So, what’s on your mind today?

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You know that credit card commercial that says, “What’s in your wallet?” Well, the phrase, “So, what’s on your mind today” popped into my head when I sat down to start working on this blog. Stopping my RA medication is what is on my mind. Why, oh why, would the doctors think this is a good idea after one full year of trying to find medication that worked? If you have been following my blog, you know that I suffered for over one year while we worked to find a medication combination that would control the RA pain. We finally found that combination and I had almost two months of a controlled pain free existence. So, what happened?

Short version is I had to have surgery to remove a cyst that they found when I was hospitalized in November for my RA. They had been monitoring the cyst and decided that it was time for it to be removed. Since the drugs that we take for our RA lower our ability to fight infection, they stopped the medication a week leading into the surgery and for two weeks after the surgery. I am going on the second week without RA medication. I was more concerned about coming off the RA meds than the surgery. So far, I have had two flare-ups, the day of the surgery and last night. The one from last night is borderline gone. I feel it getting ready to flare-up again.

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The day of the surgery, my right shoulder and left hand were inflamed. I could not take off my wedding band because my fingers were swollen. I could barely lift my right arm. I made sure that the surgical team was aware of the inflammation so they did not further inflame the areas during the surgery by lifting or tugging on my body parts that were impacted. I told the operating prep nurses who were especially comforting and considerate in transferring me from bed to bed or moving my IV, etc. One nurse went so far as to get a different hospital bed that was more comfortable. What I learned is to be honest and to tell people how you are feeling. It really made a difference.

My surgeon had her team contact my RA doctor about stopping the meds. My RA doctor told the surgeon to tell me to call her if I had any flare-ups. Of course, I had a flare-up and my RA doctor was gone. I had to go through a nurse advice line who contacted an ER doctor to find out what medication I could take. What I learned is to have a plan in place. I should have contacted my RA doctor directly and ran some scenarios by her. Instead, I sat back and assumed that I would be able to contact my RA doctor if I had a problem.

While I have had several flare-ups, I am managing fairly well. The surgery went well and my recovery has been good. So much of what I was worried about hasn’t happened. I thought I might end up in the hospital again with acute pain. While I am still nervous about going another week without my RA medications, I am hopeful that I will get through this period and get back on the RA meds so that I can love my life even with Rheumatoid Arthritis.

Stay healthy, pain free, and happy.

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