RA has taken my patience and replaced it with irritability. It has taken my spontaneity (sp?) and replaced it with caution. RA nabbed my altruistic nature and made me selfish (ie - staying in bed longer, taken 30min hot showers, not helping as much with the housework, etc). It has taken me from independent, to being dependent for even the smallest task on some days. I think for anything RA has taken, it's replaced with something different. Not always a good different, but something different nonetheless. RA has given me the feeling of pride in certain aspects of my life for achieving even the smallest of goals. And it's given me a much greater appreciation for the little things. I do think it has made me a stronger person and if I must have a disease, at least I have this one and all the good friends here to share it with me.
Hope you are all having a superfantastic and extra-comfortable day!
My best friend was diagnosed with stage 4 breast cancer and went through chemo, radiation, experimental therapy and hell in the last year.
All I have is RA, PsA
yeah Lin,
My mil was in the hospital for 3 mos with colon cancer. She had multiple surgeries for bowel obstructions and did not eat anything,
anything for 97 days. Made me feel a little silly complaining about some swollen joints.
Also, Jaine I don't know how you do it. It is bad enough having RA. If one of my children had it as well, I'm not sure I could get out of bed. How wonderful though, that he has someone who knows how he feels. You must be such a comfort to him, not to mention an outstanding advocate!
I'm really so much better off than many here on this board. You guys are such a great reality check for me and I'm very thankful. (the vicodin must be working
I'm a little off topic here because I want to say what I hate about RA . Since I'm in a bad mood nothing comes to mind about anything good it's done for me.
I hate that RA is like a constant companion. You know like that kind of person who likes to be around you but you can't stand them? You wish they would get out of your life but they won't. You try to ignore them but they stick around. Cripe we try to poison this companion with the drugs we take but they won't take the hint! When the alarm goes off in the morning and you try to rise for work and you lift the blankets from yourself -RA says I'm here(!) as your hands ache. I don't like having this companion around first thing in the morning when I'm not even half awake yet! Get out of my face you jerk!
All day anytime you turn a door knob, steering wheel, try to open a jar- hello, hello- you have a chronic disease and I'm going to stay with you the rest of your life!
This is just on a regular day. This is nothing compared to when you are in a flare. This is nothing compared to our members who have disease so severe it is affecting so much more of their bodies, causing deformities, not responding adequately at all to the RA meds.... Their companions are downright EVIL!
I know I have to get a new outlook- it doesn't do any good to have such negative feelings. But that's how I feel today.
everything and then some.
given me?
I'll have to think about that.I always thought I was tough, but now I KNOW I'm tough. I always knew my husband loved me a lot, but, boy, has he proven it now, over and over again. As I swanned through life, I thought if anything bad ever happened to me I would deal with it, and now it has and I have. I've been given the gift of cutting myself a break. I don't blindly push myself any more. It's a bit of a lovely feeling.
It's certainly taken my confidence in my body, that it will do what I ask it to. It's taken my sense that I know what will happen today, tomorrow, or next week. It's removed my youth, a few years before time would have done it as I grew old.
Summing up, emotionally and intellectually I have grown and improved in many ways. Physically...it's been bad. Better than the reverse, I'd say. But I an optimistic person and can usually find something good, or at least funny, in every situation.it has taken my wife, lots of time with my children, my energy, my social life, my hope.
i got in return a pokey appartment and lots of solitude. constant pain, empty meds bottles where holiday photo's should be, medical bills that are double my annual salary, i could go on but we all know the sh*t we get from this disease.
mmm its taken my ability to just GO. I miss getting in the car any time I want and going anyplace I want. I have to plan trips and wait for "good"days when I'm not "too tired" to drive.
Its taken my ability to scramble around the hills picking blackberries. I cant scramble, and I'm terrified of falling.
So many times its taken my sense of humor and fun.
But its given me a sharp awareness of how important I am to my kids, and how important it is to give them as much atention as I can. Its made me aware of how easy it would be to say, "not now" but I dont. They get the best parts of me.
Its given me a heightened sense of how much it matters to enjoy my life. ALL parts of it, and every day of it.
RA has taken away my energy. My job demands long hours and a lot of public meetings and appearances at many functions. I really don't have the endurance I had even two years ago.
RA has given me a new perspective as far as slowing down to a more manageable pace; the ability to say no to taking on a new project; and an awareness of how bad things can get when I don't take care of myself.
Hiking_gal
we all know all the negatives and we all know i have them... ha
positives. I have learned silly things that you think you have to do are not important like Christmas decorations, cleaning the house,etc. I have learned to listen to my body. I have learned it is o'k to say NO. I enjoy being with somebody when I feel well. I enjoy the sunshine. Simple pleasures mean so much more like talking on the phone, getting outside, eating ;-) My husband who takes on more everyday without saying a word. My doggie who just loves me no matter what! Sweat suits. Not getting dressed all day. Appreciating a day when I feel half way normal :-) laughing at what healthy people think is important!!!
RA has given me the motivation to take the best care of my health that I can, eat well, exercise, etc.
As for what it's taken, quite a bit, and I don't want to focus on that now...because I don't have the tears to spare by writing anything negative or positive about this disease either of which would make me cry..... I just want to commiserate w/ you all...
and say that positively? Positively, I know HATE RA.
Taken from me?
Nothing. I don't let this disease take anything from me.
Maybe since I have had it all my life I don’t know any better. But, I don’t let it take anything. I have done everything I have ever wanted to do. I just push through it. Whether it’s getting up to teach in the morning or go work out. I get through it.
I wanted to be a majorette in high school. Even with my deformed swollen hands I still did it. I got up in the morning and I couldn’t move my fingers an inch but I pushed through not missing one practice or one game.
That is just one example of course.
I know most of you will disagree (because there are extenuating circumstances) but I don’t think we should let it take anything from us.
Given me...
Strength. Strength to know I can do much more than the average person. I know what I have been through and really nobody else around me does. I don’t tell people that I have RA. I don’t talk about it at all. (Except on here that is and I don’t really even type that much) I like that feeling. It gives me confidence to know I can do just about anything I put my mind to. I know this may sound goofy to most of you, but I am proud of myself.
Well this question is hard.....
When I was first diagnosised I was angry and frustrated and hated the world.. Why me GOD!!!!
But 13 years later I see things much differently.
I do have my limitation but when I here people say I had to run after and catch my friend, son, kid. etc. WHAT!!! I wish I could run after someone I would be in heaven OR they say I had to get down on the floor and reach my childs toy. DO YOU KNOW HOW I WISH I COULD GET DOWN ON THE FLOOR WITH OUT A CHAIR FOR ASSISTANCE.................
I could complain and say all the things this disease has taken from me, but the truth of the matter is. I am not in a wheelchair, my brain works correctly. "Well sometimes." Hee...
So for me I am truly, truly blessed....
RA Dx. 1996
Orencia, Prednisone, MTX, Folic Acid
Honestly, some of the positive replies are annoying.. LOL sorry..
I guess we all have various degrees and some have high pain tolerances.
I don't!
Its taken wayyy too much, from me. It frustrates me constantly. I finally thought i could go look at the horses and new foals, down the road.. just a simple 4 block trip.. RT.. no biggie.
I loved seeing the new foals, it was great. I felt fine, went slow... but.. But.. the next couple days after, my knee was totally Effed up,, bad!
I hate the RA flu, taking tons of vit c and i mean like 5,000~10,000 mg helps.
The exhaustion..its just frustrating..
What its given me? .. well it Hasn't taken my sense of humor!!1 lol
I appreciate more, what good health really is. Lets see, I've found new tv shows to watch,
When it hurts , it HURTS and when it limits your life, ....
ohh yeah, i now get vicodin and i'm used to a certain amt of pain, all the time..
i'm sooo cheery tonight! :P
"Hi LinB, the main aim of this thread is to help us realise that while there are many negatives associated with our disease, there are also many positives"
Janie, my post is positive, it's how I look at RA. I don't let RA take anything away from me. If RA takes something from me then I substitute something else for what it's taken. I learn something new by taking a class, teaching myself, or learning from a friend. I refuse to allow RA/PsA to change my life except for the better.
Have I always felt like this, NO. When I was bedridden and couldn't walk due to the inflammation and swelling I didn't feel like this but slowly I developed a sense of acceptance. This in turn lead to adjusting my life to accomadate the disease. Now that I'm in clinical remission I have much of my other life back. Since I developed other skills and hobbies to replace some of the things I lost, there aren't enough hours in the day to do everything that I want. I can't use very small beads in my jewelry making so I use much larger beads and have some brand new designs. I can't paint in small detail any longer and I'm now doing abstracts on large canvas. I can't golf 18 holes like before RA but I can golf 9, sometimes I can only do 6 but I do it. I had to quit work because of RA. That was a blessing in disguise. It was the first time in 40 years that I hadn't worked and could stay home and take care of myself. Instead of working outside the home I took my love of painting and I started to paint furniture and sold the pieces in several galleries. These are the things that RA has given me.
Yes, I still have pain from damage, still pace myself, have pulmonary and cardiac complications from RA and in spite of the disease I'm living the life I've always dreamed of living. I guess you could say the same of my friend with stage 4 breast cancer because she's here in Mexico with us and enjoying life to the fullest.
RA has given me the mental strength to fight the disease and it's complications and to be stubborn about the journey to clinical remission.
If someone had asked me to post on this thread 5 years ago I might have given a much different answer but I answered from the place that I'm in presently and it's taken me 5 years to get there. I certainly didn't mean to belittle anyone's disease level. My answer was probably too short and without enough explanation. Thanks for pointing out what I left out of my original post. Lindy
Well said LinB.
Some people may think that thinking postively is annoying, but it is my way to cope. There is no use in thinking negatively. It gets you no where. It only makes things worse. I will continue to be postitve because it works for me. Things could always be worse.
RA hasn't taken anything away from me. I do everything I did before...I just do them a little slower sometimes
We obviously all have different things that we find difficult about this disease, there are no wrong and right feelings about how it affects us. Some of us are racked with pain day in and day out, no meds help and due to this marriages break down , jobs are lost and life looks very bleak, it all seems too much to bear some days. Some of us have days where we flare , sometimes the flares last a few months but we have enough good days to out weigh the bad and we can cope with it all, we also have husbands/ partners who do not leave us and friends who stand by us. The meds give relief and life is quite normal.
Its easy to be upbeat and positive about life when we are like the latter, its very difficult to feel positive about RA when its taken all we cared about in life and causing constant pain.
I know when Im in pain for weeks at a time, I get really down and depressed and nothing will make me feel positive. When i get through it and i feel better, I could climb mountains and wonder why I felt so depressed....its like a see saw.
To everyone who has the constant pain and swelling and who have lost a lot in life through RA dont feel guilty for feeling like you do, maybe see someone who can help you cope , join a support group, come on here and vent, scream or just get some advice from those like you who have found some peace. Dont let it rob you of life, make changes, but be kind to yourself and find something that suits what you can manage to do. Even if its getting up out of bed, sitting in the garden or the park and enjoying the surroundings....
It has taken away a lot. I used to compete in racquetball, and teach kids how to play. Forget competing, forget teaching, I try to get on the court once every couple of weeks to just hit the ball. I do it for my mental health, but I end up in pain for a week. Is it worth it? Not sure.
It has taken away being spontaneous. It has taken away the ability to "do things" like last mintue trips on a boat out in the ocean with friends. I have to consider the pain involved with the waves smashing down. I can't fish anymore, which I love, cause I can't hold the rod tight enough let alone reel in a fish. I may be able to go on "rafting parties", but I'm stuck on one boat cause I can't jump from one to the other. It's taken away the sun, cause it makes me sick now.
It's taken away my happy go lucky attitude, walks on the beach, time out with my friends and a perfectly chilled martini or a nice glass of wine. It's taken away my desire to go out and party or go out to dinner with friends and dance.
I could go on and on but it's depressing.
What has it given me? A constant sense of being tired. I push through work for 4 days because I love it. What it gives me in the end is a weekend where I have to take at least one if not two days and stay in bed. Nice life.
[QUOTE=SnowOwl]Nobody's saying a person must be a Pollyanna. And having a support structure doesn't always make it possible to always be positive. Bad enough to have any medical condition without people looking on with their "shoulda, coulda, woulda" advice and admonitions. If I've offended anyone by trying to be positive, I am sorry. I'm in a flare and I'm frankly a little scared and I'm trying to remain positive. I'll just do that on the other side of the monitor and not here.[/QUOTE]
Don't listen to the naysayers....I think being positive is a good thing. I understand feeling down and being in pain. I'm not oblivious to that at all..
I spent 8 years waiting for some relief from the pain and damage I was suffering, but I refused then and I refuse now to let RA control my life. I'm not a victim and I have power over a lot in my life, most importantly my attitude toward how I'm feeling............
A long time ago, a friend sent me this. I've found it helpful.
| Acceptance of an Illness is Not a Surrender |
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Vijai P. Sharma, Ph.D
Replace negative thoughts with acceptance thoughts such as, "I don't like being sick, but I can live with it." We wrongly fear that acceptance of our illness amounts to surrendering to it. Acceptance does not mean that we have given up fighting or that we are inviting the illness to stick with us for ever. On the contrary, when you accept your illness, it frees your powers to work on recovery and rehabilitation that were earlier being used to protest and fight against the disease. An acceptance of the disease may even release the powers that were dormant which you had no idea you had. It is the the freed up powers and the dormant powers that enable a person to "ride the tiger."
What we regard as limitations and restrictions caused by an illness may lie, to a great extent, in our belief system, rather than in our body. Our beliefs create our reality, and the mind and body take that to be the truth without further questioning. We act as if that is true. Our actions provide confirmation of our beliefs. Take for example a man with a severe heart condition who is unable to hold down the job he had previously handled for years. Physical tasks, such as chopping the wood in the winter or tilling the yard in spring have become not only arduous, but tortuous. In addition to this his sexual drive plummets to zero. He begins to think about himself in such terms as, "I am not a man anymore," which then results in chronic depression.
The man in the above example now has depression to deal with, in addition to his heart condition. Such a man is heading for total disability. However, if he alters his belief about himself by affirming, "I am not able to do some things just now, but I am going to build from ground up and do what I can." In this way he may be able to ride that proverbial tiger, called long-term or life-long illness.
Accept that you are 100% responsible for what happens to you. Freeze the blame at point zero. However, accept help from others with a gracious "thank you." You don't have to do it alone. Give others a chance to help you. Learn practical tips on how to manage your symptoms and emotions on a daily basis. Grow a plant. Marvel at a sunset. Such enjoyments are offered to all of us by Mother Nature free of charge. Seek out things that you can enjoy. Find your "heroes," that is, people who are coping successfully from disabling and painful conditions. Appreciate your assets and realize that it could be worse. Look at those with compassion who have it worse than you and look for opportunities to help them cope with their illness.
Lack of acceptance leads to out of control emotions. Some people who are chronically ill begin to take their anger out on their spouse and children. In many cases, it is men who refuse to accept help for their out-of-control emotions. Their spouses are compelled to seek help for themselves so that they can somehow cope with the situation at home. It is unfortunate that for some, accepting help equals defeat. For some medical patients who are going through an emotional turmoil, the suggestion of psychological help amounts to adding insult to injury. A physician is hard put to recommend psychological help lest it should offend the patient. Perhaps, patients in such a situation feel that the control of their body is already taken away from them by their illness, and "now my doctor is telling me that I have also lost my mind."
Unfortunately, many of us still view psychological help as a threat rather than a help. According to them, psychological help is only for the people who are losing their mind or are already "crazy." A lady who was losing her sight due to diabetic complications was having a difficult time in dealing with the fact that she was at the verge of total blindness. She became severely anxious, depressed, and angry. She didn't care whether she lived or died. She overdosed on her medication. At this point her doctor recommended psychological help. The lady declined the suggestion saying, "I am almost blind but I am not crazy."
This lady was having nightmares which consisted of getting lost, stumbling in the dark and being mugged and beaten up on the street. She didn't want to get out of her house or go to a store even with an escort. She was afraid of stumbling over something and falling down, and thus "make a fool of myself." She was obsessed that her escort would make a mistake in navigating her or not support her firmly enough to help her walk steadily. These are all very normal concerns when a person must make a major shift from a "seeing" person to a "sensing" person--from being self-reliant to other-dependent. However, the dependence on others may be only a temporary phase. When you accept help from others, you can concentrate your powers in learning how to use other senses and resources. Agrippa in 1510 said, "So great a power is there of the soul upon the body, that whichever way the soul imagines and dreams that it goes, thither doth it lead the body."
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Glad I could be of some help
RA has taken nothing from me... I am with some of you on this one. When I was diagnosed, all I saw was my latest challenge.... Yes, there is near-constant pain but I do not let it get me down. I just push forward and do what I've always done. I coach my kids in Baseball, Volleyball and Soccer. I take them to band concerts, choir concerts, school events, to the zoo. I work 50-70 hours/week... My wife thinks that I am in denial and maybe I am. But I am who I am and I don't know how to be any other way.... I do have my moments of doubt, when I wonder whether I can really do this. But, I've always been an extremely confident man, so I snap out of it and push on. Again, it's what works for me. I have learned that RA comes in many flavors and colors and so do our approaches, abilities and personalities. There is no one way or a good or bad way. You are who you are and you will act accordingly. We all have our ups and downs. We come here to share them. No?...
My mother once told me that having RA will either make me bitter or better... She looks me in the eye every so often and tells me "I don't see bitter..."
Be well, everyone...
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