I don't manage it. I rail against it like the oncoming night, making everyone miserable around me.

Actually, as a former project manager, I lean on my training. I access the setbacks (pain, brain fog, more doctor's appointments, accounting for additional pills and when to take them and their impacts, financial constraints, physical restrictions, etc.), rearrange priorities (what I can do, what I want to do, and what needs to be done, each in their proper order), take stock of my resources to alleviate RA's insidious advances (medications, diet, human support, movement, etc.), and create a new timeline for getting done the things that are prioritized. Fuck you, RA.

I feel great frustration at times. When I can’t do things that I used to, the way I used to, I become frustrated but determined. I think, if I can’t do it that way anymore then I’ll find another way. If I feel myself getting worse, I bug the mess out of every single one of my doctors until someone gives me good advice or helps with my meds.
I keep telling myself that I refuse to let this disease and my others direct my life.
I’m determined to lose weight even though I can barely walk a mile. I push myself to walk at least 2 most days of the week.
I forced myself to begin eating differently.
I find muscle strengthening exercises that I can do, even if I have to do them without weights and I can only do 1-5.
The biggest thing I do to help myself is tell people when I can’t do certain things. I ask people if they wouldn’t mind doing something else or I ask if I can just go with them but sit somewhere while they exercise. While I wait, I’ll get up and slowly walk around or I will do slow and easy leg raises and arm raises - something, anything to stay active.
I love vicariously through those who can do the things I want to do. Even if all I can do is listen to their adventures, I realize it still makes me happy to see and hear their excitement and to see the pictures that they take for me.
It is definitely frustrating, but I know there is help. I just keep pushing literally one step at a time.
We’ve got this!
Be well!
Cheers!

Any Chronic disease is a robber of what we all love to do. I lost my ability to be useful
and that alone can make anyone depressed. I had employment with the FBI Boston
Office and tried to act normal, even taking a strong pain killer so I could walk and do
light jogging. But when the pain killer wore off my feet felt like they were broken.
So I became depressed and stress out and yelled at my boss and resigned when I
hoped to be of use to my country. I just couldn't walk and the pain and frustration
drove me crazy. This RA is viscous and invisible to healthy people. They don't
understand what it does to the body and the mind. It's like being physically tortured
for information you don't know yourself. I lost my ability to ride a motorcycle, to play
guitar, to do any physical exercises as I watched my joints deteriorated. My first
joint implant was on my left shoulder in 1978. Nine more came over the years:
left knee, right shoulder, left hip, left ankle, right elbow, a right wrist fusion, and my
feet. It's been an experience I wouldn't wish on an enemy. There's no cure for RA.
But what we lose physically makes us learn to endure; even over a lifetime. I don't
mean to vent and make anyone depressed because you've got to keep going and
find substitutes for your loss. RA's a mind game only you can defeat. There's always
going to be pain and swelling and deformities but you must not give up even though
it's a lonely fight. Listen to music, read poetry, write poetry, write out anything to
vent, So I can't play guitar anymore, okay, I'll play a harmonica. Walk when you can,
even around the house, yell, sing, pray. Do what you've got to to shift your thoughts
away from the RA. Stay strong RAers, Keep going. best wishes for all of you.

It's not a loss , it is a brand new life . If you spent anytime at all at the doctors office or a hospital there are some very ill people with horrible medical issues . RA looks like a joke compared to other illnesses. The new bio meds will get you close to a normal life and you will find ways although differently to get the job done . Years ago you might have ended up in a nursing home with RA if you didn't have someone to take care of you .. That has changed so if your still feeling that bad your doctor has just not got you there yet. No one and I mean no one that doesn't have RA can understand your illness so please don't expect them to . So get your RA under control because you can't undo the damage , surgery's help but nothing beats your original parts . Although it is hard find a way to be positive it helps not only your mind it helps your soul . Listen to your body , if it needs a nap take one ... Eat good , find the trigger foods and take them out of your diet . If you look at RA as a loss you most likely are going to stay ill and there is no need for that .. Yes at first , it is very hard you now have a different life and people are watching you . Are you a fighter or are you going to stay in bed and give up . That is why I call everyone in this group my RA Warriors because you are .

Good morning Nancy,

Great question. In the beginning, I frequently had pain and couldn't understand why. Here I am a person who has led a healthy lifestyle and exercised regularly. This pain was very different than the pain you normally experience with weight training. Weight training pain is usually in the form of soreness. This new pain was in the form of throbbing constant pain which I felt in my bones, and joints. Hot pain, swelling pain. My quality of life without pain did not exist anymore. I continued to exercise, but I had to cut down on my weight training and a good amount of the physical activity I usually completed without thinking too much about it. If I wanted to go hiking, I had to consider whether it was worth the pain, going to one of the outdoor outlet malls shopping with my daughter (4 to 5 hours of shopping) was painful.

The worst part of my journey was the doctors who would not listen to my expressed symptoms or would brush me off and say it was regular arthritis. My toes were curling on me at the second joint, and my knuckles were becoming enlarged and painful. I felt these Rheumatologists were not interested in my symptoms; I then came across the Seronegative patients who were experiencing RA symptoms as well. After 4 Rheumatologists, I finally found one who would listen and work with me on relieving the pain and stiffness.

For me, the loss of being fully active in my family's life, and fully able to complete physical activity were difficult mentally. I think we eventually come to terms with our limitations, but sometimes we need help reaching this point mentally. The help could come in the form of talking to a therapist, taking antidepressants, or discussing this topic with others who are afflicted with the same disease and understand this difficult journey. I agree we experience grief and the loss of who we once were. The changes in our lives can be very drastic.