In fact, I was doing so much better by the next visit to the rheumatologist, in October of 2009, we decided to not start the new drug protocol (an infusion). I still needed to have blood work done every few months (to check liver function) because of the anti-inflammatories (Celebrex, Aleve/naproxen, extra strength Tylenol) I was taking to reduce the number & intensity of flare ups, but as long as there weren't any major changes in my condition I only needed to go back to the rheumatologist every six months (as opposed to every 2-3 months).
Of course I still had flare ups. When I would start to feel almost completely "normal" I would often forget to get enough sleep, or would think I could do more than I really could. Yup, there were numerous times that I would mismanage my spoons and end up paying for it over the course of the next few days. But life off the medications was SOOOOO much better.
We were able to take a vacation to the Pacific Northwest without having to worry about keeping injections refrigerated or planning our activities around how much sleep I would need to recover from them. Yes, I still couldn't wear any shoes other than tennis shoes, but that's not a huge price to pay to avoid going back to the medications and their side effects.
As I said before, though, I still needed to pay attention to things. Playing with my nieces and nephews could be done, but I couldn't be as active as I would have liked to have been and I needed to anticipate how my body would react to these activities. Which really means that I would need to take extra anti-inflammatories both the day before and several days after a fun visit.
Getting enough sleep and staying hydrated were also important. The sleep was important because it gave my body time to rest and restore. The hydration was important because it helped flush the waste products from the anti-inflammatories out. When I visited with the rheumatologist in December of 2010 she said that I was doing well enough that, barring any major flare ups, I wouldn't have to see her for a year. YIP-PEE!!!
Author's note: This is post is part of a series regarding my experience(s) with an autoimmune disease. My experience is unique to me and does not speak for all patients with autoimmune diseases.
