A week ago today, Rheumatoid Arthritis Guy spent an hour talking with an absolutely wonderful woman. Even though she and I are years apart in age, we do share one very important thing in common – and this is what bought us together for a visit on that sunny afternoon.
Both she and I live with rheumatoid arthritis.
What made my visit even more special was the fact that – for the first time in my life – I was sitting down face to face with another person so that both of us could share our stories about living with rheumatoid arthritis.
To be honest, I took me a while to build up the nerve to go through the visit. Oh, it had nothing to do with her. It was all me. By meeting another person who has spent a lifetime living with rheumatoid arthritis, the rheumatoid arthritis that I was actually struggling to confront was my own, and not hers.
Was it okay for me to cry if I felt the need to?
How was I going to react to any visible deformities?
Am I really doing the right thing?
These and many other thoughts raced through my head in the days leading up to our visit.
Just a few minutes into our conversation, all of my fears were put to rest. In front of me I had this incredibly strong woman who has been living with rheumatoid arthritis for almost three decades. And while her body showed visible signs of her long struggle with rheumatoid arthritis and osteoarthritis, her person radiated nothing but strength.
This physically fit thirty-something guy couldn’t help but look up to this feeble lady with anything other than amazement.
Her first words were “the pain – get used to it. Learn to accept it, and make it part of your life, because it’s not going away.” Her statement was not the least bit cruel. Instead, she spoke with wisdom and experience. As I have only recently begun to accept (again) the chronic nature of RA pain, I really appreciated her advice.
She then proceeded to show me her hands. The wrists were permanently swollen and out of place, as were the knuckles. One pinky finger is scheduled for an upcoming joint replacement. These hands were a true testament to time, and they were beautiful. She had no shame whatsoever as she held out her hands so that I may inspect them. (I silently kicked myself for even worrying how I might react when I saw her hands.) If only everyone could be so proud.
We traded stories of different medical treatments and their sometimes horrible side-effects. She could not handle Arava, but is on methotrexate. I could not handle methotrexate, but am on Arava. We swapped homemade remedies for protecting our stomachs, and shared information about nutritional supplements.
She pulled a large tube of Aspercreme out of her purse, and gave it to me as a gift. Little did she know that just a week before, my sister had sent me a box of arthritis products and orthopedic aids via international courier – but the large tube of Asprecreme that was originally included in this package had to be removed due to customs regulations. Somehow, a tube of Aspercreme still managed to find its way into my hands.
We wrapped up our visit by talking about the importance of continuing to carry out activities that bring pleasure to one’s life; that by spending time on something we enjoy it is possible to temporarily get our mind off the pain and disability. In her case, knitting has become too painful but weekly bridge is something she continues with a vengeance.
As I walked home that afternoon, I couldn’t help but think back to some arthritis forum messages that I had recently read online. Some women, who have lived with rheumatoid arthritis for twenty or thirty plus years, voiced their concerns about openly discussing their experiences of living with rheumatoid arthritis in front of us “newbies”. They thought that by sharing the details of their lives with RA, they might scare those of us who have only recently started on this journey.
To all those women who have lived a lifetime with RA, please let me say that when I hear your words and your stories, I am inspired by your lives and by your strength. Please do not think that you are scaring me. During some of my most difficult flares this past month (which have been some of the toughest moments yet), messages and posts from people who have lived with RA for decades have flashed through my mind – and I often find myself thinking: If they can get through this, so can I!
Thank you for the inspiration.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
This post made me cry..you expressed this so well. I could have been the woman in the story. You may ask me anything at all now that I know it will really not scare you. However, remember this..you young people have the advantage of having many, many new treatments that were not available years ago. Also the power of the Internet to learn and share.
By the way, where do you live? I’m new to your blog.
My biggest fear when diagnosed was deformities. That was five years ago. Now, it is still something I don’t hope for, but like you it is something I can now appreciate and see beauty in. What a lovely experience for you to meet this lady.
The first face to face RA gal I met with was set up by my naturopath. This was only last year. She is also a mom trying to work through this alternatively. I was really nervous meeting her. She had RA for ten years and it showed. However, she was beautiful and we couldn’t stop talking. I cried just having her listen to my stories and truly understand. Thanks for sharing your story.
OMG…this made me cry too. Your writing was wonderful and I bet she will be touched when she hears your side of the visit with her.
I, too, can relate to both having RA and being younger like yourself and appreciating the people who have lived with it for so many years. I look up to them for their courage and strength.
Another great post RA guy…I think I have said that a time or too. Keep it up.
It’s amazing how beneficial it can be to talk to someone who’s been there and managed to stay positive. A friend urged me to contact someone she knew had RA; after months, finally I phoned the guy at his office (hi. you don’t know me but x suggested I call you). Although he’s incredibly busy, he took my call and graciously answered my newbie questions. To this day I think of him and it helps to know he’s always available.
I suppose I have had the benefit of watching my mother deal with this disease. I guess because of that I have always known that I will survive this. I agree with Linda, the damaging effects of this disease on someone (like my mother) 20-30 years older than I am are because there was not the medical treatments that we have today. It is hard to completely understand if you haven’t witnessed on lived it but before DMARDs and TNFs and the like aspirin was the drug of choice and it did not protect against joint damage. Its like trying to compare apples and oranges as far as treatment options are concerned.
Lately when I read your posts I just want to give you a hug. You sound like you need one.
RA guy….I love you!!!!! So Happy I found your amazing site. Thank you for sharing your thoughts, feelings and issues on RA. Your latest Wonder Woman post made me cry. I have lived with RA for 30 years and most of it in isolation. Have learned to not express feelings or complain….which can be a lonely! People…even family/friends don’t really understand or care. It’s been so wonderful to find a network of RA friends on-line. Thank you again! Bless you!
What a wonderful touching story. You both are definitely blessed for having this experience. I also have had RA for the last 30 years and find that what your new friend said to be so true to the heart. You really do need to find a way to make the every day parts of RA not prevent you from doing what you love. My last year was rather difficult for me. And I love to knit. So everyday, I knitted, even if it was just one row or a few stitches. It took almost a year, but I finished my afghan. It was a great joy to finish and was a big accomplishment in many ways.
Keep being inspired! It makes the good days that much better!
I wonder, as far as joint deformity in the fingers…has anyone suggested silver ring splints to you?
http://www.silverringsplint.com/
I have a full set of them, to prevent further damage to my finger and thumb joints.
~Kali
Another inspirational post by fabulous RA Guy.