Rheumatoid Arthritis Guy woke up this morning feeling much less pain and stiffness than usual. This makes two days in a row. (I think those of us who live with rheumatoid arthritis day in and day out would agree that this qualifies as a streak!)
These past two weeks have been quite memorable. When this latest flare started, I immediately labeled it as one of my worst ever. In a way, this was true. The pain was not only in more joints than usual, but it was more intense than usual. During multiple electrotherapy sessions, I reached the maximum level of current without my feet being able to register any sensations. This had happened before, but only for a day or two. This time, it lasted for two weeks.
Agony pretty much described the pain that I was experiencing in my shoulders. Previously, they have only “popped” for a few days. Right now, I am going on two weeks in which they continue to sound like I am playing with bubble wrap (the type with the extra-large bubbles, of course). Just this past weekend I had an episode where I could not move my right arm at all. Soon after I laid down to give it a rest, the same thing happened to both feet. Before I knew it, the only limb that I actually had control of was my left arm. Panic mode? Nah, not any more. Instead I told myself that it was a good thing that I am a lefty, and continued to ride out the episode.
I continue to learn that my acceptance of the impact that rheumatoid arthritis has on my life is a process which will probably never end. As I just wrote, I immediately labeled this flare as one of my worst ever. With this seemingly normal reaction to what I was experiencing, I think that I was actually rejecting, and not accepting, my situation. I started to tell myself that it was less important to compare this flare with other flares, and it was more important to focus on getting through each hour and each day. I have done this before, and I knew I could do it again. I reminded myself of this, and all of a sudden getting through this flare seemed achievable.
When I went to see my rheumatologist, I actually did not feel like taking another Prednisone burst – and I told him as much. I wasn’t trying to be the stoic…I just knew what my body was and was not ready for. And at that moment in time, I knew that it was not ready for another Prednisone burst. We agreed that we would instead use some Clofenac injections…three, to be exact. My last one was the day before yesterday.
During the first few days of this recent flare, I was reluctant to look into the mirror. My face looked like it had taken a few punches. There were dark bags under my eyes. Nobody needed to look beyond my face in order to know what was going in inside my body…I was indeed being beaten up, just from the inside out. So when my rheumatologist handed me a sample of two sleeping pills and told me to please take them, I dropped all of my previously held reservations regarding sleeping pills and decided to take them. I hadn’t even raised the topic…but obviously he too was able to read my face.
I split the pills in half, and took them over the course of four nights. I slept like a log each night…up until exactly 3:30am, that is. Not a full night of rest, but more than I had been getting before…and enough for me to recharge my batteries somewhat. I think these periods of true rest gave my body the energy to start coming out of the attack that is was under.
Is there some good that came from these past two weeks? Of course. For the first time ever, I experienced episode after episode of extreme pain and mobility loss, with absolutely no anxiety. Instead of getting scared when the first signs appeared, I instead thought of them sort of as blinking lights at the theater. There, this mean that I have a few minutes to get to my seat before the play starts. Here, this meant that I had a few minutes to prepare myself for what I knew was coming. Get myself a glass of water. Put on some pain cream. If I think I might need to lay down, fill my nightstand with books and music. Tell myself that even though I might need to take a break from movement, that I can still do a lot…and more importantly, I can keep my mind occupied. It’s going to get bad, I know, but experience has also shown me that after an hour or two things will get a little better.
For about ten days, I did this dance twice a day. It then tapered down to once a day. Yesterday I danced with my rheumatoid arthritis for a mere ten minutes. It’s still there, ever present, but now at least we are a little more coordinated in our movement. We are actually beginning to get along with one another, and this feels good.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
We are your sisters and brothers, daughters and sons, mothers and fathers. We are your friends, coworkers, and neighbors. We have pre-existing conditions, but they do not define us. And they should not prevent us from accessing comprehensive, affordable health insurance.
Arthritis Ireland have won the award for the ‘Best Patient Education Project’ at the recent Irish Healthcare Awards 2009 for its ‘Coping With Emotions’ booklet.
In response to the findings of a survey on the impact of arthritis on people’s emotions, Arthritis Ireland has produced a new booklet called ‘Coping With Emotions’ that offers support and guidance on dealing with these emotions.
This booklet is available by contacting Arthritis Ireland on LoCall 1890 252 846 or can be downloaded here.
34 + years (Diagnosed in 1975 with JRA, at the age of 2 but probably had it since birth.)
What advice would you give to someone who has just been diagnosed with RA?
Don’t let anyone else set your limits. You can set your own limitations-YOU are in control. Do a lot of research, reach out to blog sites, RA groups and maybe a local chapter. If you don’t like your treatment plan, work with you doctor. It is you body and you know it best. What may work for some, certainly doesn’t work for others. Communication with your doctor is essential; just because he prescribes something doesn’t mean it’s meant for you. Be your own advocate!
Do you use any mobility aids?
No, but I have after recovering from surgery. I used a sock aid, a platform walker, crutches and those reachers/grabbers….to be honest, I still use my reacher-I’m only 5’5 I still need to use it to grab things that are out of reach or sometimes I use it to kill spiders that are out of reach, lol!
How has living with RA helped to improve your life?
I have developed and incredible sense of empathy, compassion and loyalty towards others. If I see someone in pain, I am the first one there to help them. If I see someone who needs assistance-I will offer mine. If someone needs a shoulder to cry on-I’ll give them mine. I am most thankful for those qualities.
This disease takes SO much away from you but it has also given me so much strength, and courage for one person I feel like I could conquer the world if I needed to. I have the drive and determination to get through anything. Without RA I don’t know if I could do that.
Do you have any visible signs of RA?
Oh absolutely! I have hip replacement scars (right and left sides) swan neck deformities in my wrists, deformed ankles, swollen fingers, hands and elbows.
Can you please describe some of your favorite coping strategies for living with RA?
If you are having a bad day, talk to a good friend, relive fun memories or cry it out. Just remember to take it one day at a time. It may take awhile but sooner or later-you will begin to feel better. I know I am stronger for having RA and I know I fight a good fight everyday but we all get knocked down, it’s up to us to pick ourselves back up again.
Can you please describe your current medical (traditional and alternative) treatments?
Two tablespoons of Tart Cherry juice concentrate daily, Calcium, Vitamin D, the occassional massage and acupunture treatment as well as Humira, Imuran and Mobic.
Is there anything else about yourself that you would like to share?
I am the type of person that if you told me I couldn’t do something, I would do it anyways out of spite. That’s the determination in me. I have had RA for 34 years but I refuse to let RA have anymore of me then it already does.
If I do, RA wins….and I am not a quitter nor will I be defeated.
I am a young woman with rheumatoid arthritis living and working in Mexico. I graduated from the University of Kansas in 2007 and like every young person looked forward to what i saw as an ideal future. However, when my disease came out of remission in late 2006, my life took a totally different direction.
In place of the impressive job and swanky apartment I wanted, I ended up unable to work and living with my parents. I traded in my beloved nightly martini for cocktails of drugs. As I began to lose the ability to walk well in 2008, I came to the realization that disability requires creativity. I received a total hip replacement in May 2009 and decided to make a move.
There undoubtedly will be some obstacles and the not so occasional mistake made. However, Id rather live by my own rules than dictated limitations. I hope my story will be a resource of ideas, truth, and hope to others who are also trying to make their own rules.