Blazing Flare-Ups

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? 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.  

Saturday Night at The Ledge Theater

#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.”

Pneumonia and my Socialized Healthcare

I will share my experience of getting healthcare in ways most people do not believe possible.  I can't share my experience without mentioning the reality of our United States Healthcare system.  Many people with my condition do not have access to the best care. 

Imagine a world where we can get medical care without worrying about how to pay for it.  That's my world.  I have received world-class care navigating the VA and Medicare healthcare systems.    

What if everyone got the care they need? People with chronic illnesses and anyone else who needed care could live better lives, but of course, someone always has to say, "But communism."

Socialized programs like the military, Veterans' healthcare, and subsidized programs like Medicare and Medicaid help people. 

If we have billionaires, we can afford to take care of everyone, but instead of trying to make something work, we favor large corporations that make billions in profits.  We're a capitalist country, and shareholders need to be able to write off their yachts.  

On the other hand, I get to hear how doctors make all the money by doing unnecessary tests.  That doctors and nurses are greedy.  The truth is that American healthcare is governed by insurance companies, and because of it, people are living in misery unnecessarily and dying earlier than they should.  

For as long as I can remember, access to American Healthcare has been a maze of bullshit and dead ends. It improved with Obama Care, especially after removing the existing condition loophole. They can't deny care, but medications and tests can be rejected, which impedes proper care and exacerbates symptoms due to cost.  It happens all the time. But Obama Care can be improved. That's how laws work.  We pass them, then improve them as we get more information. These things don't happen overnight.  

I've had thirty years of veterans healthcare, private insurance doctors called "golden insurance," and Medicare. They all have problems, but I have gotten the best care with veterans' healthcare. 

For example, I have had pneumonia since mid-February. I have worked with the same doctors, nurses, techs, and specialists since 2014. I work with my VA team, which works with one of the greatest scleroderma doctors on earth. That's not my opinion. He took on scleroderma research and treatment in the 1970s and teaches doctors worldwide. He doesn't work at the VA, but VA doctors are his colleagues at UCLA Healthcare. He is a faculty at UCLA and medical schools around the world.  

VA Hospitals are teaching hospitals. In the early days of my diagnosis of scleroderma, I dealt with doctors who dismissed my symptoms as hysterical, called prevention of disease progression as "prolonging the inevitable," or fighting me and specialists on a drug formulary. For every doctor asshole who did those things, there were always three or four interns, fellows, and medical students who took the time to talk to me about scleroderma. 

This ongoing episode of pneumonia was first diagnosed in the ED by x-ray.   When emergency room doctors saw more fluid in my lungs where there was fibrosis and scar tissue, they consulted with the pulmonologist and rheumatologist on call.   I was sent home with a round of antibiotics. 

It seemed to get better at first, but when symptoms remained, I went back to the ED. I was immediately x-rayed and given a CT scan. I stayed in the ED until three in the morning. I saw two pulmonologists, a rheumatologist, and three other ED docs. My blood was drawn and put into many tubes. Nothing out of the ordinary. I was given a broader spectrum of an antibiotic and sent home. Unfortunately, I didn't get better.  

On my next trip to the ED, I knew everyone there. The nurses took my vitals, and I saw a doctor's lickety-split. This time, I was being admitted to the hospital. I never went upstairs to a room. I had a room in the ED. It was weird, but it was the best way to get me in front of specialists immediately instead of during rounds the next day.  

Two pulmonologists weighed the risk of bronchoscopy and began planning the procedure first thing in the morning. My blood was taken every six hours; there were at least fifteen tubes, with some weird ones ordered by infectious disease specialists. Luckily, I brought snacks. One of the resident rheumatologists stopped in with two medical students. It happens a lot anytime I get treatment. I will teach anyone listening to my experience and ways to improve patient care. ED docs were in and out of my room. That night, I saw two pulmonologists, two rheumatologists, two infectious disease residents, and a partridge in a pear tree.  Nurses checked on me and made sure I had warm blankets. After mountains of tests, a repeat X-ray, and finally, a visit from two infectious disease residents who cleared me to go. It wasn't quite yet daylight.  

I was sent home without antibiotics because, at this point, it was determined to be viral. I was told to come back if anything got even just slightly worse. I did it in a few days; it was a shorter version. My progress had plateaued, and I was told to rest and drink lots of fluids.    

You just read about four separate visits to the Emergency Department of my local veterans hospital.  I received all the tests ordered by four groups of specialists, I did not pay a single dollar, and I went home knowing that I could pop into the ED for a listen to my lungs to determine if I was getting worse. If so, the diagnostic dance with bloodwork, x-ray, and what was needed to give me a better chance of surviving pneumonia with pulmonary fibrosis.   

Can you imagine getting all the medical treatment you need and not going broke?  

I wish there was a way to get everyone the healthcare they need, but we can't, because money.  

Man or Bear?

 

Madeline Kahn, "Blazing Saddles."

As early as the first grade, boys chased me to kiss or grab me against my will. When I told my parents, it was always answered with, "Well, that's because he likes you."  Luckily, my family moved a lot, so I had to run from this guy every recess for only the entire year of first and half of second grade. The playground adults did nothing. I probably never asked because my family wouldn't listen to me, so why should they. 

I know the "Man or Bear?" topic was one hundred what-the-fucks ago, but better late than never.  

Last year, I did a show at a local venue.  Before the show, I was sitting quietly, writing in my notebook, as I do before I get in front of an audience. I pretended not to notice when I heard someone pull out the chair next to me and sit down. It was still early, and the room was pretty empty. 

“Hi, Karen.” 

I looked up and found a stranger chewing potato chips and smiling at me. I politely said hello, thanked him for coming to the show, and returned to my notebook. 

He tried to start a conversation without introducing himself. I told him I needed some time before my show. He asked me more questions, so I got up and went to talk with another comedian. After I saw he was no longer sitting down, I returned to my seat, grabbed my notebook, moved a few tables back, and went back to writing. 

The next thing I knew, the smiling, eating potato chips guy transformed into Crazy Yelling Man, faster than The Hulk.  He demanded I talk with him. I think I even apologized, and he yelled even louder, “Oh, so that's how you're going to be? I came to see your show, and you won’t even talk to me!’ 

I was at work. Stand-up comedy is my job. I would never show up at someone else’s work and insist they talk to me. I would never go to his payday loan company, demand his attention, and scream at him for focusing on his job. I would at least wait until his customer, who was experiencing hard times, leaves.  I'm a lady, god dammit.*** 

His behavior was frightening and disorienting. After the first few sentences, the rest of his words became noise. A talent I developed in my childhood to get through whatever trauma was in play.  I kept staring at my notebook until he, thankfully, stormed off. 

About three months later, I was sitting in LA traffic and had a flashback to the Crazy Yelling Man incident and suddenly remembered who he was. The guy at my show was someone  I had been on a date with six months ago. 

We had only one date; then he called the following week to tell me how nice he was for not ghosting me,

And he could not be with someone who had medical problems like mine. Which worked out because I lost interest when he played Kid Rock on the way home from our date. 

People go on only one date all the time and never see or speak to each other again.  To be fair, many have stayed on my mailing list, and men I have only gone on a date with have come to my shows.  Non-narcissists would be polite enough to come and talk after the show, understanding I might not recognize him.

So, if you are upset women prefer to spend time with a bear that will do one of two things; kill us or leave us alone if we curl up into our notebooks and play “dead” than a man we don't know with a capability range between unsafe and unimaginable terrors upon us, you’re part of the problem.

---

** The old joke was, “I’d never show up at your job and tell you how to suck a dick," but that's outdated and offensive. Sex Work is a noble vocation.  Predatory lenders are scumbags. 

Pulmonary Fibrosis and Pneumonia

 Pneumonia with pulmonary fibrosis on board is the fucked up scary nightmare it sounds like.  

For those of you who don't know, I have pulmonary fibrosis due to scleroderma or sarcoidosis. No one really knows for sure. I don't even know if there's a way to tell which chronic illness does what sometimes because they have similar symptoms. It's a really good time. And sometimes it is. When in the ED or at a doctor's appointment, attending physicians will bring in medical students, and I will tell them whatever they want to know from a patient's perspective. Actually, Grand Rounds was probably the first time I did stand-up.  

You might already know this, but when asked about my hands and I tell them I have scleroderma, it scares the shit out of people. I eventually found a way to joke about the ridiculous symptoms I could never imagine. They say event + time = comedy. Well, it never ends for me. There's always something weird. I learned to make it part of my life. Some people go to the gym, and I go see doctors. Not every day at the doctor's - so I've got time to go to the gym. Not that I go.  

I don't remember the last time I had pneumonia, so when I saw the x-ray and CT scan of fluid where the fibrosis is- the lower lobes of my lungs because- gravity, I knew I had to stay home and rest. Which really screws with my stand-up comedy career.  

This time, I told my family what was happening in real-time. I usually don't because, like I said, it's like incorporating a low-fat, high-fiber diet. It sucks, but it's manageable. Pneumonia kills people with no lung problems, so this was more serious than usual.  

I found it very helpful after I told them I didn't need someone to fly out. I needed a routine and help keeping that. Another person staying in my tiny, overpriced, one-bedroom shoebox apartment with my dog and me would've been a nightmare. It's not that I don't enjoy their company; I want no one's company when I'm sick. If someone's going to fly out, it should be for fun.  

Symptoms of an upper respiratory infection started in February, and one x-ray showed it might be pneumonia, so I was given a five-day course of antibiotics. I began to feel better, but then everything went to shit, and I got myself to the ED. Sure enough, an x-ray and CT showed fluid in my lungs. I was given another round of antibiotics, but one with a broader scope.  

Things did not improve, but they didn't get worse. The ED docs called it plateauing. Which meant no more antibiotics, just rest and rest. It takes longer to clear an infection when pulmonary fibrosis is on board. My new favorite snacktime treats are green tea, toast, and Mucinex.  

I've been home except one night for a comedy show I produce. Luckily, I have good friends in comedy who made it a damn good show. My voice was not back, and my friend Mary Huth co-hosted.  

Last month, while sick, I decided that I would keep a solid sleep routine instead of late nights at the comedy club. That meant no more shows and no open mics. My comedy career has failed to launch since the Covid lockdown, and I have begun to accept that my health will keep me from traveling. Wait, not my health- god management of my health requires I keep a regular schedule to get my groove back. Luckily, I have a comedy outlet. , I produce a monthly comedy show at Hollywood Post 43. My schedule will allow me to pour my energy into making it a kick-ass show.  

I tried the new format, making it no longer a bar show. I Post 43's Cabaret Room into a comedy club with a DJ. The comedians were great, and the show was a hit.  

I'm pissed off that fighting and now recovering from a complication due to my chronic illnesses are my number one priority. However, I'm grateful I can still have a comedy outlet to host, perform or produce. I love doing all three. Having a plan for when I'm well has always been essential. It gets me through the challenging parts. It's going to take some time. My lungs are healing, but I must overcome The Great Stiffening. More on that in another post. I'm so tired of waiting for my voice to come back completely. I'm recording an episode of my new podcast with my scratchy voice. (don't threaten me with a good time)

Thanks for reading!