Is it just me or do any of you ever feel like Ra has stolen time from your life? I do. I began college when I was 17 and I had to leave two semesters later because the pain from RA was just too severe for me to concentrate. Now here I am at 22, in remission, and ready to move forward with my life. I've been fighting this disease for about 8 years now, only a year in a half have I been diagnosed and treated. I feel like I've lost the past two or three years of my life. I've done nothing, I've accomplished nothing. Now here I am in remission, a day I've been praying for for years, and this might sound crazy but I feel scared to move forward. I get scared I'm gonna wake up one morning in the excruciating pain I used to be in. Maybe I'm kinda OCD but the first thing I do in the mornings is check to see if my pain is back. I get scared Humira is going to stop working for me. My life feels amazing to me right now. I feel 22! It's the most incredibly empowering feeling just to feel 22. I'm so thankful for being in remission yet I feel like I'm being ungrateful because I get scared to keep going and pushing myself towards fulfilling my own dreams. When my RA wasn't treated I felt like I was the living dead. For the last 2 in a half, three years or so I've been very antisocial and just been focusing on me and my health. I've lost alot of contacts and had to burn a few bridges but I did it to take care of me. Now I feel ready to get back out there but it's almost as if I've lost social skills..If that makes sense at all?!?! I feel very isolated in my life right now. I want to get back into the "Land of the living." I wanna work, I wanna graduate from college..Maybe even get married and have a baby one day. This sounds so lame but fear of my RA is holding me back. I get scared not knowing what the future holds for me...I feel like I'm ranting lol...I guess I need some words of encouragement from people who I'm sure can somewhat identify with me.
This sounds so lame but fear of my RA is holding me back. I get scared not knowing what the future holds for me.
NO ONE KNOWS WHAT THE FUTURE HOLDS!!!
OH My Dearest Jeanne, can I relate. Yes. Being a 20+ year veteran of the heartaches and breaks of RA, I know what it is like to go into remission and see a light at the end of the tunnel but afraid you won't be able to get to the end.
I can only say, go ahead and go for your goals like you did when your were 17 (truthfull, you should never have stopped.) Only one thing has changed. You can no longer take ease of motion for granted!! Teenagers believe they are going to be healthy and live forever. People in general take the smallest tasks for granted (tying shoes, brushing teeth.) When you have RA, nothing can be taken for granted. And as much pain as we are in, we pray for thanks that we even wake up every morning because we know all to well that RA is capable of taking many things from us, including our lives.
We do not know how long our remissions last. Months maybe years. Think of it as having put your RA in a backpack that you carry with you everywhere no matter what. So enjoy the time you have to run around and act a fool, Dance! Sing! Shout it from the mountain tops! Just remember what it is in the backpack and don't forget to look in it every once in a while. Rest when you need to rest. And by all means keep yourself healthy and build a little muscle while you can.
Socializing will come back to you. That too should never have left.
RA doesn't have to take our whole lives away from us we can still go to school and get degrees with RA. It takes a while for us to figure out how to do it with minimal pain, but we can adapt. We can get married and have babies just like anyone else can. Saying of course if we can find someone willing to put up with our bitchiness during flare ups.. LOL
WE ARE NOT OUR DISEASE, IT IS MERELY A PART OF US.
RA does not have control over our minds, our spirit, our desires! If we can learn different ways of washing our hair that is not as painful, the we can learn to be okay with ourselves and live fulfilled lives, in remission or not.
"There is nothing to fear except fear itself"
And fearless does not mean wreckless.
Things I have done after diagnose whether in remission or not whether in pain or not:
Bought and learned to ride a motorcycle
Went to Rome, Italy.
Have traveled through many states in this country and Mexico.
Gotten married and divorced
Helped build 40 buildings in Houston and Altlanta as a certified welder.
Worked as a mobile mechanic for AAA for 5 years (yes in a tow truck).
Volunteered at the Astrodome after Hurricane Katrina.
Have everything I need except 2 credits to receive my degree in psychology.
Have dedicated many hours as a youth councelor.
I have learned to walk with crutches (the kind that wrap around your forearms)
I have learned to manuever a wheelchair.
More than anything, I have been a willing participant in my own life.
Fly, be free young butterfly. So the world you are not fragile and will not break.
Roie