolated. Very demeaning - not being able to do anything. I never thought I would say this - but I think a wheelchair will improve my life. WOW - two years ago I was hiking in the mountains
I have the feeling that maybe your hesitate to get that wheelchair. Perhaps you think your giving in, but if it will give you some mobility I say go for it. I don't know how your ra is.. maybe you won't need it forever. I know that it feels so demeaning to not be able to do things that you once could, but I'll bet you contribute alot in other ways. Your posting on this board is a blessing to me.
I know you miss what you use to do. I also miss my life before ra. I'm sorry that your feeling so depressed, and I hope your day is a little brighter tomorrow. Remember your not alone.
Can understand the wheel chair phobia. Before she died, my wife refused point blank until one shopping mall visit she relented and we got the use of the mall's loan chair. Darling Erika, at first she tried to hide it but the smile on her face as I pushed her around was a joy to watch. No more being bumped by bustling pedestrians, no more wobbling from side to side while window shopping. Like a kid, really. Plus being waited on hand and foot by most (not all) shop assistants. We only used it for mall shopping but it changed her, at the time lousy, life so much for the better. Hope it works for you, too, Roxy. - Des.Thanks guys. I figure I will use it on and off but I so want to get out or do things around the house. I hope I can get one. I am like Deanna - it would have to be electric because my wrists are so bad. I walk so funny, I am way passed worrying about what people thinkIt won't bring your mountains back, but remember that there are lots of stories of RA folks who are in a chair for a while and then improve when they finally hit the right drug, and then don't need the chair or don't need it consistently. We'll hope that this will be the case for you.
Roxy, Im glad you didnt buy the 3 story house.Roxy, You are doing the right thing. using a chair will give you mobility and freedom.
Two of my favorite books as a kid were "Karen" and "With Love From Karen" They are about the life of Karen Killilea, whose mother was one of the founders of United Cerebral Palsy.
Karen struggled all her life to walk, going through years of therapy, surgeries and effort. When she was about 18 she made the decision to use a wheel chair, and made a list of pros and cons, and in the Pros column was just one word..."FREEDOM"
Its a different vantage point true, but for now I think its the best thing for you. When I was first diagnosed with cardiomyopathy and CHF I used a chair for a while. It s a starnge adjustment true, and I was especially hit by the realization that just a year before I was hiking around Ayres Rock in Australia, and now I couldn't walk 100 feet without help.
You have my good wishes no matter what
Roxy if you think that it is time then it IS time! I am sure that you have put it off past the time it was needed like I did and my hubby insisted last week. I actually got just a transport chair for now from Wyoming Independent Living free! I can't believe that I got something free as we could have never afforded one.
Our insurance won't pay for a transport chair and I cannot wheel a wheel chair as probably you can't either so my mobility company, Dr and I are going to start the long struggle for an electric one and a lift. I got the transport chair because the electric one will probably take a 6 to 12 months fight. Like you I will have to go on Medicare a couple of years after the disability award and it was recommended that I get what I need now while I have good insurance.
I say good for you!
I know you remember when I went through this struggle. I have the manual chair which does very little good because of my shoulder. But on my worst days, it's something. It's going to be a least two more months before they get the mobility chair. And, I keep thinking, knee surgery, maybe I won't need it or wheelchair ramps. Maybe. But then I'll have a day when the tremors flare and the RA flares or the fatigue is so bad and I just want to get out.
That's it. It is freedom. You can go a lot of places in a chair. And, there are people do some crazy things in them as athletes and outdoorsman (woman, in your case).
Right now, your meds are not doing it. But you still have a lot of options for improvement. They haven't tried all the things they can so you have opportunities to regain what you have lost. And, you haven't had any surgeries which means there's still a lot to do there.
You need a doc that's pushing to get you better. And, it's going to come. I know I've been down a lot lately too. But that's because of the battles I've been fighting. I have a lot of hope with the surgeries.
I keep dreaming I can ditch the chair. I ditched the cane about three times I think. We have such a love-hate relationship. But my PT is helping me a lot. Yours is going to progress eventually if they can just get you out of some of the pain and get some proper meds that help you.
Here, Roxy, here is some hope. I'm going to hand it over to you. I find it's hard to hold onto. But do. Hang on very tight. And, sometime, I am going to hear a wonderful story from you and of a new adventure that you went on with Foxy. It might not be quite the same. No, it will be different because the taste of that victory with be extraordinarily extreme.
OMG. That just dawned on me. Foxy and Roxy. How slow am I. :|I think they need matching sweaters. Roxy, do you think your sister-in-law could make you a set? Oh, but the other dogs are going to be jealous....
Yes, I can see it someday in the headlines:
ROXY AND FOXY TOP MOUNT RA!
These two champs have overcome all obstacles to climb to the top of our highest mountain in Oregon. Formerly, a Park Ranger, Roxy was hindered by the sudden and devastating and often misunderstood disease of Rheumatoid Arthritis. But she didn't give up and through a steady struggle with physical and water therapy and an undying sense of adventure, she found a way back to the outdoors. Today, you can see her in a picture with her new and closest companion, Foxy, as they reach the top of the mountain. In the background is her family, Brett, Kelsey and Colton, their pride beaming. What is really remarkable is the number of friends from around the country that have travelled here today to see Roxy make it up the mountain. In interviewing several of them today, we have discovered that they all have RA too.
"We knew we would see her here one day."
"No, I couldn't miss this. Took my painkillers and flew right in."
"Yes, she had to use a wheelchair for awhile. But amazingly, she didn't let that hold her back. Her courage is unbelievable."
"I agree, she's my hero."
"And, the best part, is that smile that just won't leave her face. You just have to love that woman. She has heart."
You are such a great writer. I love you Deanna. It is true, all the times I have been told on this board that it got better after being this bad have kept me encouraged. Today I feel much better since yesterday so we are going to get some paperwork done. I plan on writing more later but while I am good - I need to do some long procrastinated bills with hubby. I love your story and I can believe itMe too with the hope part Roxy, me too.
Gosh Roxy, I can't believe everything that has happened to you in such a short time. You are certainly at the bottom of the hill and now it is time to start climbing to the top again and I know you can do it Roxy. You and Deanna can do it together. What a team! Please take care Roxy and I will keep you in my prayers. Here is a great big hug from the East coast to the West coast!!!
[QUOTE=roxy]IWOW - two years ago I was hiking in the mountains
Roxy, I'm new to the forum, however, I've been reading the messages for the last several months. I decided to join today, when I read your message quoted above. I have to tell you I so much agree with you, as last year I bought an RV then sold my home (2-story,4-bedroom) in hoping that I could put in for a transfer at my job later on to move to Arizona. Well, that didn't happen cause less than one week later after I closed on the house, I came down with some serious ankle pain, and 2 months later diagnosed with RA. I truly believe that GOD guide me to selling my home because there is no way I would be able to live there right now. My RV has 3 steps and that's enough to do me in some days. I still have plans to move to Arizona and not for a job, but now for the weather. I live in Ohio and its been very cold and no good for anyone with RA. I truly hope the wheelchair will reduce your pain and could even help you walk sometimes by being off your feet giving them some rest. There is hope for all of us, and I'm not giving up and it doesn't look like you are either. This is a great forum, and there are some very caring folks on here. Take care of yourself Roxy.
Hey Roxy~I came here looking for you and was pretty suprised to read your post. I didnt realize that you were having so much trouble...I am so sorry that you are, but I think that getting the wheelchair is a really good idea. Your body will still be able to rest, while you spirit will be lifted by the freedom to move about the house and maybe even get out. I went to the grocery store a few nights ago and for the first time ever asked to use one of the little electric carts. I felt self conscious at first but as we (I had my kids with me) made our way through the store the realization hit me that I was shopping and I wasnt miserable with pain. I wasnt counting the aisles that I still had to go down, and I wasnt skipping things to cut corners and avoid the extra walking. It was truely a revelation...this was the first time in a year...the first time since my diagnosis...that I was actually able to shop with out pain. To enjoy something that I used to enjoy..someting I have come to loathe in the last year.
My point is that you have to do what ever it takes to improve the quality of your life. If that means using a cane or a walker or a wheelchair it is worth it. It doesnt mean it is forever...maybe it does...but you wont know that anymore than you can predict anything else..so why focus on the idea? (not that you are) But just take each day as it comes and concentrate on getting your self as well as you can, and savoring every minute of joy that you can.
lol...easier said than done..I know..but you are strong, and you have lots of support. I am like you, I love my family. My husband has a good heart but has his own demons...my children want to help me but they still so much need my help...and if it wasnt for the dear, sweet friends I have made here and at sushi...I would be lost. You guys are my support system, my rock(s), my virtual shoulders to cry on. And being able to be here for each of my friends when they are having a bad day-week-month-year....humbles me. And it gives me strength.
Roxy I wish you could walk with out pain....but if you need a chair for now..then I hope you are able to get a nice chair from your insurance company with out too much of a fight or time. Good Luck Girl! I'll be thinking about you....we all will. You know that.
When we met up with our new friends the 1st day I refused the chair. and my DH just shook his head. An hour and a half later I was drenched with sweat and completely miserable. At the 3 hour mark I wasn't sure if I could make it back to the car. No we did not get to go to dinner with our friends....I fell asleep at the motel. When I woke up from my nap I could hardly make it to the bath room. Then we set out for dinner... I drove the car across the parking lot rather than walk less than 100 yards. So to make this tale shorter I used the chair the next day. My DH pushed me and we had a lovely time. It isn't so bad to be in a chair...if the pain stops long enough to enjoy life a little. Roxy go for it. We can always get up and walk away from the chair when we want/or need too. The chair isn't such a serious thing - it was my attitude that was seriously bad. Most ins companies go along with medicare rules on power chairs and scooters - you have to be in trouble moving from room to room in your own home - nearly all the time.
I am looking for a small power scooter I can manage loading and unloading from the car. Used!
I tried to Pm you but your box is full and now I know why... I am here to give you as much support as I can. I am sorry I have been away. been so busy with the family. I was hoping you were feeling better when I check back in and I am so sorry things are so touch on you now. I so hope this is just a temporary flare and that the RA will settle down soon but until it does, you can go here and there in a chair... I see these girls at church do it all. You just hang in there. I was reading up on gluten free diets which is what I posted on another page. I was hoping it might help us here. I know the RA is so aggressive at times. But just know we are here for you. If I can help you please let me know.
Donna
Thank you all. I go in at the end of the month and pray I don't have too many obstacles in getting an electronic wheelchair. When my wrists and ankles flare, I cannot walk - I stumble to the bathroom in agony. That is no way to live. It upset Brett considering me in a wheelchair but I told him - it would only be for when I am flaring and cannot walk. I go bonkers laying around. This flare is better, so I am getting around better but this flare lasted almost 3 weeks with no mobility. It depresses me. We will see. I have appts. coming up with rd, pcp and pain mgmt. I am way better but you never know when it will strike again Good luck Roxy. ARe you still taking the enbrel?
Yes only because I cannot get in sooner to see rd. I don't know what she will recommend but by my research and lousy veins, I am choosing Humira. I pray I am going to be one of those that just a change in biologics does the trick.
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