Things are going well with the continued treatment for my chronic illnesses and the mental health problems that come with it. I’m on an effective treatment that keeps me moving, strong, and in less pain. I’m able to manage pain well without drugs because the VA finally covers massages. This journey through the U.S. Healthcare System is filled with bridges, trolls, and mountains.
Before COVID, I was being treated with Remicade. Things were going well. I just did the math with my fingers and I’ve been using Remicade since 2007, it’s been fourteen years. The reason I stopped is because a large calcinosis rock the size of half an egg broke through the skin on my leg and took eighteen months to get out.
It sounds crazy to me too, and it was my own leg. When it began to come out, I thought it would just fall out, but this rock had been accumulating for years and it was a bunch of smaller rocks that made one big rock. My skin didn’t open as fast as I thought it would and surgery Was a no-go because this was happening on my shin and there surgery would be an even bigger risk of losing my leg, so I had to ride it out.
My leg became infected often because Remicade is an immunosuppressant. I was stable so it only made sense to drop Remicade until this rock cleared. So eighteen months pass and I was doing well off of my medication. I remained off any immunosuppressants until a few months ago.
I don’t believe it was a mistake not to start Remicade. Fourteen years is a long time. I was hoping that if symptoms showed up, there would be something that works better and of course, I was right.
2024 was a crazy year. There were a few close calls, and for months my immune system kicked pneumonia and Covid’s ass. Unfortunately there was a side effect. With those life-threatening infections gone, my coked-up immune system turned on me.
I like to think of my immune systems as a battlegroup of ships. (Go Navy) These ships deploy fighter jets known as antibodies. Antibodies fight harmful bacteria or viruses. I have autoimmune chronic illnesses. Yes, that’s illnesses plural. Chronic illnesses are like potato chips, you can’t have just one.
What happens with an autoimmune illness is that the pilots in those fighter jets aren’t quite right. Instead of pilots like Maverick in Top Gun, mine are more like pilots who never left the rave. Instead of working out, eating healthy, and sleeping; the pilots of my antibodies are doing keg stands, cocaine and Molly on the flight deck between missions.
After pneumonia and COVID, these pilots kicked up the party a notch to celebrate victory. Antibodies got to antibody, and my pilots don’t know when to say when. They went on a blowout mission to celebrate by killing healthy cells like little Al Pacinos in Scarface. They fired non-stop killing everyone they loved, screaming in tiny microscopic voices, “Say hello to my little friend!”
Antibodies gone wild are called flare-ups. I’ve had my share of flares, but this one was for the ages. My muscles were so weak I had trouble standing. Moving was nothing but excruciating pain. It took me four hours to get ready every day. I could not see myself coming back from this one, but my doctors at West LA Veterans Medical Center and my outside specialist once again pulled me from the jaws of pain and misery.
It took a few months. First we had to figure out if the flare is sarcoidosis, scleroderma, both, or something new. They share symptoms called an overlap. Rushing to prescribe could do more harm than good. Prednisone is a go-to for inflammation, but not with scleroderma. Then, something wonderful happened, eye pain. Glorious eye pain.
My eyeball hurt like a mo-fo. This was new. It’s not great to have new symptoms, but adding medication for this kind of pain is a big move. It’s beyond difficult to be patient while waiting for diagnostic clues, but I have grown used to it.
That fresh hell of eye pain was just the diagnostic clue my outside specialists needed. Eye inflammation or uveitis isn’t (usually) a symptom of scleroderma. So he prescribed prednisone- which is often contraindicated for scleroderma.
The next day, I. Felt. Amazing. Instead of laying around for hours waiting for the ibuprofen and Tylenol cocktail to work just so I can take a shower. I jumped into the shower and bounced through my day. A few weeks later, I saw my doctors at the VA and they renewed me for one more round of prednisone while everyone figured out the next step. Prednisone works, but it’s no long term medication. The mystery took a few weeks to solve and we started with the hard data from diagnostic tests.
One CT scan, PFT, echocardiogram, and vials of bloodwork later, I had all the information needed for my outside specialists. Not to flex, but I am lucky enough to live near one of the best scleroderma specialists on the planet. He is also a colleague of my rheumatologists at the VA, teaches at UCLA and around the world. (Damn right I have a team thanks to Medicare and Veterans Healthcare. I’d be dead without it.)
At the office of my outside specialist, went through the new information and compared it to the same tests results through the years. There was no progression in my lungs. My heart looked good. I was definitely in the middle of a flare which might lead to more pulmonary fibrosis. We needed to get in front of it like yesterday.
Then my specialist said, “I’ll be right back.”
He’d done this before, gone to his computer to check the latest data on NIHS. There is data published every week. Research doesn’t stop once a medication passes the FDA human research requirements and released into the wild. By that time thousands of people have been tested, variables accounted for and side effects treated.
You see, research is done in studies with variables identified. When it goes out to the public, that’s when variables can’t be corrected for, the research has only begun and it’s never ended.
One example is famotidine. It’s the active ingredient in meds like Zantac. You might remember seeing lawyers advertising to sue due to cancer. However, as time passed and research continued, it became clear that cancer occurred while on famotidine, but was not the cause. How do I know? My outside specialist told me when he prescribed a while ago. He ran out to look over thew most current data.
When my specialist returned to the room, he told me that the research regarding the medication he wanted to prescribe once showed a higher occurrence of blood clots, however over the past few months the research is showing that side effect is occurring less and less. He told me he was comfortable prescribing it based my data and history of twenty years as his patient. I was comfortable with it because of my history as his patient.
I began the new meds in the fall of 2024. It’s February and my sedimentation score, or inflammation rate, has gone from 75% to 26%. I’m here because of the non-profit socialized Veterans Healthcare and Medicare. Everyone should get the healthcare I do. We only hear about Veterans Healthcare when something goes wrong. United Healthcare has an even worse record, but VA Healthcare doesn’t have that sweet sweet PR and advertising budget private insurance companies enjoy. When you take money off of people at their worst, loyalty is to shareholders is a priority over patients, no matter how many times they claim their patients thrive. We are only seeing what insurance companies want to show us. There’s no objective oversight committee to stop waste fraud and abuse. Insurance is the grift that keeps on grifting.
Bet you didn’t think this post would lead you here, but treatment and diagnosis are only part of the story when it’s someone’s job to deny care based on profit.
Big anniversary today. Two years, the big 02. It’s been two years since I moved. I am even unpacked.
It turns out that moving is not a coping skill.
This year I had pneumonia and then covid. Part of me believes that it’s my body telling me to slow down and an even bigger part tells me I need to use hand sanitizer and masks.
I was all set up to quit comedy and then I booked a local show for tomorrow, Wednesday September 25th. I’m adapting my comedy schedule. I just need to ask to go up early in the show so I can go home to sleep at a decent hour.
I’m now the comedian who insists on going to bed at a decent hour. It may be permanent. I won’t know if I don’t try. I’m challenging myself to stay on my daily routine. Recently Jamie Lee Curtis said that we need more matinees. I’m just putting it out there in the universe.
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.”
And of course, the Turtle’s name is Ricky-Bobby.
Hello, my name is Karen Vasquez. In 1994 I was diagnosed with a rare progressive degenerative disease called, scleroderma. I felt isolated, even in support groups and after the internet became a thing. I thought no one could possibly understand what I was going through. In 2007, I was diagnosed with sarcoidosis in addition to scleroderma and that opened my eyes to the similar symptoms experienced by people with different chronic illnesses. I started talking to people with other chronic illnesses and people who don’t have an ongoing medical stuggle. I found one thing that connected us all, grief. I may not know exactly how a person with Lupus feels, but I do understand their loss of function and/or abilities.
Not only did I find grieving loss in common with others who had different symptoms and hard to pronounce names, but I also found grieving loss in common with people who did not have chronic illnesses. Sure, I don’t know what suddenly losing a job after twenty-three years feels like, but I do understand what it’s like to lose my thumb at twenty-five years old. Yes, they are distinctly different devastating losses, but both trigger overwhelming grief.
The Grief Connection
In college, I was introduced to two books; one in psychology class and the other in philosophy class. They are The Five Stages of Grief and The Power of Myth. The Five Stages of Grief, by Elisabeth Kübler-Ross, is based on her studies of death and dying. The Power of Myth is based on a six-hour conversation between journalist Bill Moyers, and author of The Hero’s Journey, Joseph Cambell at George Lucas’ Skywalker Ranch in 1998.