I have a feeling that I am on the winning side of this thing but then started to have a pain in my right side, back & under my ribs, I knew it was one of my organs. My doctor called me in to go over my current test results and ordered my to stop all antibiotic immedialy. My liver ensimes were elevated to a point that we needed to allow it to return to normal. It is not unusual for the liver to elevate while on so many antibiotics and he is watching me like a hawk. He explained that we need to see how quickly the liver recovers to see which one of the antibiotics is taxing my liver. Quick improvement means the IV Rochepin slow means the oral. If it is the IV Rochepin we will just change to a different infusion.
Had another CD57 today - should know soon if there is more improvement.
If anyone thinks being sick means that you sit around the house all day ...boy are they wrong, all this driving to doctor appointments is like having another full time job and exhausting....but I do believe I am finally close to the finish line, that is why when I don't feel good I can't really wrap my head around it because I feel as if it is gone but then have to realize I might still have a ways to go. It's been over 2 1/2 years since I had the noticeable onset of my problems and 1 year 1 month of treatment now.
Friday, September 18, 2009
I am feeling better and trying to get back to my life - but sometimes I am walking a fine line. In the workshops no one would even think I have Lyme or any problems - but sometimes I feel pretty lousy, I have learned to pace myself. I have had students say, if this is you when your feeling bad, Jesus I can't even imagine what you would be like when your well. All I can say this is a battle that I intend to win.
I had to cancel all of my national and international workshops due to this disease but planed on keeping all of my California workshops. After having an allergic reaction to the dressing for the picc-line and seeing how it effected my whole body, (to my surprise) I am very happy that I did. It is one new experience after another, but my CD57 numbers are increasing and I have learned the importance of the picc-line.
I have had the picc-line for about 5 months now (but don't think it will be much longer). Before the allergic reaction to the dressing I had the first picc-line for 4 months. It has not been terribly fun, the first one was easier than the second, I developed a histamine reaction to my first infusion of the week, and found taking children's Benadril helped .....I wanted to quit, but the picc-line has been the only thing that has made a difference and improvement.
When I first got the picc-line they all said I could travel but it really is not as easy as it sounds, perhaps if you are resting but working can be a little bit of a challenge, lifting, reaching, infusion times etc. you just have to be careful and aware. Sometimes I am on the verge of disbelief that I have to teach a workshop at that moment, but when I am there I am filled and lifted by the response of the students and helping them.