Acceptance

By PamelaO Thursday, December 03, 2009

- A
- A
- A

Hello everyone and thank you for taking the time to read this post! I am living with RA. I was diagnosed this past February but had been dealing with the mystery illness for 4 years prior. Like many of you, I was given the diagnosis of Fibromyalgia. I knew this was wrong. In fact, I diagnosed myself with RA 4 years ago. My father, being an Internist, tells me I am like a first year Medical student. Researching every symptom. But, By George I got it! My Reumatologist did not.

Dealing with the diagnosis let alone all of the symptoms has been a game of cat and mouse. I have been trying to figure out desperately what is triggering my flares. I have not been able to come up with an answer that makes sense. There have also been the pitty parties I have thrown myself as I laid in bed all summer long with knees too swollen to stand on. To make matters worse, I am an artist. I have a creative mind and need to constantly be doing someting creative or I am flat. It is like oxygen to me. Sounds crazy? I know, but its true. I have been a painter since the age of 8 when I began art lessons at our local Museum. I was hooked. Many lears later I recieved my Bachelor of Fine Arts degree. Began selling my work immediately. Besides being a mom, these were the best years of my life. Gallery exhibitions, wine, cheese, and contacts. Four years ago that changed. Not being able to hold a paint brush or raise my arms. This was during my flares of coarse which occured every 5 months or so. Now after yet another flare and a proper diagnosis from a new Rheumatologist, my RA is finally under control. For now. But how do I get my life back?

This year, mostly under the RA attack, has been miserable. I have lived in fear preventing me from reaching my goals in life. My dreams of making the history books as a contributor to 21c art. Now I know this dream may be a bit out of my reach, but its the only way I ever knew. To be the best. I want that desire back more than anything. And I will get it.

My new focus on life is me. I will no linger get bullied around my my illness. I will not live in fear. I guess I have finally accepted this burdon. It will not control my thoughts, but I will. RA is just hanging around for the ride. It will be with me always. It will not leave. So it is time to adapt. Having an unwelcome house guest is not fun. But thinking about it all of the time is worse. I, at the age of 39 will begin a new chapter of my life. To not live in fear of the unknown, and to smile a lot more. And while I'm at it, paint again!

Bets to all of you and have a Great Holiday!, Pamela

Nervous about Humira

Comments (11) | Add comment

Anonymous

12/ 3/09 6:15pm

Unlike you, I was diagnosed with RA in 2002 and it does take your life away. I have grandchildren who have no idea of the person I really am, because I have not been able to run and play with them. Depression is hard not to fall into-all RA suffers do from time to time-I guess what keeps me going is knowing that it can always be worse. I hope to be back on Somponi before long-it did work wonders for me and allowed me to be normal. Keep your chin up and don't give in to RA-your outlet is art-enjoy it always and good luck with RA.

PamelaO

12/ 4/09 6:54am

I understand your pain. I have a 17yr old and had a very difficult time getting into the football stands to watch him. This is his junior year, he is a starter finally and I couldn't climb to my seat. Now that I am starting to feel normal, people are telling me how great I look. It's amazing how pain drains you of your appearance. And the depression takes it's toll also. Enjoy those grandbabies as much as you can. They will remember your smile. Take care and gook luck also with your RA, Pamela

bucko27

12/ 4/09 3:32pm

Pamela- Your post was quite inspirational and for that I thank you. My motto is "Better days lie ahead". I truly believe this no matter how hard it gets. The bad times only make the good times sweeter. You did not mention if you are taking any medications. I have been taking Enbrel since 2001 and it has really made a difference for me. Exercise also helps but have been neglecting that of late. Keep the old chin up. I like your new attitude! You ARE #1!

Steve

PamelaO

12/ 5/09 7:49am

Thank you Steve. Other than taking my meds everyday, I do not think about it too much anymore. I mean, don't get me wrong, taking meds is enough to remind you, but I have been too busy otherwise. I guess that is a good thing. I am currently taking Methotrexate 20mg wk, prednisone 2.5mg daily, mobic daily and a few others. I know that these meds have contributed to my feeling better, but sometimes I get tired of popping pills. I completely agree with your idea that bad times only make the good times sweeter. That couldn't be more true, especially with RA. Take care and good luck with your RA. I am glad Enbrel is working., Sincerely, Pamela

Kelly Young

12/ 4/09 7:19pm

I love the way you put it. I hope your next chapter is easier and next year is better than this one. Much is said about<a href="http://rawarrior.com/2009/07/me-before-rheuamatoid-arthritis/"> the old me thing.</a> Each time we think that we've dealth with the loss completely, there is another loss... The only way to keep going is to do what you are doing: keep getting back in. Keep fighting. Thanks for encouraging others along the way!

Kelly

http://rawarrior.com

Kelly Young

12/ 4/09 7:22pm

Oops my link is broken: The Me Before Rheumatoid Arthritis

and I forgot my smilie anyway!

PamelaO

12/ 5/09 7:58am

Well Kelly, that is my plan. To keep fighting and plugging away. I will be reviewing your post also. It sometimes is hard to believe that we once had a life so different than the one RA has handed out. I am desperate to reconnect with my not so distant past no matter what. I have suffered enough. Now its my time to start smilin! Good luck with your RA and I am glad my post helped encourage you. It is your time now, Sincerely, Pamela

Ratnapriya

12/ 6/09 11:46pm

Pamela RA robs from us a lot. But if you visit this site regularly you will find that it has not robbed people of their fighting spirit. It is that which helps them living a full life with some adjustments. You have that spirit. Do not give up on your dreams not yet. Just postpone it for good days. All RA people learn to make maximum use of their good days and that is what keeps them kicking. I am sure we will soon see you achieving your dreams.

Ratnapriya

PamelaO

12/ 7/09 6:13am

Thank You for your insight! Yes I do agree many of our RAfriends are strong peolple. This is why I visit this site often. Also, thank all of you for the support you have given me. When I get down I will review these comments to remind myself of what we all share and that I am not alone. You give me inspiration!! Thanks, Pamela

Alexandra

12/ 8/09 12:19am

Hi Pamela,

I'm new to this site, but not new to arthritis. I'm 27 and have had arthritis for almost 24 years. I have JRA (juvenile rheumatoid arthritis).

Your post struck me for it's combination of hope, frustration, and perspective. Like you I'm an artist too. I'm a singer.....which is comical considering that my jaw never fully developed, my shoulders curl in slightly making it hard for my lungs to consistently contract properly to support the upper register of my voice. This past weekend I sang Rutter's Gloria with my chorus and a phillharmonic. We had three performances.

I had to stand for about 40 minutes straight. No easy feet when I've had arthritis in my knees since I was three and in my ankles since I was ten. I also broke my right leg two years ago. I have two screws in my right tibial plataeu. The first performance I choose the more appropriate looking shoes. At the end we had to get back on stage to sing Hallelujah from the Messiah....I put my crock flip flops on (even though my dress socks were mismatching)...but they have great arch support and massaging knubs. Concert #2 I just wore the crock flip flops the whole time with black dress socks. Concert #3 I put an ankle brace on my right ankle, the weaker one, and put the dress socks over the brace, and slid my feet into the crock flip flops and sang my heart out.

Living with a chronic illness takes creativity and perservance. I'm sorry to hear that RA has inhibited your ability to make art. If only for your mind, do as much as you can and as often as you can. Make art! Forgive yourself for it may not meeting your high artistic standards everytime. In the long run your hands will thank you for the exercise. As a child, my Mother made me color and draw to keep my hands from becoming stiff. I'm grateful....I have some cute drawings and paintings from my childhood. My Mom also encouraged me to take piano or learn guitar as a child, but I was scared.....scared of hurting my hands.

I regret that now. Now I'm taking piano to bring greater rhythmical precision to my singing. I sang for twelve years and took a four year hiatus because my Dad said, "You are talented, but who else is more talented? And does that come with health insurance?" Recently I left my day job to go back to school to obtain business pre-reqs to apply to a health care management/mba program. I will own and operate my own health center in the near future. In the midst of that transistion I found my way back to singing. :) Never leave what you love to do. We're all here for a purpose. I look forward to you sharing your art and blessings with the world. Do you have a website displaying your work?

-Alexandra

PamelaO

12/10/09 6:01am

Wow, that is impressive! I am glad to hear you are still performing. I think I had Juvenille RA when I was about 3 yrs old. I was taken to a Rheumatologist at that time. There were no answer because all of my lab work was normal. Here I am many years later with RA and still normal labs. I have sero-negative RA. I am grateful I went into remission all of those years. My symptoms started un again in my 20's with my toes then remission again until about 4 years ago. Now it is here to stay. I am taking Methotrexate 20mg week and prednisone 2.5mg and mobic which seem to have holted my symptoms. I feel pretty good and almost pain free.

Now, getting back to your singing, it is truely amazing. Whatever drives us is difficult when faced with RA. Especially the arts. And of all the things to inherit. I tell myself that all of the time when trying to find a job where they need fine artists. I know it is for a purpose though. I, just like you need to continue to plug away. Right now I am sewing dresses for christmas gifts for my nieces. I have hand-made all of my gifts so far. This way everyone gets something special. It is not painting but allows me to create something unique while using my fingers and my mind. Maybe I do need to put less pressure on myself and consider these projects a path to recovery. Although my easel is calling me. I did have a website displaying my wall painting and interior design but I had to let it go. Could not keep up with the physical demands of the job or the website upkeep. I will begin to rebuild my portfolio soon in hopes for another solo exhibition. This may take a while but I will exjoy the process thoroughly.

Best of luck with your singing career and keep writing. Your story has inspired me and given me hope.

Sincerely, Pamela

Acceptance

Ask a Question