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!

Scleroderma and Cancer

The Mighty Turtle is about making chronic illness relatable.  We have more in common than we think and are braver and stronger than we can imagine.  

For example, take cancer and scleroderma. Autoimmune illnesses like scleroderma and cancer are completely different illnesses, but both used to be death sentences. Many cancer drugs, like methotrexate, are used off-label, improving the lives of countless patients with autoimmune diseases. I am one of those patients. 

Methotrexate slows the growth of tumors, cures deadly pregnancy complications like ectopic pregnancies, and slows the progression of deadly autoimmune diseases. Methotrexate has a wider range than Mariah Carey. 

Methotrexate isn't the only drug that can be used for autoimmune illnesses. I was prescribed Ofev in 2022. Ofev is a lung cancer drug now approved by the FDA to treat pulmonary fibrosis. I've taken a lot of medications for scleroderma, but this cancer drug is the first to send me games and a journal. Ofev has a program called Open Doors. It's a patient support program. 

I went to Ofev's website and filled out some online forms. A nurse from Open Doors contacted me. The nurse's job was to ensure I understood what I was being treated for, and the side effects of my treatment. I was given phone numbers and was told I would be sent some things to help me communicate with my friends and family. 

Of course, I will always talk to my doctors and pharmacists first about my treatment. Open Doors does not replace my doctor and pharmacists who manage me directly. This is for information about dealing with side effects and questions about the drug and tracking my reactions to treatment, and oh the schwag!

Remember the Big Pharma schwag from the 1990s? They had the best pens and stress balls. But this time, instead of pens, I was sent a deck of cards with conversation prompts, a journal with positive writing prompts, and material about managing side effects. This is the first time a pharmaceutical company has sent me something helpful to cope with the side effects and provide a source for questions about Ofev itself, and now I have a ton of writing prompts.

I love writing prompts, especially when it comes to writing about my experience. If you've read my blog before, you've seen that I tie things together. Sometimes I take the whole hayride to get to my point, and writing prompts make the hay ride shorter. 

I've challenged myself to use the cards to write something once daily for thirty days. I won't be posting my daily posts from these prompts to leave myself the option to write about "wounds" in this exercise. "Scars" are former "wounds" that have been processed in therapy that I'm comfortable talking about. I'm going to use the hell out of writing prompts. 

References
Methotrexate History
Methotrexate in Rheumatoid Arthritis (2013)cancer,

Healthcare vs Heath Care

 Hi, The Mighty Turtle is back and saltier than ever!  

    A lot has changed since I first launched The Mighty Turtle in 2009.  I began as a blogger and now I'm on my eighth year in stand-up comedy.  I'll be performing locally in California until around the fall.  You can also catch me on my monthly Zoom show, "Live! And Still Here Comedy Hour" on the 3rd Saturday of each month at 4:30 Pacific Time and my forthcoming podcast, "Yes, I'm Still Here". 

    I grew tired of WordPress's weird-ass glitches, so I simplified my life by joining Blogspot.  Thanks for following me here. Yes, I did wipe the original blog out of existence because the things that helped me in 2009 are outdated and I'm a much better writer.   I have saved posts and will be reposting them in an updated version.  No one should have to filter through that crap to get helpful information.  

    The subject matter of "The Mighty Turtle",  has always been about my adventures through healthcare with private insurance and veterans healthcare, and now it's new and improved.  I hope you find my work helpful, stress-relieving, and funny.  My motto is, "Laugh at What Scares Me".  

    I'd like to clarify the use of the terms, "health care" and "healthcare".  You may already know this, but I didn't the difference between the uses.  

Healthcare:  (noun or adjective) The system of services.   

Health Care: (noun) The actions of a person getting healthcare.  

    Which has the feel of this quote, "In the dictionary under redundant it says, "see redundant." - Robin Williams "Live at the Met".

    Scleroderma and sarcoidosis will be discussed, cussed at, and joked about.   Both are progressive, degenerative diseases that kill people.  I've been living with both for 27 years. I have an entire stand-up bit about how bad the name scleroderma is for marketing. 

    Now that we've got our technical jargon figured out, let's get to my disclaimer.  

In no way do I intend to minimize the horror of any stage of illnesses.  

    Humor is a great way to get people to relax and remember what's being said and I have used it as a tool for the past 27 years to teach doctors, nurses, and caregivers about what I have experienced.  I do not say that I have taught patients - they already know.  But I do hope to give patients of any chronic illness hope that they can survive.  

    When I was a kid and I had problems, I would think about the next day and how much it would be better.  Eventually, I used it to envision my future.  It didn't make my illness any easier, but it helped my brain cope along with mountains of antidepressants and decades of therapy.  

    People with rare illnesses feel isolated, but we are not alone.  After my diagnosis of sarcoidosis, I discovered that people with other diagnoses have similar symptoms and every one of us experiences the stages of grief.  In fact, when it's chronic, we cycle through these stages as one complication is managed and another one appears.  So if you do not have what I have, you'll most likely relate to some of my experiences.  When that happens, just replace what I have with what you have, and then it will feel more like we are in this together- because we are.  

    My secret to surviving?  Your guess is as good as mine, unless somehow crossing my fingers and repeating the mantra, "Don't die, don't die", is a big secret.  In no way do I wish to minimize the actual horror people experience.  I'm just here to make you laugh at what scares me.  

Thanks for reading!

Karen

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Raynaud's and Viagra

*Please Note: Every highlighted mention of Raynaud's goes to different websites. Please visit each one if you have time.

A friend on Twitter asked how Viagra helps me. I'll start with how Viagra became part of my Raynaud's treatment. Please scroll to the last paragraph if you would like "The Short Answer". It's okay, I will never know.
In 2006, I was hospitalized because the blood flow to my left thumb had stopped due to the spasm caused by Raynauds. My thumb quickly become infected and because of my history of MRSA, I went to the ER. I saw my regular pulmonologist once I was admitted into the hospital. Not to brag but he did develop a treatment protocol based on my hospital stay. He put me on vasodialtor so strong I had to reside in the Cardiac unit at UCLA for constant monitoring. The medication opened every vessel in my body and there was a very high risk of an immediate drop in blood pressure and sudden death, thus the need for monitoring. This treatment allowed blood flow back into my thumb & with an additional treatment with two IV antibiotics, the infection cleared and the wound healed. I had dodged the gangrene bullet. One of many revelations of this hospital stay was that the digital sympathecotmy I had was no longer effective. This risk I took far too lightly in 1996 when I elected to have the surgery.
There were some hurdles to overcome regarding the treatment plan of Raynaud's as an outpatient. One good thing about being an inpatient is your doctor can try meds while in the hospital, outpatient formularity is another can of worms. Rovatio seemed like a great medication, but my pulmonologist could not make that happen at the time because it was only allowed for treatment of PAH or Pulmonary Arterial Hypertension, which thankfully, I do not have. So the next drug of choice was Viagra.
The insurance I had at the time answered that request with a resounding "Oh HELL no." Despite intial denial, my rheumatologist and pulmonologist worked together to show why this was the only option to prevent further hospitalization- or in other words, "The Viagra option will cost less than denial of medication." Let's face it, when it comes to private insurance, you don't need to prove the efficacy of a medication, you have to prove it will save MONEY, not the patient. {Side note: this is why I have elected to use my Veteran's benefits and Medicare. You would be surprised how much easier it is to get around formulary restrictions when your healthcare is "socialized" like the VA- but that's a whole other topic.}

So, that's how I intially got Viagra with private insurance to treat my severe Raynaud's, but how did I get the VA to dispense Viagra to a female?

Back in 2005, before my Sarcoidosis diagnosis, my rheumatologist at the VA had no idea how to treat my increasing symptoms of what he thought was only Scleroderma. Luckily, my ex-husband and I owned our own business and we had what some medical professionals called, "Golden Insurance". My rheumatologist at the VA referred me to his collegue at UCLA Medical center. ( Later, I learned there is a thing called Managed Care through the VA which allows an outside physician provided by your own expense, to make recommendations to your primary care physician at the VA. Again- a whole other topic}

Once the "golden insurance" agreed to dispense Viagra, things went smooth for a while.
When our company went under, I went back to the VA. By then I was on Remicade with methotrexate for Sarcoidosis and Scleroderma. Remicade is not the first option in the formulary for treatment of Sarcoidosis and Scleroderma. Had I not been on Remicade already, two other medications would have had to be tried and then have failed before Remicade would be considered an option by the VA's formulary. Here is how i got around it: In order to put me on the meds in their formuary, I would have to be entirely detoxed of Remicade. By doing so, risked a major flare based on my history. I call it the "If it ain't broke, don't fix it" rationale.

Viagra was a bit of a challenge, but my rheumatologist at the VA was able to explain that Viagra significantly improved my circulation. More studies had circulated about the success of Viagra to treat Raynaud's present day, but back in '07- not so much. I still get plenty of weird looks when I pick up my script at the pharmacy, but I use the opportunity to enlighten the community that Viagra is not just "boner" medicine. Honestly, it's rediculous. It's considered a recreational drug by the VA. Truth is, if people were not so uptight and realized that a healthy sex life is a part of a healthy lifestyle, there would be nuch less miserey in this country. (Again- a whole other topic to cover!)
Now to answer the question of my twitter firend. How has Viagra benefitted my management of Raynaud's symptoms?
First of all, this is what works for me. Talk to your doctor about how you manage your Viagra.
I am prescribed 25mg of Viagra 4 times a day. On days I exercise, I do not feel I require all four doses, however there may be parts of my body I can't see such as my esophagus or internal organs experiencing Raynaud's symproms. I do not skip doses. I made that mistake with Nexium and now I have a scar tissue lined esophagus with no peristatlic movement. Yep," hot-dog down a hallway" style as chewed bits of food go down my throat.

Viagra helps a great deal, but it is not a cure all. It will not work if I do not make extra efforts of prevention. Again, Viagra helps manage Raynaud's. I just can't stress that enough.
In the morning when I get out of bed, especially in fall, winter or when staying places that have air-conditioning; Raynaud's starts first thing in the morning. I keep Viagra by my bed, set my alarm and take it before I am have to get out of bed. I take my 1st Viagra of the day and crawl back under my covers. I think it allows the vessles to dialate so that when I get out of bed, the ice cold feeling does not set in as soon as I step onto the cold floor. A great thing to do would be to get up immediatly and start moving but that can backfire sometimes if the medication hasn't had time to start working.
Once the meds have been in my system long enough, it makes it so much easier to get ready in the morning. A shower can sometimes make my hands feel like hamburger, but the Viagra helps prevent that. Once I am dressed, Viagra is not the only thing that helps me manage my Raynaud's.
Viagra is short acting, there are preventative steps to prevent a Raynaud's attack between doses. Here are mine:

1. Dress in layers. No matter what the temperature is, I always have three layers of thin clothing on my torso. My style is undershirt (long sleeved or tank top), overshirt (my "top or blouse"), jacket (zip up hoodie, blazer or heavy jacket)
2. NO Caffiene. Okay, I break this rule every morning because when my Niphedpine and Viagra Kick in together it keeps away my headaches. (This is my excuse, there are many others, but this one is mine!) Tea is a great alternative, but rememeber there is caffeene in decafinnated tea and there's always the variable of how sensitive I am to caffeene based on the weather, my stress levels or way the wind is blowing. Moderation is the key here. A small amount of something is ok for me, but it may not be for you. Use your melon.
3. When I feel a Raynaud's attack coming on, I get warm. Here are some evasive actions I have taken in weird places:
-If at a Day Spa- get in the Sauna
-Restroom hand dryer. I do love this one.
-Get in a warm car.
-If I'm with someone, I ask to borrow their jacket or any extra clothing to get around my torso, covering my hands is not enough. I will ask them to put their hands around mine. (A little awkward during a first date)
-If I am alone, I am not kidding-I pull my arms inside my shirt and stick my hands in my armpits. I know, ewww- but it works.
- I keep air activated hand warmers handy. I never apply it directly to skin experiencing the blood loss. I put the heated warmer or hot towel on my wrists. It warms the blood traveling to the constricted vessels and seems to help the spasm relax.
-VERY IMPORTANT- I never, ever apply something hot directly to blood deficient skin. It can cause a burn that could blister.
-Warm Water. I do not personally like this method. It works for some, but I have limited temperature sensing ability- especially in my fingers. Water can go from tempid to hot quickly before I can feel it. If you use this methid, be very careful.
-Exercise. This is the best thing that has helped me with Raynaud's, depression and pain management. I started easy woth simple breathing exercises, moved on to gentle yoga, walking, Zumba and my newest thing is spinning. It is hard to stay on a steady exercise schedule. Nothing fouls me up faster than a hospital stay or flare up. (A whole other topic)
-Don't give up. Just don't The pain of tissue death or eschemia caused by Raynaud's is excruciating. Healing is just as painful. It's hard not to be overwhelmed by the pain. Do your best to hang in there. Cry, scream, cuss but by all means never throw silverware! (found that one out the hard way) Don't be afraid to ask for pain meds. Find a calm and tactful way to describe the pain. I can't emphasize enough on the calm part. Snapping usually sets me back at least an hour while waiting for meds in the hospital.
I hear this a lot: "You don't need anything stronger."
My dream reply is, "Okay, go outside, look for the roughest asphalt you can find or break some glass, press your knuckles into it and scrape up and down as long as you can stand it. Then come in and if you let me pour lemon juice on your knuckes. Then I will take you at your word that I don't need stronger pain meds." I would not recommend this approach, but wouldn't it be great to actually SAY it?!!
Well that was my long answer to a short question from my friend, @MsUnProfessional on Twitter. Thank you for asking. The short answer is Viagra helps manage Raynaud's, prevent attacks and requires the patient to be proactive to be truely effective.

For more information:

The First Year-Scleroderma: An essential guide for the newly diagnosed. (nook)
By Karen Gottesman & Daniel Furst
Google Books

Sildenafil in Treatment of Raynaud's (2005)

What's With The Turtle?

 Why Turtle, you ask?

1. It's a whole lot easier to spell and remember than any greek named chronic illness.

2. Thousands of Ridley Turtles lay their eggs at the same time. When millions of eggs hatch, their numbers overwhelm their predators which makes them more likely to survive. When you look at each autoimmune disease, our numbers are small. If you combine the number of people worldwide with autoimmune diseases the numbers are overwhelming. We are all in this together, and together we are stronger.

3. Sea turtles are cool.  The technical term is, "Totes Adorbs"

Pssst.... Check This Out...

Hi everyone. Thank you for continuing to read my blog. I will soon have an address change. So far only friends and family have seen this. Please remember, this is a work in progress. I look forward to your feedback- please be gentle, but please more than anything- be honest. When I do a new post, I will go all social network crazy, but before I do, I want to share this with those who have been following my blog. Without you, my family and friends I would not have the inspiration to grow this. Please read the article that was published elsewhere and got Mary Bono Mack to block me on Twitter. If she represents your district, be sure to tell her hi. Also, ask her if she'll ever have an office in California.

The Mighty Turtle: Tales of Scleroderma, Sarcoidosis and Box Wine.

Thank you.

EVERYONE Deserves the Health Care Dick Cheney & I Have.

..."Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore."
Emma Lazarus

Based on the cheers I heard about letting the uninsured die during the Tea Party Debate, I wonder if they would have led a protest against Emma Lazarus' poem.

I mention Dick Cheney, because I saw that he was wearing his heart in his blazer due to the failure of his own heart. I have never liked the man. Yes, we have met. He wouldn't remember. It was briefly while I was in the Navy. It's no secret I'm not fond of him, but I would never wish his or anyone's death.

I also mention him because many die of heart failure every year. How many are given an opportunity to have a portable, external pump 24/7? We'll get back to that.

Let's talk about my health care. In 1996, I had to fight for Veteran's health benefits and won. I started in 1994 and I am one of the lucky ones. I wrote to my Representative in Washington and magically, I was 100% service connection disabled. (Thank you Representative of La Crosse, WI in 1996. I apologize for not remembering your name) When awarded my Veteran's benefits, I called the VA and asked if the TV show, 20/20 would be knocking at my door to do an expose or something. After the government shut down of 1995, it was crazy times. To explain my benefits, here's my latest post on Google Plus and Facebook.

"EVERYONE deserves the medical care I get. I will be at Rheumatolgy at the VA today to pick up my records for my Rheumatologist in LA. I remember every day how lucky I am. May everyone soon have socialized healthcare like me. I'm able to see the best specialists at UCLA because of Medicare. My specialists make recommendations to the VA, who actually sent me to UCLA because they didn't know what to do with me. At the VA all my medications are covered. I am one of the lucky ones. Because of The VA and Medicare, my diseases are stabilized after 16 years, I have a good prognosis. EVERYONE should have access to such great care. EVERYONE. I served so I could go to college and get out of "Dodge". The truth is, not everyone can serve, and their contributions are important. My uninsured friends are priceless. They deserve great care just as much as I do."

So, why do Dick Cheney and I have health care, when so many others don't? I feel as though we are the "storied pomp", in Emma Lazarus' poem, but we are not. Everyone deserves the health care we get. I am confident that if I have heart failure, I would fight my ass off to get a portable unit. Not because I can afford that, but because VA Hospitals are teaching hospitals. You get fresh minds mixed with the brilliant experience and knowledge of the residents. I have seen many cases and experienced first hand care where money is not a factor. I would be careless to not mention they do have a medication formulary, but I have found ways around that to get what I need- and I'm happy to share how if anyone needs it.

So why does Dick Cheney get a heart pump and I get infusions without having to try two other medications and have them fail before I get my beloved Remicade?

I could speculate and make jokes, but I honestly have no idea. I have felt massive amounts of guilt watching friends and family try to make it without insurance. We are Americans- we're supposed to be the good guys. I grew up believing we stand for and with others who can't do it on their own. If I were Karen, the manicurist, I would've died in child birth because I wouldn't have had my magic letter. That's right, a magic letter.

When I was pregnant in 2003-04, the VA did and still does not deliver babies. I received a letter in the mail that stated something like, "The VA will pay for all medical care related to the health of this veteran regarding her current condition." When my blood pressure had become so high that I began to see orange spots, my OB/GYN sent me to Mary Birch Hospital in San Diego. Seventy two hours later, after shots of steroids and my organs began to fail, my son was delivered by C-section.

There is too much to that story to include all the details in this entry, but two things stick out.

1. I shared a semi private room with a woman my age in the same condition. Both of us were given steroid injections. After my 1st painful injection, I asked the nurse to put it in my IV. The next round of shots came and it was done. No question asked. I told my roommate to ask for the same. She did. They told her her insurance wouldn't allow it. (record scratch stop) Yes, a woman who needed to be kept calm because her blood pressure was dangerously high, had to be put through frequent painful injections. Imagine sitting in comfort while listening to someone cry because they are in so much pain- that could have been avoided. Did I deserve better treatment? No. I had the equivalent of a blank check. What Karen needed, Karen got. Meanwhile, my equal in the room next to me had to suffer because some asshole paper pusher decided she didn't need to feel comfortable. She could endure that pain. Both of us had HELLP Syndrome.

2. Three years later, I was in an emergency room at a public hospital, not a VA hospital because my ex-husband and I had a business. I was in charge of picking insurance for our family and employees. I heard more than one doctor call it "Golden Insurance". It's what got me in the door at UCLA and medicare makes it possible for me to keep going back to UCLA.

In the ER, the nurse assigned to me, shared her own experience with HELLP Syndrome. She had the exact symptoms I had, without the happy ending. Her insurance required her husband to drive her an extra hour after going completely blind because of her blood pressure while she was pregnant. The ER they were assigned was not equipped to handle her condition. She lost her baby. She continues to work as a nurse to keep her family insured. She has to, to stay alive. She needs heart medication and frequent treatment by a cardiologist. I couldn't say it, but all I could think was how unfair it was. Life is not supposed to be fair, but no one should be denied the care they need because of money. NO ONE. She lost her baby at 32 weeks and was in the ground, while my son- also born at 32 weeks, was at home getting ready to go camping.

So, I ask again, are Dick Cheney and I of more value than those two women above? Are we worth more than my friend Chelle? Are we worth more than Steph and Jennifer, Chelle mentions in the video below? No. But if I were Karen; the manicurist and he Dick; the retired electrician we would be both be dead.

Make time to watch Chelle's video.
Thank you.

Where Were You When You Found Nirvana?

For the duration of my short life of 40 years, my biggest greatest love has always been music. I played guitar (poorly). I was a listener. My high school sweetheart was a musician. Music has and still does soothe me in my most stressful of times. When I was pregnant, Voodoo Child (slight Return) by Jimi Hendrix would actually stop my heartburn. There is no memory I can recall without music.

In 1992, my ship was in port in Bahrain. I hated my job. I was locked indoors for 12 hours a day inside a communication "shack" on the ship. A big change from my last ship where I was in "Deck" Divison. Sure, it was long hours of chipping paint, sanding, priming and painting again- Which explains my hate of rust, but I digress. I was outdoors all day. My job was to work on a small boat mounted on a big ship floating in the middle of the ocean. Being in the shack all day made me wish for those days outside, chipping paint.

While our ship was in port in Bahrain, I would go on base to the pool. I'd swim laps, spend an hour in the gym, shower and head to the only club on base. It wasn't terrible. I had weird hours and worked nights frequently, leaving some days free to get my outdoor fix. I found my routine.

One day at the club, I was standing in line to order my usual shrimp, fries and Miller Lite combo. I was coming off of a night watch so I was there at lunchtime. No Jump! Jump! Jump! seeping in from the outside, just like lunchtime at the local pub. Suddenly, I heard this wonderful sound coming from the TV over the bar across the room. It not very loud, so I had to leave my place in line and cross the room. The sound was gritty, it was raw, I could feel it and it was fucking beautiful.

I just stood at the bar and watched. I only remember scattered parts of the black and white video, but do I remember just sitting there, listening in awe. At the end of the video, I went to the store and bough the CD. I don't remember if I even ate that day.

Today, millions of people will say Nirvana changed their life. Nirvana re-opened my mind to the world of music for me. I had grown so tired of the new music that was coming out that all I would listen to is David Bowie, Jimi Hendrix and "old" Metallica. I could finally join the 90's because the heavens opened up, a chorus of angels sang and it was Nirvana.

Today, I'm going to watch the Nirvana special with my 7 year old son on MTV. I will tell him about the bands, the clothes and the days when MTV used to play music. Of course he will ask about the smoking and if we ever really showered. Maybe he will finally understand the blue flannel shirt I wear while I'm writing. I bought it in 1993 for $5.00. It still looks good on me. I call it my thinking flannel. My little piece of Nirvana that when worn, brings out my teen spirit.

It's strange only because when I was his age, my dad made me sit down and watch a documentary about Jimi Hendrix. Some families have religion. We have music and today, I'm going to share Nirvana with my son. Here we are now, entertain us.

A Moment Off Topic

For those of you who follow me on Twitter, this afternoon and tonight you may have read tweets and retweets regarding the execution of Troy Davis. I am usually not shy about expressing my opinions or political leanings, but I do know the topic of the death penalty can be a deal breaker for many.

Thank you for continuing to follow and read my blog whether we agree or not. Here is not the place to defend my position. I just really wanted to thank those who hung in there while I expressed my position.

Gratefully,

Karen Vasquez

PS: If you do want to know my position, there will be a post about it- Just not here. This is where we unite to raise awareness and help one another. Many Thanks.

Sex, Scleroderma, Sarcoidosis and Chocolate Donuts.

This has nothing to do with age. Since my diagnosis of Scleroderma in 1994 and Sarcoidosis diagnosis in 2007, I have been hiding out. My body started changing all over. My flexibility disappeared overnight. I used to think I was constantly cycling through the 5 Stages of grief, but I have a new hypothesis: I think I may be a 40 year old teenager.

That's right, I think I am a teenager. Not the cool 19 year old kind either. I'm talking the 13 year old flat-chested-Are-You-There-God?-It's-Me-Margret (Judy Blume) type, except I have boobs.

Now that medication has stabilized both diseases. Health wise, I feel like the worst is over. The hurricane that was once my health has passed or I'm at least in eye of the storm. I'm living well with my invisible diseases. They are invisible unless you look closely at my hands. My elbows don't extend but my hips are starting to loosen up with the help of Anusara Yoga and Zumba. Here's another thing that's really freaking me out- it turns out I like sex.(Please note: this may or may not be a side effect of breaking up with my ex-husband and then boyfriend. A correlation? I'll have to research that one)

Autoimmune diseases can make it impossible to enjoy sex because it affects you ALL over. Well, now I like sex. As is the problem for all teenagers I too rarely get the opportunity.
Then there's another problem. Making friends. I'm learning to do that as well. When I meet someone I am just so happy to be interacting with an adult, I'll talk their ear off or overwhelm them. I was given some great advice by two good friends and as soon I figure this all out, I'll let you know. It's a work in progress. You know, I may never figure it "all" out, but I'm sure I will find some sort of middle ground.

Long story short: The last 20 years I have been hiding out, depressed and avoiding social contact because I was afraid to reach out to others while it was happening. I can't regret it because that would just make me more depressed. I have to look at it, identify it, accept it and move on. I also have 20 years of experiences to share that would curl even the straightest of hair. Sharing has been helpful for me. I hope it helps others too.
I feel like I am on the other side. This is me: I have a port-o-cath in my chest, every eight weeks I get infusions to keep me ahead of the game. If I stop exercising, there is a cost- usually an infection resulting in a hospital stay. I just experienced setting proper boundaries and I feel great about it because my house is mine again. This is my life. Friendships will come and go. The ones that remain are those that accept me with my faults as well as me learning how to be a good friend in return. As far as sex goes, oh, I'll get some- but it won't be with just anyone.

So that's it. That's my life today. Tomorrow I may freak out about a grey hair, but I'll worry about that when I see one.

Today, it's off to the dentist. Scleroderma affects teeth and gums as well. I get my teeth cleaned every 4 months thanks to that socialist organization, The Veteran's Administration. Plus I have some records of test results to pick up to bring to my specailists at UCLA, whom I am able to see thanks to that ponzi-scheme called Medicare.
Tomorrow, who knows? Maybe some sex and chocolate donuts(the Hostess kind you get at the gas station.
Now off to my Chronically Awesome Day- hope you have one as well!

Some great reading:
"Sexuality and Scleroderma" by Elaine Furst RA, MA, BSN
"Scleroderma and Dental Health" by Philip Naunert DDS
And I just can't get enough of Parry Gripp:
Best Burrito

My Wake Up Call

Today I get to hang out with my son who came home this morning singing this song that made coffee come out of my nose. Thank you Parry Grip!

Make sure you have swallowed your coffee before playing.

The Best Burrito

Have a great day!

30 things You Don't Know About My Invisible Illness

Hi everyone. I've posted answers to 30 questions about my invisible illnesses, Scleroderma and Sarcoidosis in the notes section of my FB page. Here is the link:Scleroderma, Sarcoidosis and Box Wine on FB

By the way, did you know that this week is Invisible Illness Week? No, I don't mean Snufaluffagus has the flu- it's about illnesses and disabilities that are not obvious such as trouble breathing and a whole mess of conditions you never heard of or could pronounce without help.

Thank you for reading.

Wound Care Could be Sexy. You Be The Judge

This has to do with wound care so if you are reading this over breakfast or any other meal, I suggest you finish that first before reading if you are squeamish.

It's great to be home after 4 days in the hospital for IV antibiotic treatment for cellulitis in my right foot. I was lucky enough to get to spend this evening with my son even though it was his time to be with his dad. So why am I up at 4:34am?

I just happened to get up and realized I needed a dressing change for a wound that I have had on my right hand for more than 2 months that is taking forever to heal. I had been wearing a band aid to protect it during the day and leaving it bare at night. There has really been no change over last few months until 2 days ago.

For those of you managing wound care for Raynaud's, you know this type all too well. The ulcer or pressure ulcer, like mine from repeated injury dries out, leaving not a dried blood scab, but white dead skin. Mine usually end up catching on something and start to come up and although the dried skin was basically a white scab when this happened healthy tissue would come off with it, leaving a crater the width and depth of a pencil eraser.

My usual treatment for this was Neosporin, gauze and paper tape to protect the newly exposed wound on the rim of the crater. For me, these never bleed. I am taking Viagra 4 times a day and nifedepine to maintain the blood flow to my fingers and toes, but it's not enough to supply blood flow to newly exposed tissue, which eventually dries out and falls off as the tissue begins to grow back. These craters, take months to regrow tissue to close the crater. With my conractured hands, I bump into things- usually right on the sore, prolonging the healing process.

In 1996, I was hospitalized for a gangrenous thumb on my right hand. To say it was painful was an understatement. Everyone's experience is different, but for me, the only thing that hurts worse than tissue dying, is when the tissue begins to grow back after drastic and risky meds or procedures to get blood flow to the tissue. Because of my gangrenous thumb, I still have a tiny nail bed on that thumb that has gradually become smaller over the last 15 years. In 1996, I was admitted into the VA Hospital in Madison, Wisconsin. The nurses were wonderful. They worked very hard to come up with a dressing that would help protect the wound and bring me some relief At this time, not only did I have a gangrenous thumb, I had open wounds or ulcers on eight knuckles, which were all infected. It felt like I had rubbed my knuckles on asphalt and poured lemon juice on them. One nurse tried a creme called Silvadene. The active ingredient was silver. The feeling of relief was indescribable after she applied it. My fingers felt sore, but the exposed tissue felt relief almost instantly.

The nurses working on me dressed my wounds with gauze and stockinette. I spent some time in the hospital until the wounds healed. Silvadene had never been used to treat skin ulcers from Raynaud's by anyone in that hospital. During my stay, it was used regularly. They were unable to send me home with any because it was for inpatient use only. Through the years, when I had infected ulcers I would ask for Sivadene at different treatment facilities and no one had it. I did not see anything like it until 2006.

In 2006, I had a severe attack of Raynaud's. I had been to the VA hospital near me, and my Rheumatologist there sent me to another rheumatologist at UCLA Medical center. I came to one of his clinics without an appointment. He could not see me because of his caseload and he asked me to go to the ER, so I did. I also see a pulmonologist at the VA and he was called to the ER after several doctors saw me and had no idea how to treat my condition effectively. The infection part was easy, antibiotics- but they needed to get blood flow to my fingers effectively. Viagra was still new and was just beginning to be used to treat pulmonary arterial hypertension (follow the link to learn more). My pulmonologist took an aggressive approach to get blood to my starved cells furthest from my heart. He prescribed medication that would dilate the blood vessels in my entire body so much so I needed to be monitored 24/7 on a heart monitor. I was admitted to the Geffen Cardiac Wing of UCLA medical center where I resided for 11 days.

Shortly after my admission, my fingers began to heal, but the infection in my knuckles seemed to spread all over my body. Infected ulcers started popping up on all of my knuckles, elbows and even the bridge of my nose. Infectious disease specialists were called in and they were baffled. Countless swabs and cultures were taken. Because I had been to so many countries while in the Navy, the team of doctors wanted to rule everything out. Tubes of blood were drawn every 12 hours. After a few days, I'm not even sure how many, a diagnosis was finally revealed. I had MRSA (follow the link to learn more). After years of countless infections and rounds of antibiotics, a diagnosis- finally! I was given rounds of antibiotics to treat it. The pus had stopped flowing from my knuckles. It was a beautiful thing.

While recovering and being given rounds of antibiotics while my blood vessels were being held open with medication that required me to be attached to a heart monitor around the clock, a wound nurse paid me a visit. I'm not sure if she was the first, but she was definitely the best. Instead of gauze, she used PolyMem Silver. It's a little thicker than regular gauze and has a sponge-like look and feel to it. She cut it to fit each open sore I had and secured it with a hypoallergenic surgical tape called Medipore. In addition, she gave me a bunch of sheets and tape to change the dressing on my own while in the hospital. It was for inpatient use only, and she left the dressings with me so I could change them myself while in the hospital. By the time I was ready to go home, I still had a bunch left over. I had to be monitored by a home health care nurse for a few weeks to make sure my blood pressure stayed within a normal range because I was on such a large dose of vasodilaters for such a long time and I still needed IV antibiotics. It was a very long recovery, but it was one of my best recoveries because now me and my doctors knew what to look for when diagnosing infected ulcerations.

If you have been keeping up with me on Twitter or Facebook, you know I was released from the hospital after a MRSA flare up. While there, I asked to see a wound care specialist. I wanted to see if i could get some silver gauze. She came in to see me. I described my previous experience with silver dressing. I could not remember the name of it, but she knew exactly what I was talking about. She left and came back with sheets of PolyMem Silver and a giant roll of Medipore. I almost fell over from surprise. I had been asking for it in outpatient clinics for years and no one knew what the hell IW was talking about or they had no idea how to get it. Low and behold there it was in front of me. I am wearing my PolyMem silver gauze under medipore right now over an ulcer I have had for at least 2 months. The tissue beneath the dressing is healing properly. No puss, no fuss.

Thanks for taking the tome to read about my experience. If you found this helpful, please share. This can be used for infections not related to Scleroderma. If you are having trouble with wound care, there are wound specialists out their. The secret is, knowing to ask to see one.

Observations and Musings as a Guest of "Hotel" Veteran's Hospital

If you follow me on Twitter or Face Book,you already know I was admitted as an inpatient to the Veteran's Hospital near me. It's where I get my prescriptions filled, tests done and meet with 1/2 of my treatment team.

My treatment team consists of an internist, rheumatologist and podiatrist here at the VA. The leaders of my treatment team are a rheumatologist that specializes in Scleroderma and a pulmonologist, both at UCLA medical Center who oversee my treatment and to whom I take my most acute and baffling symptoms. How do I have such a well rounded group? I could say I am one of the lucky ones, which I know I am, but I fought tooth and nail to get here. I blog about my experiences of the last 20 years of symptoms because I believe we all should be as lucky as I am when it comes to healthcare.

I am a 100% Service Connected Veteran. What does that mean? The short answer is I developed symptoms of a condition as a result of my service in the military. After that, there is no short answer.

My VA benefits are based on my health condition, not rank or time in service. The symptoms of Scleroderma were documented while on active duty. Thanks to food poisoning from a Long John Silver's take out meal, a physician at North Island Naval Air Station in San Diego observed my hands turning blue. After months of reporting my blue hands in 1993, I was no longer considered a sick bay commando, crazy or an hysterical female. It was noted in my records, tests were done at Balboa Naval Hospital with all results coming back negative. I was told to stop taking birth control pills and cut down on my caffeine intake. (At the time I did not drink coffee). Twenty years later, I still have yet to find any correlation between birth control and Raynaud's, but that's a whole other post. After my four year hitch, I moved to La Crosse, Wisconsin. The nearest VA Hospital was in Madison, 3 hours away. In October of 1994 I was diagnosed with Scleroderma based on my blood tests and one good look at my nail beds. After submitting my paperwork three times with guidance from a Veteran's Service Officer and a letter to my Wisconsin Representative, I was finally given a 100% Service Connected rating. It means I am never turned away at any VA. All medical conditions the VA does not treat directly such as pregnancy, are paid for by the VA to the doctor and hospital of my choice. Because of the VA, my son and I are still alive because I was able choose to go to the best hospital when HELLP Syndrome struck in my third trimester (which is also another post).

I am able to see the doctors at UCLA because I am have Medicare and Social Security which I began paying into when I was 15. In 2005, my rheumatologist here at the VA had run out of treatment ideas. My disease was starting to progress quickly and he referred me to a colleague at UCLA. In 2007, after years of shortness of breath being written off as just another symptom of Scleroderma, I paid a visit to UCLA ER after receiving a radiology report that recommended, "Check for Lymphoma" My pulmonolgist immediately ordered a PET scan, which tested positive in my thoracic lymph nodes. They were enlarged, which explained the difficulty breathing. A biopsy was done and behold, my Sarcoidosis diagnosis. I was immediatly given Remicade. Had I been diagnosed at the VA, I would have been forced to go the formulary route. That involved trying and the failure of three other medications before I would be given the Remicade. It turned out Remicade keeps both my Scleroderma and Sarcoidosis from getting worse and after years of trial and error, I have a good prognosis and treatment plan that is working.


For those of you applying for service connected ratings, it is not an easy path. No one should have to fight for medical care- ex-military or not. Unfortunately, it's a journey we must take. For those of you fighting; don't give up. You must be your own advocate because you are the best person for the job. Submit and resubmit requests for disability ratings. In a profit driven healthcare stem, getting the proper care has become a war with many battles. Veteran's healthcare is socialized healthcare. It works. Unfortunately,profit driven companies are gaining from the sufferings of human beings. To them, it's not about what's best for the patient. It's about how to move product. I say companies because medical practitioners and staff should make a more than fair wage. These people put in mind bending hours of study and work that is always evolving, hence the term, "Medical Practice". Companies that pay dividends to shareholders- success is measured by their bottom line, not the success of treatment. That too is also a whole other post.

Tonight, I am writing from my hospital bed at the VA and the point of this post was originally to talk about the bond between Veterans. I feel an explanation of how I am able to get such great care is important. Not just for this post, but for anyone trying to get medical coverage through the VA or any other means. This has become a more detailed post than anticipated. I have many observations and I look forward to sharing with you during my stay and after I return home.

Thank you for reading and thank you in advance if you decide to share this post.

Change You Can Believe Will Make You Pound Your Own Head Into A Table

Part I

Some things appear to be a good idea, for example; switching to decaf, using generic antiperspirant and buying the cheaper brand of dog food. Seems harmless enough. Then one day you're face to face with a pyramid of empty Red Bull cans, your cubicle smells like B.O. and your dog is crapping in your house. Let's face it; change isn't always a good idea.

Before my son's spring break last school year, my ex-husband called to tell me he thought our severely ADHD son should no longer be on medication and that we should, in his words, "take him off because of the side affects". Granted, his medication, like all medications has side effects. I too wish my child did not need medication to navigate through his busy day, but my ex-husband's idea gave me a very bad feeling. What he said was, "we should take him off his meds.", but I heard "Let’s each take a wire hanger, put 'em into them there slots in the wall and see what happens."

When my son was almost 4, his pediatrician had him evaluated by the school district for autism. It turns out,because I do not have a Master's in Psychology, but merely a Bachelor's it gave me just enough education to drive me insane thinking every little thing was a symptom of Autism. Because of his preterm birth, my son Jake and I had frequent visits to his pediatrician. While sitting in waiting rooms with my active guy, I saw others his age playing with their parents rather than attempting to dismantle the chair I was sitting in, as Jake would do. I brought toys, snacks and books, but nothing worked. We even had a special place to wait in his pediatrician’s office. Waiting with less stimuli made waiting rooms easier (for the other patients and their parents). Because of our frequent visits, sometimes more than once a week, Jake’s pediatrician saw this behavior and started preparing us for an ADHD diagnosis. She told us that he was young for medication, but it may be something we'd have to consider in the near future if he did not grow out of it. She eventually ordered an evaluation to rule out Autism. California has great programs for kids with special needs and the earlier the evaluation, the better. The school district psychologists agreed he had severe ADHD, not Autism. I was not surprised. ADHD runs in my family and because Jake was 2 months premature, it increased his chances of having it.

After Jake’s evaluation and diagnosis at age 3, I did everything I could to avoid medication. I tried every recommended behavior modification technique my pediatrician had in her arsenal. She had shared her son had ADHD and sympathized with our want to keep him off medication. Despite my efforts, I failed terribly. I say I failed because I was the one who implemented every suggestion while trying to work while my ex-husband worked longer hours. I was constantly picking him up early or having to go calm him down at pre-school during tantrums. After Jake was kicked out of his third preschool, there was one last preschool in town without a waiting list or large child to teacher ratio. It was a brand new school that had only been open a few weeks. I stopped by and spoke with the director. I was very upfront about Jake's behavior at his previous schools. She and her staff were very willing to work with our family to help Jake. They had a low ratio of four to one for Jake's age group and because it was a new facility, they did not yet have a large student population.

At his new pre-school, everyone worked hard with us to help Jake. The teachers on their break or even the director herself would come into his class at naptime and lay down with Jake until he would calm down enough to go to sleep. This allowed the teachers and aids to work undisrupted with the rest of the class. It was a short lived success. The meltdowns continued and he was starting to be a danger to other children because his tantrums were so out of control. These tantrums were not your run of the mill kicking and screaming. Although this was over four years ago, I can still see this look he would get during these fits. It was like he was looking at me, but he struggled to see me. I'll never know exactly what he felt, but when I looked at him while trying to calm him down, it was like looking at someone scrambling to hang onto the edge of a cliff, doing everything he could not to fall into the abyss. Because of the contractures of my hands, I had trouble holding onto him to keep him from hurting himself. In mid-tantrum as a last resort I would "wrestle him" to the ground and wrap him in a blanket. The weight of my body and the blanket would comfort him enough to calm down. This was too much for him to take. Keeping him off of medication now felt inhumane to me, so we finally broke own and got a prescription.

Success did not happen overnight. It took a while to get him up to the right dose. Eventually, this great kid and part time lost soul became a great kid who could adapt well to his environment. He started making friends at pre-school and napping instead of getting sent to the director's office or having to be picked up early from pre-school because of a meltdown. After the dust settled, the director of the school pulled me into her office. She knew how hard it was for me to go through with the decision to put Jake on medication, but she was expressed to me her relief as well. I will never forget her words, "I was in with him at naptime and he was calm for the first time. It was as if his mind had finally let go and allowed his body to relax." There were some tears and some hugging. I finally calmed down enough to leave her office. It wasn't the solution to our problems with ADHD; the medication was a tool to help his brain function properly.

Four years later, I expressed my concern about how bad an idea I thought taking Jake off his medication. (Wow that was a polite way to put it.) Jake was doing great in school. I did notice on non-school days, he needed some time to himself. He has separation anxiety issues left over from the divorce, but nothing that will not go away with time. I call it his peaking hour. I keep a 500 piece puzzle handy on the dinning room table and he'll wander over to it and occupy himself for at least an hour. He gets sucked into building Legos for hours at a time. He has friends who lived next door to us before we moved and they play well together. He has moments when he's grumpy, but I need my alone time every day and if I don't get it, I'm kind of a bitch. His behavior just seemed normal to me, but my ex was convinced he could manage off the medication and we should do it over Spring Break.

My ex was to have Jake for the 2 week spring break. After about 15 minutes of trying to reason with my ex-husband, I realized this crazy train was departing with or without me. I reluctantly agreed, but only under the supervision of Jake's pediatrician. My ex felt that he had a very strong argument and was not shy about telling me and my Bachelor's Degree in Psychology were no match for his friend's Master's degrees in Education and his semester of Child Development. I knew what would happen. My son's pediatrician is an MD, so I made an appointment.

This has taken a month to write so as to not sound live a revenge pice. It is not. This is at one sided account story of two parents who strongly disagree. Stay tuned for the conclusion.