Tears of RA frustration
Written on July 13, 2014 by Christine Schwab
My husband and I were on a magical vacation in Europe. I had my computer along and had writing time almost every day and that always makes me happy. If you asked me where life was on a scale of 1 to 10, I would say a 10.
And in a few hours it was going to change. After a busy day of touring we walked back to our hotel. I knew I was tired, but with each step it became exhaustion. My husband said, “Let’s stop for a bite.” I answered, “I need to get back to the hotel, not feeling so good,” and after an evening of chills, fever and aching I knew I needed to get on a plane and get home. I didn’t know what I had but when you have RA the thought of ending up in a hospital in a strange city is frightening.
The next morning we were on the plane. I slept all the way, taking Tylenol for the fever. Twelve hours later I was in my own bed, still shaking. By the next morning my breathing was so shallow I couldn’t get a good breath. A big part of my RA history has been with lung issues: damage to my lungs from RA medications and two years ago clots related to RA, so I am overly sensitive. The doctor put me on antibiotics that didn’t work, then steroids and more antibiotics and then a Cat Scan to make sure the clots were not back. I was not only very sick, but also very discouraged.
It was at the CAT Scan that it hit me. Actually as they started rolling me inside the machine. There on the top of the arc of the machine was my name CHRISTINE LYNN SCHWAB, not on a piece of paper, but on a screen built into the machine like a movie marquee. I started crying. Don’t ask me why, I am not afraid of CAT Scans, having had many as most of us with RA or JA have. The technician kept asking me if I was OK and I couldn’t answer. I wasn’t OK but I didn’t have any rational reason why not. I wasn’t afraid; the test would help us understand what I had that wasn’t responding to treatment. Still I kept crying as I had the test. They put me in a little private waiting area until I could calm down. Didn’t want to scare the other patients.
Once I got my composure, and it took some time, I understood I was crying out of frustration. I like to call it RA frustration. Here we go again, something else. Where will this disease hit next? Because I have been living with RA for over 24 years, and my joints have been in remission for 16 years, I have learned many things about dealing with a chronic illness
- It’s good to cry when you need to. You don’t have to have a reason, just let it out.
- RA and JA can be the cause or contribute to almost anything and everything and you need to tell your Rheumatologist of all your issues. I have learned the hard way, thinking this or that was not related to my RA and often finding out it was.
- We have to be open to trying new medicines and treatments. They are the hope of our future. You may not want to after you read all the side effects, but read the side effects on a bottle of aspirin and you will understand they have to print everything and anything that has ever happened to someone who took the medicine.
- Keep in close contact with your Rheumatologist. Don’t bug them but let them know of everything medical going on in your life. My Rheumatologist saved my life once when I was in the hospital with what other doctors thought was some type of lung issue. They knew I was on Methotrexate but never associated it, nor did I even think to contact my Rheumatologist. But when he found out they hadn’t stopped my Methotrexate in the hospital he went nuclear. They stopped the medication and I was fine.
- Keep your attitude as positive as possible. Yes, there are down times like my crying jag in the MRI, and those are necessary but then get back in the “I may have this disease but this disease does not own me.”
- Become an advocate. Raise money, talk with others, and make some noise to create awareness for arthritis. Not only is arthritis miss-understood with people thinking osteoarthritis is the same as rheumatoid, but the majority of the population doesn’t know that kids get arthritis too.
- And most important, look to the future. There are more and more medications in the research pipeline. Don’t be afraid of then, embrace the possibilities. I did by being in the first trial for Enbrel and my joints have been in remission ever since. Was I scared? Yes, but I was desperate and look what desperation can do.
- And if you’re an adult with RA, get involved with the kids with JA. They are the most amazing kids and they need our support and our positivity, as do their families trying to figure this disease out. You can come join me at Christine’s Kids on Facebook and read their stories, then send special messages to them and their families. Messages of hope and courage. They call it Paying It Forward. It’s one of the best medicines ever.