“You have Rheumatoid Arthritis.” Those are the words I heard after months of pain in my knees, and looking back in my hands and wrists. I had to really look it up – apparently the easy explanation is that my immune system is on overdrive and now not just attacking any illnesses, but my joints too. It’s a little more than that, but that is the gist of this chronic illness.
It had been a whirlwind 6 months, my daycare job of 6+ years had ended, not before I could barely get down and up from the floor with the kids I was watching; my family was told that after 10 years in the house we were renting that we had to move; and oh yeah, I’m a mom of four with the youngest being 3 at this time. I was in SO much pain, and we were looking down the barrel of a cross country move.
All this doctor told me was that he was going to start me on a medication that I had never heard of. Plaquenil is something used to treat malaria usually and is also an anti-rheumatic medicine and is used to treat symptoms of rheumatoid arthritis. I’m naive and feeling confused and lost, so I started taking it.
In the meantime, my family is packing and getting ready for this big move. I’m super stressed, to say the least. And then my ankles and feet swelled. The doctor wanted to see me again, but his next open appointment was after we were scheduled to be on the road. At this point I’m living on Aleeve and in my compression stockings – I’m feeling rather old.
Moving to a new, or like us, back to an old place, is like starting from square one with doctors and dentists and even friends for everyone. I was not looking forward to this for my kids, let alone for me. After we landed in Flag and finally got our own place AND figured out insurance, I was finally able to get in to see a doc, and through a referral, the wonderful rhuematologist doctor. In Flagstaff there is one rheumatology office, I had heard great things about the doctor there. He put me on some great, time tested medications for RA and took me off of the plaquenil.
Admittedly, it took 18 months to work out the kinks in what kinds and how much medication I need to be able to function like a somewhat normal human.
What have I learned from this experience?
Honesty
I have to be honest to the doctors about what I’m feeling, or what I’m thinking. Sometimes I have to push for what I need, I have to be the squeaky wheel to get some grease. I have learned to speak up for myself, respectfully, and push to get the help I need. With one of the first medications I was on, the “how” of medication delivery was giving me anxiety, so we changed to a different delivery method and I feel much better about it, if I hadn’t have said anything it would have been miserable.
Rely on others’ help
This is something I’ve always had a hard time with – letting others help. I’m the independent sort. I like to do all the things the way I like. Letting my friends or family do our laundry, or wash the dishes, or clean (Not just my wonderful husband, we have been teaching our kids these kinds of chores, too). It means the world, but it’s hard to let go of that independence.
Self Care is not indulgent
In the same light, I have to learn to take care of myself to endure this chronic illness. Not just a HOT bath now and then, when my knees will allow me to get down AND back up again, but making sure I watch what I eat. Yes! What I eat affects how my joints feel. Moderate, low impact exercise, and rest are essential to my functioning the rest of the day, and even the next day. If I overdo it one day, I am down and out the next day or two. Read up on the “spoon theory” – some days I have more than other days.
My diagnosis does NOT define me
Living with a chronic illness is a daily issue. There are no vacations or breaks. There is no escaping it. There may be good days or weeks. But it’s always there lurking. BUT, I am a wife, I am a mom, I am a Child of God, I am an elf and a fair building superintendent, I am NOT Rheumatoid Arthritis. I have to remember this when I am in a flare and my “everything” hurts and I am exhausted. There are things I can do or take to help ease the pain and get on with my days.
So those are the lessons I have learned, I sincerely hope that these also help others out there who experience chronic pain. Remember too to build up a support system to give you the breaks that you will need as life goes on.
