That's all I can think about today, all the wonderful things that I would do.
I'd write a bestseller (or several) and then buy a horse ranch in Montana or New Mexico. But I have lots of hired hands to shovel out the stalls and fix the fences.
I'd have a big old porch that I could sit outside and watch the blue skies change to storms and I'd never think about bones or joints. I find me a good-looking cowboy who could put up with an independent woman.
We'd go for long rides and see the beauty of the land.
Then I'd work for social change and have lots of kids around. I'd make sure my sister and my dad visited often so that they could enjoy the horses.
I'd go for long walks every day with my favorite dog and watch the wild antelope run.
I'd write every day, paint and sing.
Oh, there's just a thousand things I'd do if I didn't have RA.
Deanna, that sounds wonderful. Just write the bestseller and you still can have all of those things. I know you can do it with a little help.I am with you on that one Katie. I have posted something similar to what you said on another board I was a member of.
It is all I have ever known, too. I have had some glimps into how it would be like without RA thru remissions and all, but those days fade and I cannot remember how they were, and I know is how my life is with RA.
Sorry guys, but I'm not with either one of you on this one. I have lived life without RA and I can see my life diminishing. It is not enough to accept this situation as is. I want the life that I have dreamed of. I cannot stay at this point where I cannot do most of the things that I want to do in life.
I know it's a matter of viewpoints, but it is important to me. It's dreaming of better things that has got me through some really tough situations, not just RA.
I am not looking at going backwards. I had that life already. But I certainly do not want to settle for a life of increasing crippling illness. That's where the doctors are starting to put me. They seem to be willing to give up on me. I don't want that. I'm not giving up.
I want the ranch, the horses, the cowboy and the freedom of land all around me. I want to do as much as I can, not as little as I can.
Right now, I can barely walk, hardly use my left arm, my eyes don't work right and my nerves are going crazy. How can I settle for this? No way am I going to do it. I will try everything that is available to me to make my dreams come to.
I am going to fight for everything that I want whether RA wants to grant it or not.
Even with RA I find myself making adjustments to live as normal life as possible. Granted I can't rollerblade anymore but I do go rollerskating with 4 wheels instead of two. I may not be able to drive the 4x4 thru the mud bog...but I can sit in the passenger seat next to Danny and still have a ton of fun with him and the girls. I don't focus on what I would be doing without RA. I keep my focus on how CAN I do that with RA. I am going to go sky diving this summer. It is just that I have to do a tandem jump and let the instructor do the landing.
I refuse to let this crap disease that I did not ask for (thanks MOM for handing this down to me) dictate my life. I will adapt and what I can not adapt to...oh well...I will go find something else to do that I can do.
I honestly do not really remember the days of no RA. I know how I feel when I am at my best and that is what I go with now. I don't look back. I look forward.
I want to dance and wear stilleto heel shoes like I did in the 60s!Before RA I had a highly responsible position, high stress, racked up lots of air miles, on several boards, great salary, lots of prestige. After RA I remarried, retired, and now live 6 months of the year on the Pacific coast in Mexico and 6 months in the U.S. Why would I want my "before RA" life back? I've traded my suits and heels for swimsuits and sandals. I've never looked back..........always stay in the moment.if i woke up tomorrow with no RA symptoms or damage, the first thing i would do is run as fast as i could as far as i could outside.When I was in remission I just enjoyed the time without pain. I appreciated the fact that I was able to work in the yard and in the house without the stiffness and agony. I did more with my sister and my daughter, I dated, I laughed more, and I cleaned the garage.* I did not cook!*
I have had RA all my life but wasn't dx until 1991. A name was placed on my pain and limitations and all the weird bumps on my hands. I learned a new language that identified and defined my pain, words like Rheumatoid, Osteo,synovial cysts, bone erosions,Plaquenil, MTX, and Enbrel all became a part of my vocabulary. Blood tests which included new names such as sed rate became important to me. I lived by them, surrounded my life around the numbers and the PDR.
It is a lifestyle change, somewhat controlable but more mysterious than the average joe disease;but identifiable and diagnosable with a hope of remission and the future of a less diminished life than otherwise I would have had to lead.
I never asked for it that is certain but the key to it all for me is the ability to cope with it to the extent that I can actually live a semi-normal life adjacent to the life I had planned out for me or at least had the hope for.
My kids knew no other mom than the one with RA, through the really, really bad times when not all the biolics were around. Now that was a tough life. Going to college and working part time until I could no longer work, then it was just trying to maintain some sanity in my world and a happy life for my children. I was a single mom cause a divorce hit through it all, but I did the best that I could, kept the unbelievable pain all to myself as much as I could and tried to make a loving and secure home for my children. It wasn't easy. I had to take care of a home and the yard and my kids and the animals and my RA. Like I had mentioned so many times before, if it were not for my Rheumatologist, I would have never had made it through it, my children would have suffered way more than they did and I would not have the coping skills that I have today to get me through this next phase in my life.
Like Deanna stated, it is just old hat to me and that is for certain, unfortunate, but certain.
I am gonna live my life the best I can with the pain and erosions and synovial cysts; blood work, Dr. visits and of course the meds that make me so ill. I am going to do it for me, my family and because I am sure the DR.'s would appreciate a positive attitude. I will most certainly cry, I will become sad and even depressed. I will be in pain, go to the Chiropractor, spend countless money on medications and heating pads and braces, and possibly more surgeries. When you stop counting surgeries for your lifetime at surgery number 25, you come to realize that you need to be thankful for the medical procedure rather worry about the scars or the pain. This is the person I have become and I have accepted it...don't like it....would love the lives all of you have described ( especially the beach scenerio and the hot guy description).
It is fun to fantacize of how life would have been but it is a fantasy for me. I have a sick mother my sis and I are responsible for and a teen daughter that I have to raise and get her to the "responsible adult" part of her life. I am not done with what I started when I was younger. It takes longer, it is discouraging and most of all it is not what I wanted. It sucks, it isn't "fun" but it is what I have to do so I might as well enjoy it and be thankful that the people that are in charge of helping me figure this all out are kind and helpful. (the main reason why my RD is in Indiana and my PCP here......Can't find a decent RD yet here).
What would I do if I didn't have RA?I don't know. Probably wouldn't be the person I have evolved into, probably would be more athletic and ride my bike more, prob wouldn't have all these wrinkles from the lack of collagen, probably wouldn't have all these caps on my teeth and root canals from my teeth cracking all the time and I would definately have a lot more money!
I think I may write a book soon....just maybe.
Jode
I'd run up and down stairs all day long in very high bright red stilletto heals, swigging red wine till I collapsed! anna uk Now that sounds fun!Love the idea of the re stilleto heels, red wine combined with the running as far as you can and doing cart wheels. No doubt I'd need casts for the broken bones after that, but a girl can dream!I'd get a puppy to run and chase all with all around the yard.
I'd bound out of bed in the mornings the way I have NEVER done, RA or not, but the way I've seen others do who go from fast asleep to zooming in seconds flat.
I'd go visit Deanna at her ranch and ride horses without worrying about falling, jarring my neck, or trying to figure how to grip the reigns. I'd leap gracefully from that horse (hah, like I ever did that to start with!), and land on both feet with never a thought about ankles, toes, or tendons.
I'd make travel plans for anywhere I wanted to explore without worrying about exhaustion, injury, medical resources, and all that. And when I got there I'd go hiking in the mountains, take long walks in the cities, traipse around all the museums with my only complaint the blisters on my feet, wear high heels to dinner (maybe even those red stilettos!), and stay out late dancing or walking in the moonlight (instead of falling into bed like a toddler after an early supper).
As I once planned to do, I'd plant a large, lush garden at the lot where we're going to build our retirement house. I'd spend long days and my luxurious stores of energy tending my rambling gardens while I listened to the birds and let time wash over me while I lose myself in the dirt and seeds and weeds.
I'd make that house we want to build a two-story one, like we wanted, and I'd run up and down those stairs like a kid the way I've always taken stairs, until this year. I wouldn't be thinking about designing around grim possibilities like wheelchairs.
I'd be a free spirit in my kitchen again, hopping up and down from the counter-tops in order to reach things on the high cabinet shelves, wielding heavy iron skillets like Amazon woman, chop-chop-chopping and kneading and stirring for hours on end.
I'd go to libraries and bookstores and carry around big stacks of books, just because I could, and hold a big, heavy book in my hands to read, also just because I could.
I'd plan full days and nights, instead of planning a day or a night but not both, planning around naptimes and rest-periods...I'd feel that glorious independence of being an Adult again.
I'd know that when people said to me 'how are you?' they didn't really mean it, and when I said 'just fine' I WOULD really mean it.
Whatever I thought up as soon as I woke up in the morning, it would be something besides RA.
And instead of just walking on the beach, I'd RUN on the beach. Deanna said to dream, so I'll dream big.
This was fun.
Now you're talking. Oh, I want to do all those things with you. You can come hang out on the ranch any time. Fun, yes, fun, let's have lots of fun.This is silly, but I use to twirl a rifle in high school (You know, those pretty shiney things girls twirled in the marching band)! That darn rifle (fake) is in my trunk and has been there for about 3 years now (I took it from my parents house 3 years ago with full intentions of twirling it for fun)! I have only had RA for 2 years. I would get that thing out and twirl it and throw it up in the air and catch it! LOL Ode to the things we could do!!I'd like to go out and play a round of golf again!!! And put on stillettos too (now that would be a sight.... tee it up!!! ) And be able to shop til I drop, because I've run out of money, not because I can't function!!! I would go back to set designing and painting. I was just getting going good with a few shows under my belt when this crap started. I would love climbing ladders, stretching, painting, building, creating! I miss it so much.Hillhoney, you said it! I hadn't realized it, but it's true. I want to be superwoman again!
No way I could have really appreciated when I was, but wow it would be nice to be there again. It was a good run.
I hope you do get to do your set design work again. It sounds so nice, reading about you doing that.
I would go back to teaching tumbling, so that my daughter can enjoy what I got to do. I would just love to be able to not be so hateful because of all the pain. My daughter has said she wishes that I didn't hurt so much.
You can still take her to a tumbling class. It's your participation in her life is what matters.
Deanna, with apologies if you have already looked into this, please check out either www.roadback.org or www.rtheumaticsupport.net
There are some people living with RA who can actually claim remissions that last, and a better future. All the best!
Ok..fantasy time....First I would find me a decent man and be locked in a hotel room with room service for a very long time!!!!!!!!!
I would then take him with me and we would ride bicycles alllllll the time, walk on the beaches, go to Deanna's and ride horses then go to my nephews in Colorado and learn how to ski and ski and ski. WE would go on cruises and enjoy our middle aged/seniior years however we wanted hopefully ending up with a winter home in a warm climate.
How was that? *giggles*
I would do what i have done this morning. I woke up with stiffness but no pain once the stiffness wore off I put our little westie puppy in the car and went to the park.Both of us waded in the autumn leaves and walked in the winter sunshine.Then we went to a friends and had a chocolate fondue brunch.( i'm in heaven). Home now for a rest but i feel so normal for doing normal things.KNITDoesn't it seem like most of us with RA were high achievers before? I wonder if there is a connection ?????????I think about what my life would be like without this, it would be so different and so much easier. I would not have to wonder what people are thinking of me because i cant walk that day, or just because I am limping. I wouldnt have to worrie about sitting out during gym, and I could just run, all I wanted to. I would have gotten my letter for field hockey, i am in 9th grade too, that would have been so cool, i was 2 games awa from getting my letter, and i missed half the season, i was not feeling good for half of the half that I was there. I live to play field hockey! I would get better grades in school, I know I would! I knowI should not think of this stuff, its kind of like jelousy and envy, which is aginst the 10 commandments. Sometimes it makes me feel better though, keeping it bottled up inside can be a disaster, I did that last year, it is not worth it!! Thank goodness for this message board!!!!