Hello! I’ve started other blogs, but I’m back at The Mighty Turtle. I know it is confusing, so I will clarify.
It all started in December of 2022, I dislocated my right shoulder. I could not do so much as brush my hair, and my only choice was to rest it and allow it time to heal. Easy, right? Fuck no.
Due to the progression of scleroderma, my hands are contractured – curled similarly to rheumatoid arthritis but doesn’t affect the joints; it is my connective tissue, specifically the fascia of the muscles and shortening of the tendons in my hands. Through the years, I have counted on my right dominant hand to grab and do everything and use my left hand to assist. If I could go back in time to early occupational therapy, I would train my left hand harder.
When I can’t fix something, I must grow, but before I could start growing, I had to make it livable- it was the day before Christmas, and there was no way to expedite a caregiver.
Through the years, I have refused caregivers. The ones I did have back in the early 2000’s and 2013 made my personal life terrible. One caregiver did her laundry at my house- not a problem, but a dirty man’s shirt somehow ended up in my closet, and my ex-husband accused me of cheating on him. The one in 2013, I’ll spare you the details.
So I laid around for three weeks using a cleaning service and when I got my puppy, doggy daycare. I maintained the dishes and kept things clean between visits from the cleaners who came every two weeks.
Why didn’t I have family or friends stay with me? Some friends helped, and some family helped, but caregiving changes the dynamics of a relationship. If I had something that might stop, like cancer- that’s different, but this has been ongoing for thirty years. At the time, I needed to set up care with the VA because I’m not getting any younger.
I also took the liberty of hiring someone through a caregiver recommendation service. I found a very nice, qualified, and professional caregiver, but I used her services only twice due to the cost. In February of 2023, the VA finally sent someone to help. She seemed great at first, but that relationship didn’t work out. The next person they sent helped initially but quickly settled in as someone who believed cleaning wasn’t their job and somehow become a user in my Amazon Prime Video.
The great thing about veteran healthcare is that I have recourse. I requested someone from a different company. The following week, I had a wonderful caregiver. It was a good move, and I was beginning to regain my strength. I finally came up on the waitlist for my dog, Egon. He came home in April, and by June, I was asking myself what in the hell in the wild, wild world of sports was I thinking?
It turned out okay, because I had help. Things began to get better. Before my puppy Egon arrived, I sat in my apartment for days. Instead I went outside several times, every day. Egon helped me get exercise, and he continues to add life to my years and years to my life.
Then, sometime later in 2023, I felt heavy, and it was difficult to walk. It turned out I was anemic. The severe kind of anemia, and I was given two rounds of iron infusions. I felt better, but not great. Then, my ankles began to swell, and stiffen. It felt like scleroderma was attacking my ankles. I eventually figured out that if I took three or four hours every morning to rest between stretching, I would find myself able to move easily by 1:00. That interfered with living in the real world and routine doctor appointments. I began taking Lyft to and from the VA. Not often, but often enough.
It was clearly something I could not fix, so I had to make it work. After 1:00 PM availability, doggy daycare and Lyft were unsustainable. What helped me get through was creating one routine at a time. I made so much progress. Things got a little better and then in early 2024, I got pneumonia.
I spent about two-plus months actively sick in my lungs, coughing lung cookies, etc. ER visits, pulmonary function tests, chest CTs, and two rounds of antibiotics made a dent, but I wasn’t getting better, so once again, I had to rest. Luckily, my caregiver at home was already in place. She made it easier and more manageable. I know I am here because I had help that would not interrupt, but help keep me on my routine. My family helped support my routine by paying to clean my house. Friends sent me DoorDash.
It has always been difficult to ask for help. I guess this time, I was ready.
Meanwhile, my rheumatologists and pulmonologists at the VA hospital were concerned that inflammation caused the pneumonia. They called it organized pneumonia. This meant it was time to put me on a new immunosuppression treatment. Something that could fight the fibrosis. There were options, but I also have sarcoidosis.
Often, my sarcoidosis symptoms are mistaken for scleroderma. I even stopped working with a pulmonologist because he believed the sarcoidosis was caused by scleroderma. In some cases, that may be true, but after working with Dr. Furst for more than twenty years, an expert in scleroderma and other autoimmune diseases, I decided to wait to see him before starting any new treatment. Besides, he was the doctor who found the sarcoidosis.
Because I was so sick the past year, I hadn’t seen him in over one year. I was worried I didn’t act fast enough, and scleroderma was in high gear, but I am glad I waited.
I have the luxury of waiting because of my veteran’s healthcare; I have access to teams of specialists who order tests without prior approval based on what my doctor thinks I need, not some person with no medical training denying services my doctor orders, thanks to healthcare at the VA. Everyone should have health care this good, but that’s another post.
While waiting for my heavily anticipated appointment with my outside specialist, I was being followed closely by both the pulmonology and rheumatology departments, and technically, we determined I was stable. I needed to clear the fluid from my lungs, which with pulmonary fibrosis takes time. HRCTs showed I was getting better, allowing me to get test results with progress to bring to Dr. Furst.
Then, the Thursday before my appointment, I woke up with pain in my right eye. I’ve had sensitivity to light before, but never with pain. So it was off to the ER in a Lyft again. After seeing an ophthalmologist, I was diagnosed with anterior Uveitis. It’s basically inflammation in my eye. I was given steroid drops, and the pain stopped almost immediately.
During my appointment, Dr Furst, the resident he was training, and I went over eighteen months of my test results along with a resident doctor who was learning about scleroderma- because Dr. Furst is always teaching. I love it – it’s like, enough about me, tell me more about me.
We were at a crossroads. Was it scleroderma or sarcoidosis? Luckily, we had a tiebreaker. My skin score showed no signs of re-occurring scleroderma. My skin is still affected by scleroderma but in a tethered state. That means my skin is loose, not tight and bound; an inactive state of disease progression. Tethering can be referred to as “The Wreckage.”
My doctor concurred with the doctors at the VA; that my pneumonia was actually caused by inflammation. Usually, it’s the other way around. He suspected it was from sarcoidosis, but the eye inflammation incident was not something that happenes with scleroderma. So, he treated what I have as sarcoidosis, not scleroderma.
The funny thing about that is- when there are multiple diagnoses like mine or for other people with autoimmune combinations like lupus and scleroderma and rheumatoid arthritis- there could be another yet-to-be-diagnosed autoimmune condition that hasn’t presented enough symptoms to be diagnosed. It’s important for long-term care treatment to have data along with my symptoms to dictate treatment.
I was prescribed a month-long prednisone treatment. By Friday, I was feeling fabulous, and on Saturday, I did a comedy show without crashing. I felt alive again. Like someone woke me up.
It’s Monday I feel freakin’ fabulous. I’m a bit “roided out” as the kids say, but I’m stronger and can walk without pain. I am able to use those muscles with ease.
Now, the healing phase. I can only hope at the end of this round of prednisone, I feel just as good if not better than I do today, but like everything with an incurable, progressive degenerative disease, only time will tell.
About the other blog I created- even though I was lying around a lot, my mind was swelling with unexpressed creativity. I created a cool logo and decided to retire The Mighty Turtle. (*see re-creation below) What I should have done was set up something similar to a “late-night” text prevention task, like having to solve a math problem before posting while sick. Hindsight! Am I right?
It’s been a year. Now that I’ve got a treatment path forward, I am doing what I do best, start over.
I begin cardio-pulmonary rehab in August and make it a point to take my dog Egon to the dog park twice a day in addition to frequent short walks due to apartment life.
I used to believe it was adapting and overcoming, but what I really do is grow. My process is to solve the problem by learning to live with it. It’s adapting but not overcoming. The goal is to overcome, but that may not be an option, so I must learn how to work with what I’ve got, or grow. The disabilities do not go away. Sometimes, they’re bad, and I need to sit still more than I’d like, to heal. If scleroderma has taught me anything, it’s patience. And last Saturday night was worth the wait.
#To show the extent, here is an exact re-enactment of what was going on inside my head: Click Here -> my brain while recovering
This Post’s Movie Quote Theme is, “Blazing Saddles.”