Location: DeWitt, NY
How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down.
It is difficult to keep my weight down. I don't eat very much, but I'm a small person, and need to burn off calories with exercise. I used to do yoga twice a week, but holding the poses became excruciating. I try to do Pilates as often as I can, since it is less painful, but it makes me dizzy. There are days when the most I can manage is a slow walk on the treadmill, and then I feel very much like a wimp.
I have difficulty sleeping. Every position is uncomfortable, or downright painful. Turning over is a nightmare.
I also have bouts of depression. When they come, I have trouble organizing my thoughts, and this is extremely frustrating.
I am a handweaver, but sometimes find weaving unmanageable - especially if I need to re-thread a project, or get under the loom to change the tie-up. I began spinning my own yarns a couple of years ago, and this is actually a great activity for times when the weaving becomes difficult. It's a way to remain productive, and keeps the creative juices flowing, as well.
I take some nasty meds that I would much prefer not to be taking. Sometimes, it is the medication that makes me ill, and then I take other meds to prevent the side effects.
The Sjogren's Sydrome means carrying lozenges at all times, so my handbag rattles. You can definitely hear me coming. I am thirsty all the time, so I always have something to drink in the car, and I'm always worried about whether or not I will have to go to the bathroom wherever I happen to be.
What would you like for other people to know about your conditions? This is not "wear-and-tear" arthritis! I have some of that, too, but RA is an autoimmune disease that comes with side orders of depression, fatigue, stiffness, pain and internal organ damage. I am not too lazy to fold that pile of laundry or walk down that flight of stairs. It actually hurts. When I have a flare, the pain is unrelenting, and it is difficult to refrain from crying.
What would you like to tell someone who is recently diagnosed with your conditions? I take my cues from my mother. She has MS, but she has always been an incredibly creative, active, independent and somewhat feisty woman. I refuse to let illness define me, or limit me. But getting around the challenges is difficult, for sure. If you can't run, walk. If you can't walk, swim. Keep mentally active, as well. The more your mind is occupied, interested and engaged, the less you dwell on your illness.
There are wonderful mouth moisturizers available to help with the Sjogren's, but in a pinch, Ice Breakers Sours provide relief.
If something is difficult on one day it doesn't mean that you can never do it again. Keep trying to do everything you want to do.
RA is difficult to diagnose, so I've spent a great deal of time wondering if I really have it - if I'm an imposter - and if my rheumatologist really knows what he is doing. I've learned to interpret the numbers and to ask lots of questions, and this helps me to deal with the doubt.
Margery's favorite quote: "You are unlimited." (She got it from a Yogi teabag.)
Thank you so much for sharing your story, Margery!