For years I have sworn off posting medical information on this blog. I felt that there were enough medical blogs devoted to different diseases and ailments. I know that sometimes it is good for people to read that “they are not alone”, and that other people have taken or are taking similar journeys. When Allan was sick, I broke my “rule” and did write about many of our experiences. Some was to inform people, much was cathartic. Sometimes, it was to hopefully let people see themselves. One can always say what they will do in a situation, but until you are in that situation, you really don’t know. I didn’t want my blog to be the blog about pancreatic cancer, but Allan and I went on that short journey and I chose to relate some of it. The response from this silly little blog’s readers and my flickr contacts was incredible. Most of you were people that we didn’t know “on this little blue ball”, and some of you that we met “in real life”. You know who you are. When Allan lost that battle, there you were – those people met through my writing, who became friends who stood by me, and hugged me.
I was diagnosed with RA (rheumatoid arthritis) in 2008. I have been fortunate to have some great doctors that I am working with. Between several illnesses and surgeries in the last 20 years, and Allan’s trying to die with dignity, I have more experience navigating medical bureaucracy than I knew was possible.
My shoulder surgery in February was a bit of a surprise. Not the surgery itself, but the fact that it turned into so much more than expected. Once again, I was homebound and had a physical therapist coming to my home. Within three weeks, I was unable to have the physical therapist touch me, the pain was that intense.
For several months I have been on a journey. That journey has been to discover what is causing my pain. I have had every test under the sun, most have ruled something out. None have proved anything specific. My pain is so severe that after my RA drug was changed, I still believed that it wasn’t working. Blood tests have proved me wrong. The Humira IS working. My inflammation levels have dropped. I was so happy that I was wrong. That said, my level of pain remains unchanged. Yes, I have had neurological testing. That was another good thing, because it proved that my pain is not neurological. It also brought the new diagnoses of chronic fatigue (duh) and fibromyalgia.
All I want is to feel better. Good would be great! Like they say, I am sick and tired of being sick and tired. Unfortunately, one of the most painful parts of my body are my fingers and hands. I am trying to start to use Dragon’s voice activated software.
I will continue to try to post more often, I really do miss it. The posts might simply be one of my old post cards and some thoughts. Because, like I’ve said before, I don’t want this to be about my illness.