Hi All,
Sorry for not keeping up with you all. I have been lurking though, not Walking-Dead kind of lurking! I promise not to bite or scratch! Sometimes I comment, but my depression is a bit escalated so I just think of a response or comment but find it's difficult to type it out while sucking on my thumb.
It's been a year since my original diagnosis of Pulmonary Fibrosis. My pulmonary function tests are pretty good, so I'm not in need of oxygen assistance yet. Yay.
The clinical trial almost killed me! Well, not really but sometimes I wished I was dead while on it. I made it through 8 months of the 9 month trial before having to drop out. The medication I was taking was not Perfinidone nor was it the placebo but they were testing a chemo-drug that had proven to delay progress of fibrosis in cancer patients so they were doing a "tolerance trial"!
I tolerated the side effects pretty well for the first 4 months but each week the nausea, dizziness, physical and mental fatigue, headaches, joint and muscle pain got worse and worse until I just cried UNCLE!
The trial people were super supportive! They were extremely understanding of my need to quit the trial. Since my bail from the trial I am feeling better, not good, just better.
The pulmonologists tell me I have to keep moving. Move, Move, Move! My ortho guy says my knee pain is due to bone-on-bone in my left knee and advises a total knee replacement. My pulmonologist will not sign the release for me to have the surgery, saying that the condition of my lungs will hinder my recovery yet he keeps telling me to move! The more my knee hurts, the harder it is to move but oh so easy to cry and want to punch walls and stupid people...sometimes even nice people!
But wait, there's more!!! Blood tests results show I'm positive for Lupus and Scleroderma but not showing enough of the physical markers. They will not make a firmative diagnosis but they are telling me they think the fibrosis is caused by an autoimmune disease...BUT there are, oh, about 5000 to 6000 autoimmune diseases and it can take 5 to 6 years to actually figure out which one it is! In the meantime, the average life expectancy after diagnosis with PF is about 3 to 5 years. I'm down one year, so who knows...maybe I'll email the Shadow. Word is the Shadow is in the know.
I see my primary physician tomorrow. During my last visit she suggested increasing my anti-depression med and I refused but this time I'm begging for it.
I also see my ortho doc tomorrow and am going to ask him about a knee ablation procedure. The steroid injection he gave me three months ago relieved the pain for about 3 days and, bam, the pain came back with a vengenance!
The therapist I've been seeing (psychologist not physical) has been a tremendous help with coming to terms with lots of life's stuff. She is an awesome therapist. I really have no idea where I'd be if it wasn't for her and the support of the Guy.
The Guy has truly stepped up and is my hero.
All is not bad though! My grandson checks on us all the time, asks how I am doing, if there is anything he can do to help. He is my second hero.
The Guy and I are in the mountains a couple of days a week searching for the next great photo. Alternative days he and his buddy are out hiking in the mountains photographing wildflowers, picas and marmots, bears and foxes, sunsets and rainbows.
When he is gone I paint, refinish furniture and swim.
Together we visit with good friends and are still planning to relocate, probably to Ohio, but still not sure.
Two of our granddaughters graduated from college this year. One with a teaching degree and the other one with a degree in structural engineering. One of our grandsons is headed to Australia for a month and another had his first equestrian show! Our 9-year-old greatgrandaughter is racing dragsters. She does the 1/8 mile in under 12 seconds and has a killer reaction time from what her pit crew say. The paint job on her dragster is a holy-moly look!
The Guy and I flew to Denver, visited with a granddaughter, then drove home. The drive was glorious. We visited Rocky Mountain National Park, drove through Vail Colorado while the aspens were strutting thier glorious stuff.
I hope you are all doing well and staying well. I'll be checking in on you and if the increased meds work, my thumb will be out of my mouth long enough to comment on your wonderful blogs.
