Good news. The medication seems to be working. I took my notes to see the doctor. He was very pleased with my progress and has reduced the prednisone considerably. I had already asked two weeks ago to have it reduced because it was starting to over charge me. Insomnia city!
The following was decided:
- No more advair until completely off prednisone. No need for double steroid use
- Continue with labs every four weeks to keep track of blood counts
- add anti-bacterial medication for next three months, three times a week.
- Keep walking four times a week and try to increase distance beyond 5 blocks
- Sjogren’s syndrome has been officially added as part of diagnosis. He still thinks that I may have more than one auto immune condition.
- Prognosis is good.
- Special sleep test, bone density test and full pulmonology tests are to be done before return visit in June. Depending upon those tests, I may be able to get rid of night-time oxygen, singulair and other allergy medications.
Now, let’s talk about this from a long hindsight back to my childhood. We briefly discussed how I have always responded well to steroids. I told him that my mother and sister’s both stated how I had a dent in my butt as a child from all the steroid shots. Supposedly I was born having an asthma attack (according to the stories from mom). Asthma was just being treated by new drugs at that time (mid 1960’s). Who knows the side effects of those drugs that I took as a child. You can barely find a trace of them on the internet. In fact, one I remember clearly is not found anywhere except as a brief mention when I searched for another medication. Airayne. It was a capsule that had a special inhaler that punched holes in it and then you sucked it in like today’s version of advair.
Doc said that my auto immune condition has over ridden the asthma. That made me think back to my childhood. Maybe all those “asthma” and pneumonias I had may have been an auto immune condition all along. Yes, the asthma meds worked. Or did they mask the real problem all these years? It has me wondering and I will be doing more research as I go along.
I did tell the doctor about how all my rashes, itchy skin and open sores have just gone away. My skin has never been so soft. My allergy eyes and post nasal drip have completely gone. He did say that I still have crackles in my lungs. That is the scar tissue. He said the skin clearing up is the cellcept working.
I am also grounding. He didn’t quite know what to say to that. He said he had no information, but did put it in my chart. It is supposed to help with inflammation. I am sure it is helping the medication to do its job more effectively.
I mentioned about my hip hurting again as I reduced the prednisone last week. He said for me to continue to track what symptoms return as the steroid is reduced over the next 12 weeks. If anything unusual happens, to please email him. I also said that I was not as slimy as before. He gave me a questioned look. I told him that the post nasal drip has stopped, I wasn’t coughing up clear goo anymore and that overall I felt less slimy. He attributed that to the cellcept also.
So, Even though I have over $300 in doctor visits and several sets of trips to the vampire (Quest) over the next several weeks (and months). Not sure if insurance will cover sleep test or bone density test, it is okay. Somehow God will make sure it gets all done, the money will be there, and I will be moving forward to being more comfortable.
I did complain that the exhaustion factor has not really changed. He said that since I have gone so long with minimal exercise, it will be while before I regain my strength. He said that depending upon the lab results in June, he will refer me to pulmonary rehab to help with it. In the mean time, keep walking the dog.
Personally, I think it is God blessing me. Yes, He is using medicine as a tool. I know that I have team of women, men and leaders praying for me on a regular basis for health and endurance. Things all turned around when a group of godly men gathered around me at church and prayed sincere fervent prayers for me and my family in February.
There are still bad days. But now the hope I had in my heart is being felt as hopefulness. I look forward tomorrow’s promise of a new day. May it be a great day.