I was diagnosed at 21. I have a particularly aggressive case, so I literally went from feeling absolutely normal, working two jobs, being active and independent to, in the space of a few months, being unable to even get out of bed on my own.
What advice would you give to someone who has just been diagnosed with RA?
Breathe. And prepare yourself. I feel like there are two levels of acceptance, accepting that you’re sick and accepting that there is no going back. The second one is much harder to achieve, and I still struggle with that. For a long time I unintentionally kept thinking in terms of “sticking it out for a while” or “Well I have to give this up now but eventually it’ll be back to normal”. It took me a few years after I stopped using high heels to be able to give them away. I kept thinking that eventually I’d want them back. Informing yourself, finding others who have been there and can help you, and being honest with yourself and others is the best way to learn to accept what you have. Once you really accept your situation then you can start learning to make the best of it.
Do you use any mobility aids?
I have a cane I use when my feet get really bad, but it doesn’t help much as my hands, wrists and arms usually hurt just as much, so leaning on a cane is pretty pointless for me. I have a walker which helps a bit more, but hate using just as much, and when the flares are very extreme I rent wheelchairs if I need to. I do not, as of right now, need to buy one. Yet.
How has living with RA helped to improve your life?
That’s a really good question. I don’t normally think of RA as something that has improved my life. Quite the opposite. I spent a lot of time thinking about this one. My RA worked really fast and aggressively so I am stuck in bed a LOT. Making plans for the future is always very tricky, and the amount of cancelled plans, and events and occasions I’ve missed are too many to count. Because of that I have learned to really, really appreciate the good days. A day in the park with my family is a treasured memory, pulling off a birthday party for my son a major triumph. I absolutely love the good days, and doubt I would appreciate them nearly as much if they were easy, or common. RA has taught me to never take anything for granted, and I can appreciate that.
Do you have any visible signs of RA?
My feet are permanently swollen and have nodules, my hands are starting to loose their shape and are knobbly. My arms do not open anymore, and I permanently limp. I also have gained a lot of weight because of the steroids, and don’t think I will ever go back to being my ideal size anymore.
Can you please describe some of your favorite coping strategies for living with RA?
My son is my absolute favorite coping strategy. I was diagnosed while pregnant, and I believe the cosmos must have done that intentionally. I received the best news of my life, and the worst, within the space of a few months. On those days where the pain is beyond what I think I can cope with, and I refuse to get out of bed, it’s my 5 year old who achieves the impossible and gets me out of bed. He reminds me what I am living for and what I am fighting for. My husband is the strength I no longer have. He’s very good at determining whether I need a shoulder to cry on or a swift kick in the butt to snap me out of my depression. He fights with me and I know I would not make it without him. My stepson is the kindest, most thoughtful child I know. I once told him that heat helps me feel better, and now on every single bad day, when he’s with us, I always wake up to find a cup of tea for me, so that the heat from the cup makes my hands feel better. I’d be nowhere without the support circle my little family is.
I know those of us who have RA or chronic pain are told to tough it out a lot. And we do. We tough it out every single day, forcing ourselves up in the morning, getting dressed even if it’s a nightmare, setting one foot in front of the other all day, every day. I know there are moments that creep up in which we just want to scream. I believe in screaming. In crying and telling the world it’s not fair. In being vulnerable and not superhuman every once in a while. And then, once it’s all been let out, in getting up and setting that foot in front of the other once again. I allow myself those days in which I never even get out of my nightgown, as long as every other day I get up, get dressed, take as much control of the day as I can, then I don’t feel guilty for those days in which I let myself just relax and the dishes pile up in the sink.
Can you please describe your current medical (traditional and alternative) treatments?
I take steroids (as rarely as I possibly can as I truly hate them), Methotrexate and Orencia. I am on very high dosages of pain medication, and take anti-inflammatories. Those rotate as they do a number on my stomach. My medications change often as nothing I have tried so far has worked.
Is there anything else about yourself that you would like to share?
Before getting sick I was very much of an optimist, and I identified myself as a tough person. I had a hard life and a very unusual one. I ran away from home at 15 and since then I took care of myself. I’m Italian, have lived in Croatia 3 years and then moved to the US. If I wanted to cross the world I’d just get up and do it. I very much prided myself in being tough, independent and needing absolutely no one. Then my world was thrown upside down. I can no longer work or drive. I will never be able to live on my own again. My pride took a humongous blow the first time I needed help to the bathroom. In the six years I’ve been sick I’ve had to re-learn everything about myself. I still very much struggle with depression. Becoming active with an RA community (via Facebook and through blogs) has helped tremendously. It has taught me first and foremost that I am not alone. Others suffer just as much, and worse. And they understand. And I can whine about having to cut all my hair off because I can’t brush it and find support, or console a mother who’s child has been diagnosed and forget for a while about my own pitiful complaints. It has been a lifesaver for me. I am thankful to each of you who have turned your struggle with RA into a means to reach others. I’m indebted to you and when I grow up I want to be just like you.