Scleroderma and Homeopathic Treatment

This post began as a Facebook post, sharing the Science Babe’s, Slate article about homeopathic medicine. Then, I started talking about my own personal experience  with homeopathic treatment for scleroderma, and here we are.
Figure investigating box of hope.Please enjoy this scenic car ride to my point about my experience using homeopathic medicine.
In 1996, I received homeopathic treatment for scleroderma.  If you are considering homeopathic remedies for #scleroderma, #sarcoidosis, a chronic condition, or know someone who is, you may want to keep reading.
Homeopathic Hope
I have been there.  Having an incurable disease that very few doctors even know about, can feel hopeless.  I was there.  I was frightened and I needed something to believe.   Homeopathic medicine sounded promising. No one else had answers, why not?
 In 1996 I worked with one chiropractor using homeopathic treatments. Along with some oral selenium tablets,  she had me soak my hands in a solution of what I will call “dead fish powder”.  It was made from ground up fish bones and other stuff. Of course, my ulcers became worse. The chiropractor with a PhD in philosophy, told me the swelling meant it was working. According to her, homeopathic medicine makes everything worse before it gets better. It resulted in a MRSA infection that went undiagnosed for nine years. (And a dependence on Oxycodone/paracetamol or (Percocet). But that’s a whole other post.)
By 2005, oozing ulcers had become a normal part of my life.  Just another scleroderma complication I had learned to live with.  That same year,  my raynauds had become so acute, the routine treatment of niphedpine to relax the muscles surrounding the artery to my left thumb. offered no relief.  I was instructed by my rheumatologist, to double my dose  of niphedipine at home.  He did warn I could get a headache, which is short for:  Your head will feel like it’s been  hit by an RPG shaped like a ball-peen hammer.  Doctors use abbreviations all the time.
My pulmonologist suggested  Rovatio treatment for my #Raynauds. My doctor wanted to make sure my blood pressure was stable while taking it. There were very few published studies done on raynaud’s patients by 2005.  I did not have pulmonary hypertension, so my doctor monitored me 24/7 during the treatment to make sure my blood pressure did not plunge to dangerous levels, causing heart failure.  My pulmonologist had me admitted me to the cardiac wing of UCLA, and by cardiac wing, I mean The David Geffen one you have heard about. I was going to be a case study for raynauds treatment protocols.  (Oh, if I had a dine for every doctor who said he or she was going to put me in a medical journal…)  The patient across the hall had an artificial heart he carried with him in a suitcase while he waited for a donor heart. I also got to share a room with the original Colgate Girl. In my 20 years in hospitals, she was the only roommate I have ever liked. I do wish I had kept in touch.  She was a remarkably kind woman with the most entertaining stories.
Wait, what were we talking about?  Oh yeah- complications of scleroderma treated with from  homeopathic remedies.
The Rovatio seemed effective in bringing blood flow to my extremities, but there was another problem.  During that two week hospital stay, I had a MRSA flare. It manifested as swelling and oozy ulcers on my fingers, bridge of my nose and elbows. Raynauds had limited the blood flow, weakening the integrity of my skin, resulting in constant infections on my fingers. I had become so accustomed to my oozing wounds, and because information was limited regarding treatment of scleroderma, the oozing ulcers were just considered something I needed to learn to live with by doctors. Well at least those who weren’t specialists. I had to commute over an hour one way to get treatment and care for scleroderma from the VA, and three hours one-way to see my scleroderma specialist, Dr. Furst. So getting in my car every time my finger oozed, did not seem justifiable.
A few days into my hospital stay, my doctor wanted to know what the infection was, that seemed to be causing these oozing, painful wounds that appeared to be  spreading rapidly.  Ooze was swabbed and nothing grew. The antibiotics they threw at me were useless.   The infectious disease team did a thorough medical history.  They asked about the places I had been while in the Navy, and tests they did to link it to infectious diseases came up negative.  Then, my lab tests came back positive for a little infection known as MRSA.  That’s when my room became isolation.  It looked like a crime scene from the outside. Yellow tape with black writing was all over my door.   Anyone who entered my room, even to just deliver food, had to gown-up.
So the infectious disease doctors tried to nail down how I got it.  MRSA was in the news as the latest plague and it was popping up everywhere.  We discussed my wound care.   I have used band-aids  through the years.  Personally, I find them to be nice incubators for infections.  I used to wear up to three band-aids for one wound, which from a distance made my wounds less noticeable than a giant white gauze  pad, secured with tape around my fingers.  If you keep up with my blog, you would know how important it is to me that I do not appear sick.  So piling on band-aids seemed like a good idea.  They provided protection,but they can get gross from sweaty hands.   Then, there was this one time in California, when I was soaking my hands in some water I mixed with some powder I got from a homeopathic “doctor”.   I was doing it three times a day.  Apparently, soaking a hand with open wounds in ground up fish powder probably didn’t help.  It wasn’t sterile.  And it was left on my skin. and then I covered it with a band-aid, because you know- appearance.
I forgot to mention that when I was doing the fish powder treatment, I was visiting family and I was on mountains of Vicodin for swelling and drainage of the wounds in my fingers.  Of course, when I asked my homeopathic doctor about these obvious symptoms of infection, she told me not to worry.  That meant the toxins causing scleroderma were leaving my body.  Did you get that?  The lady with an advanced degree in philosophy, told me the yellow puss pouring out of my knuckles and finger tips was scleroderma leaving my body.  Eventually, I was seen by a doctor who said something about a negative stain staff infection.  Of course, he was a doctor and all he knew was how to prescribe antibiotics that made the oozing stop.  Well, at least for a while.  Eventually the antibiotics began to fail.  Ooze was just something I had to live with.  It did come and go through the years.
Looking back on the “fish powder fiasco”, I now know that my fingers were infected. maybe it wasn’t the fish power that caused it.  Maybe, it was that the infection had become so bad, it developed into MRSA.  Unfortunately, I can’t go back in time for a case study, so I guess we’ll just have to speculate.
Since 2005, I still get infections, but rarely.  When I get them, my doctors usually go straight to the MRSA meds after a usual antibiotic fails.  Depending on the stage of infection, sometimes they go right to the Vancomyacin.  nd then there was that time I had an infection in my foot, and the rheumatologist at the Long Beach VA, misdiagnosed me with osteomyelytis because she did not pay attention to my past medical history.  That was the time I was hospitalized for 45 days.  It was a misdiagnosis.  Better safe than sorry though, right?  (Yeah, I have nothing kind to say bout that rheumatologist.)
Look, I know how hopeful homeopathic medicine can sound after years of no answers for symptoms that question one’s own sanity.   And there are concentrations of the homeopathic remedies that are so weak, they have no physical effects, but do present a psychological benefit known as the placebo effect.  I have to be honest.  I have done things with crystals, that I believe helped.  Not because of the crystals themselves, but because of what I thought of the crystals.  It helped me to relax, which lowered my stress and I felt better, psychologically.  For weeks I held those crystals, or rocks in my hands, or would keep the in my pockets.   Those rocks made me want  to eat better and  exercise regularly, and wouldn’t you know it?  I felt better.  The rocks did nothing but give me something to believe in and that’s what helped me. But just because I felt better, that does not prove these things somehow cured me. I still have scleroderma and it is progressing.  I am eating well and exercising regularly.  Does it prove anything?  No, because it’s anecdotal:  A non-scientific account of my personal experience.  It does however, create more questions.
While research is going on, and  the wait for better treatment and a cure continues.  As we are learning through robust research, the homeopathic market continues to provide hope to the hopeless.  To be honest, I still spend  money on hope.  I keep it limited to things like beet juice or infused chocolate.  When recommends their homeopathic doctor, or I should take a trip to the vitamin aisle at Whole Foods, I use a mantra to help me accept the person’s advice gracefully. They do mean well.  So,  I gently say to myself and repeat until calm,  “You know what else is natural?  Arsenic, uranium and bullshit.”

Scleroderma Is A Terrible Name

Scleroderma is an autoimmune disease.  Healthy cells are mistaken for unhealthy ones, and the body attacks itself.  Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin.  Because of the name, people mistake scleroderma for a skin condition.

When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long.  For a long time, that was true.  Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms.  Scleroderma is different with every patient.  Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts.  Many patients die of complications of this type.  Then, there is the overlap kind.  In addition to scleroderma, a patient  can have  another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly.  Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly.  Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.

I was diagnosed in 1994, at the Madison Veteran’s Hospital.  The Veteran’s Healthcare System was originally  designed for aging men.  So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment.  They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired.   They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb.  They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions.  Yes, many people I met in the 1990’s are surprised to still see me alive.

Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it.  How do we solve this problem?  With medical provider education and patient education.  Of course, money is the biggest help because that funds research and treatment.  All of these things are happening, but we can do so much more.  Scleroderma needs better marketing.

T-shirts and teal bracelets are not enough.  A pretty color, a shirt  and accessories is not enough.  Scleroderma needs a new name and  I have the perfect name.  One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing.  I think you will agree this name, fits.

Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.

It’s easier to say, easier to remember and let’s face it, you can’t forget it.  It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey.  (By the way, did you know there are two ways to spell whisky?)   Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance?  See how easy that is?  Whiskey Tango Foxtrot.  Rolls right off the tongue.  So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive  and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot.  Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”.  End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”

 

Scleroderma
What did you think of when you first heard scleroderma? This sums it up for me

 

Scleroderma Does Ugly Things to Beautiful People

Yes.  Scleroderma does do ugly things to beautiful people, and me, too.

Photo by comedian Brendan Cooney, co-host of The Bunny Ranch at Karma Lounge. Yes, I am wearing yoga pants.

When I began this blog, my intention was to raise awareness of scleroderma.  I’m going on my sixth year with this blog, and awareness is not enough.  The truth is, scleroderma is an ugly disease.  It doesn’t directly affect breasts, and the damage done by scleroderma is shocking to those who are completely unaware.   I know, no one wants to hear that people aren’t paying attention because there is no high-level celebrity that has it, except Queen Latifah’s mom.  Here are some things not being covered, even by foundations.  Not because they don’t want to, but because they are too busy researching and assisting patients and their families.

There are so many things that bother me about awareness campaigns.  First, small independent patient communities, not affiliated with research or patient advocacy, raising money for swag to fund their advertising which includes a bunch of prayers and stupid bracelets.  I’ve had scleroderma for twenty-one years and not once has a stupid bracelet made me feel better.  How about skipping the middle man and sending that two bucks you paid to look like you made a donation or care about scleroderma, directly to research or patient advocacy.  Or maybe something like a scleroderma patient’s cleaning service.

Unless you are dying or rich, scleroderma patients do not qualify for cleaning services, without having a home health nurse.  Don’t get me wrong, many patients need full time care.  But for those who don’t, like me, the last thing I want in my house is someone dressed like a nurse, who has to stay for three hours twice a week, cleans my house half-assed because she’s there for healthcare and of course hear about all her personal problems (I’ve had this done with three “helpers”.)  The last time, when I was released from the hospital after forty-five days last year, the VA granted a home health care assistant.   Eventually,I had to schedule myself to be home three hours, twice a week so she could help me clean.  Of course, she was there for healthcare so getting her to clean was like pulling teeth, so that didn’t last long and I resumed my own cleaning. All I needed was someone to come by once a week for an hour and a half and do the heavy cleaning in my house, then get the f*ck out.  I didn’t need companionship, help dressing, eating, bathing, even though I had to stay off my foot.  Just clean the bathroom, kitchen floors, change my sheets, not even do laundry.  But no, the VA doesn’t do that.  Everyone is so busy looking for fraud, that people who could use a little help now and then have to wait until they are injured, or worse.

And then there are people who tell me, “ask your family to help.”  First of all, I live near none of my family.  I live near a health care facility qualified to take care of my medical needs.  Also, that would require me to live near my family.  One family member even told me I should try assisted living.   I get home from comedy clubs at two or three in the morning, and I drive myself.  Look I may have stayed in the hospital forty-five days, but I did not go without a booty call.  I had two during my stay. I got away with it in a hospital, because nursing stations are busy at shift change, but in assisted living,  someone’s going to notice my room mate sitting in a wheelchair outside my room for at least an hour to get the return value on  that Brazillian I pay for every month.

I’ve done my time laying around in pain waiting for medications to be developed to cure scleroderma and sarcoidosis.  The diseases have  run their course.  My lungs are scarred, I have lost mobility in my hands and I still deal with chronic pain.  For me, the worst is over.  I no longer wish to raise awareness of scleroderma.  I want to make patients aware that if they can just keep fighting, and  remember to start fighting again when giving up (I’ve given up plenty of times), that there can be life with scleroderma.  Right now, you might be fighting to breathe.  There is a chance you can make it through this, and if you do, there is so much life to live.  Look, there will always be a time when our bodies will tell us we are ready to move on, that it is time to not give up, but accept that it’s time to leave this life behind, scleroderma or not.  For those patients out there wondering how they can live with the damage, it can be done.  It will take work, there will be disappointment and there will be some success.

The only thing I hate more than having scleroderma, is when someone tells me they are sorry.  I know people don’ really know how to react, and maybe patients appreciate it when hear someone is sorry they have scleroderma, but not me.  It doesn’t anger me, it enrages me.  It’s not that I don’t appreciate them feeling something, but sympathy?  I’m not dead yet, Mother F*cker!  And it usually in a doctor’s office where I am trying to get routine care so I can maintain my health.  I don’t want sympathy from a healthcare provider.  How about some empowerment with care that encourages me to be active?   Luckily, I get that at The West Los Angeles VA Hospital.  I also got it at Loma Linda.  Long Beach sucked.  (That’s my review of those three hospitals.)

So that is my ugly, honest rant.  It’s how I really feel about fundraiser drives to support advertising and teal-wearing and showing pictures people without scleroderma will scroll past on Facebook because it is so shocking.  Hell, I scroll past a picture of a scleroderma patient clearly suffering.  It sucks.  Not as much as having the scleroderma, but it’s definitly hurting the fundraising.  Save the Tatas, raises money because people love to see boobs.  Groups who post the worst and seek sympathy, shock people away from  learning about scleroderma, because to someone who doesn’t have it, it’s hard to see.   I know, it’s not what any of us wants to hear, but does that make it any less true?

 

I Hate The Documentary, Project Scleroderma: Beneath The Surface

Prologue
Like most of my posts, I start with a topic, then go  ‘off-road’ with a personal related story and get back on track.   I have tried to change that, but this is after all, my blog.  Enjoy the crazy!

I hate the documentary called Project Scleroderma: Beneath The Surfce
For the longest time, when I  heard the name, my heart would swell with feelings of resentment. I justified these feelings by telling myself this documentary about scleroderma, only showed worst-case scenarios.  That people live well with scleroderma if they just stay on top of symptoms. My justification is one big fat lie I tell myself to avoid the reality of what is happening to my body.

See Project Scleroderma. Learn about scleroderma and share link with friends.

Since my diagnosis in 1994, I have said a resounding, “NO”, to scleroderma.  My body, my mind and my heart scream “NOT ME”.  I am not going to be that club-handed and disfigured patient lying in pain that is the face of scleroderma.  I am certainly not scleroderma.  The truth is, that is exactly scleroderma and that is something I fight to avoid facing.  After more than twenty years of treatment for depression, I have learned there is nothing that will make me face the inevitable hardening of my lungs and eventual death.  Hold on, there is one thing that will pull me out of this depression and off of these meds: if it stopped and the damage is reversed.  (Hey, a girl can dream.)

I used to lock myself in my bathroom and scream silently, wishing the scleroderma would just stop.  Have you ever have those nightmares where you scream and there’s no sound?  Yeah, that.  Only it’s real.  And when the scleroderma stops in reality,  I’ll be dead.

Is it so terrible I live in denial that something is grotesquely disfiguring my body as it slowly kills me?  No, it’s not terrible at all.  (Lala Lala Lala I can’t hear you!) Because that is how I get up every morning.  I am always surprised when I see my hands every day.  I have to ignore my hands to get out of bed.  I can’t accept that God has a plan.  Because if God does have a plan, I have nothing kind to say about God..  I joke about making margaritas on the Handbasket to Hell, Because if there is a God, and if we meet, I would try to kill him/her.  So I prefer to believe there is no god.  It makes the most sense.  And if you’d like to tell me that when I am faced with death that I’ll start praying, I will tell you that is bulls&*!.  I have nearly died three times that I know of, and been clinically dead once.  There is no bright light.  And dying is actually quite relaxing when it’s not painful.  I speak from experience.  You know what terrifies me more than death?  Looking sick and in pain.  Not the kind of constant chronic pain people with chronic illnesses are forced to suffer because a bunch of non-ill people abuse pain medication.  I dread the pain of my body rotting and the feeling of the nerve endings dying.  If you have never felt a piece of your own body as it turns black and dies, I don’t recommend it.  I was in the hospital with a rotting thumb and nurses refused to contact my doctor as I begged for pain medication.  It wasn’t invisible.  They could see the necrotic tissue of my thumb die before their eyes. But according to them, I was just being hysterical.  They had never heard of such a thing.  And I also heard them say that I probably did it to myself to get pain medication.   And here are some more of the hits:  “Her thumb isn’t rotting off.”  and my favorite, “It’s all in her head.” That sore turned gangrenous, then tissue around it started to die.  An arteriogram had been done before I went into the hospital and it showed that the arteries to my thumb were completely choked off.   My thumb was getting blood back-flowing from the vein.  (Who are they going to believe?  Their own eyes? Not a chance.)

Oh, and if you are reading this and you are a nurse, I can hear you when you think I can’t. I love nurses, but I have met some real winners.

The funny part of that story, is that was in 1996 at a Veteran’s Hospital.  After loosing part of my thumb, my care was transferred to the Madison Veteran’s hospital, where they stepped up and began treating my illness.  But of course, the problem of nurses acting above their pay grade still happened recently In 2013, I heard similar statements at the nurse’s station at the Long Beach Veteran’s Hospital in the long term care unit.  The only difference is, we can add,”One day she’s going to wake up and not be able to move.”

Because I guess I was not having a reaction from 30 days of morphine, as evidenced  by my chart from prior hospital stays when I had a rash, the medication Benedryll was given to me in a higher dose, and the rash was quickly resolved.  The “wake up and not move”, were one of many comments of nurses who insisted on their own expertise based on their time working in a glorified nursing home.   They were mostly overworked BSN’s who did the jobs of CNA’s.  I actually had to teach them how to change the needle on my port-o-cath.   When I refused an IV into may arm and after one nurse finally figured out a patient should not be teaching nurse how to do their job, they got someone in to show them.  This manager was pretty upset when he found out what was going on.  Also, many nurses shared their beliefin the power of prayer.  In the beginning, I thanked them for their well wishes, and politely remind them occasionally that I don’t believe in God.  One nurse even told me I wasn’t taking good care of myself because I did not believe in God.  I do love nurses, but I love freedom from religion more.  I have made more than one nurse cry after they have put my life in jeopardy,  then I think of nurses who refuse to listen,  I have dealt with through the years and my guilt just disappears.  I don’t make nurses (and some doctors) cry for my entertainment.  It’s usually after they have made a careless mistake, or base my care on their experience with nothing related to the symptoms I have.  That and I hate them telling me that God loves me and has a plan, especially after I tell them I am an atheist.  It’s so disrespectful.  I don’t try to talk them out of their faith.  Why do they insist on talking me out of my lack of faith?  I guess that’s a whole other post.

Wow.  That was a rant.  I have left it in so you can get a glimmer of the judgement and doubt by practitioners, family and friends, scleroderma patients get:  This post talks about my time after scleroderma was diagnosed.  I can’t imagine what it would be like to go years with mysterious symptoms and being told it’s all in my head.  Oh wait, I did.  Again, whole other post.

I avoid things that point out the reality of scleroderma.  It’s what keeps me from drinking my  bottle the liquid morphine I keep.  Not to kill myself, but for pain.  I want to numb myself from feeling everything that has been damaged to my body.  Luckily, I love my family and friends and even more, I love myself too much to check out or keep myself over-medicated. (A little narcissism every now and then can be healthy.)

I greatly admire those who lead and participate in support groups.  I cope by paying attention to my symptoms as they come, getting treatment and finding things to do that have nothing to do with scleroderma.  I don’t participate in support groups.  I will assist in raising funds for patient support, I just choose not to get my support from other patients.  It’s not because they are fellow patients.  It’s because I do not want scleroderma to be the reason we hang out, and our only topic of conversation.    You may think that is selfish.  Maybe it is.  But it’s what works for me.  I share stuff in my blog.  That’s how I am able to help others.   It’s what works for me.

Project Scleroderma is a wonderful project that is going to help present and future scleroderma patients.   It’s well made, full of the horrifying reality of what scleroderma does to the human body.  And that’s why I can’t watch it, yet.

In 1999, I nearly died of depression.  I didn’t realize it, but I had stopped eating.  It was triggered by a failed study of treatment.  I was forced to see that scleroderma was going to be a long, slow and painful death.  It took years of therapy, medication and had a large role in what lead to my divorce.  And here I am, still alive.

Yesterday, I hung out with my son and played Smash Brothers on our Wii U.  The day before that, we went to Disneyland because we have annual passes.  And the day before that, on Valentines Day; my son and I went on a strenuous and beautiful hike in Griffith Park.  I have an amazing life that I would not trade for anything.  In September, my brother is getting married to an amazing woman I love dearly.  And I can’t wait to see my sister, brother in-law and nephew who will be here for the big party.   There is nothing that will motivate me more to keep fighting, than the life I have ahead of me.  And it won’t be easy.  I might get my heat broken a few times.  I’m going to have to keep going to auditions after being rejected.  After bombing during a set I wll convince myself to listen to the recording of me dying on stage to improve my set.  I’m going to have to do the dishes instead of throwing them into the trash.  I can drive seventy-five miles one way to pick up my son.  The stuff that people worry about- the medical stuff; to me that’s just like brushing my teeth.  A trip to the emergency department is just like a trip to the dentist.  Having to correct a pharmacist and tell him or her I will not cut my dose of Viagra to save the Veteran’s Administration and in prior cases, insurance companies, money, well that’s just fun.  It’s one of those silly, petty things that allows me to feel like I’m in control of something.  And of course, I horrify my family sometimes when I use humor to cope with what scares me.

Many of those involved with Project Scleroderma:  Beneath The Surface, have witness first hand as their loved one died while they could do nothing.  There is nothing anyone can do to stop death, once the symptoms of scleroderma become fatal.  Nothing except treat symptoms as they appear and slow progression with immunosuppressants. But times, they are a changin’.   (Immunize your damn kids, by the way. Please and we on immunosuppresants thank you.)

Twenty years ago, people diagnosed with scleroderma were told to get their affairs in order and prepare for the worst.  Thanks to research that has brought about treatment by non-profit organization.  This of course is not a cure, but we’re getting there.  Scleroderma is different in every patient.  There are amazing treatments available to patients whose doctors know about them.  (See the problem there?  We need to get the word out.)  We need to get doctors educated about scleroerma so they can offer their patients the bet possible outcome, while they wait for a cure.
Honestly, I don’t believe there will even be a cure in my lifetime.
I dare you to prove me wrong.
(Seriously.  I’m tired of being right most of the time.) 

Epilogue
Someday, I will watch the entire Project Scleroderma, documentary. Right now, I am busy coping with the progression and damage scleroderma has done to my body by simply getting out and doing what I want .  I usually don’t like to ask others to do what I wouldn’t, but I’ve lived with this for over twenty years.  I think I’ve earned a pass.  The Scleroderma Project, is a reality I don’t wish to face.  I will be forced to face it soon enough when my lungs stop working.  For now, I’m going to proof this, maybe do a Brazil Butt-Lift work out.  (Just because my hands are messed up, that doesn’t mean I can’t have a fine ass.) Then go on a long hike while listening to Foo Fighters.  So while I’m busy living, please watch and recommend Project Scleroderma.  Share what you learn, what you have done or what you would like to do, for patients with scleroderma.

You can find Project Scleroderma on Facebook,    Twitter  Website

To learn more about scleroderma:

NIHS: Facts about scleroderma.

Scleroderma Research Foundation, a partner of The Scleroderma Project

Scleroderma Foundation

Federation of European Scleroderma Associations Facebook  Website

Scleroderma Care Foundation of Trinidad and Tobago

If I forgot anyone, please send me a message on Facebook – Karen

And now, a shameless plug:
I’ll be at The World Famous Comedy Store  February 25th.  Because laughing has only made me stronger.  And, I could really use some butts in the seats.  Click here and get your tickets at the door.  $10.00 two drink minimum.  This is up a flight of stairs.  Visit my comedian FB page, hit “like” for information about upcoming shows.

Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as pulmonary fibrosis.  


Lesson Learned.

After spending 45 days in the hospital to save my foot, I am now faced with the challenge of returning to exercise on a routine basis.  As much as I would like to go back to Krav Maga class, this will not be happening anytime in the near future.  I blame the horrid infection of my foot on just thinking about training for a 5k.  All kidding aside, the infection was bound to occur, but it may have been prevented from such a drastic course with proper shoes.  I thought because I was feeling so great, I could take a chance and wear something more stylish.  That was my mistake.   Now, I have this wonderful reminder to not push that good feeling.  Message received, Universe.  Message received.  (You can’t see this, but I just looked at the sky, raised my hand, and impotently shook my fist in rage.)

 

 

Back to one, deep breath

One of my biggest lessons, of many from this past hospital stay is there is no such thing as a last chance for me.  I changed my way of thinking of my hospital stays.  I have always understood that they will be part of my life, but when I would leave, I would think, “This stay will be the last time.”

 

This time, I had enough time to realize that there were so many things I could not anticipate, that I cannot think of any time in the hospital as my last time, and my recovery my last chance.  Yes, after 20 years I understand that I will get knocked down, but I’ll get up again.

 

Hope helps, but knowing I’m going to recover helps more, because it’s not a matter of “if” it’s “when” I feel better.

Of course I cannot predict the future, but I can have a positive outlook.  Not unrealistic, just more than hopeful.   never hope I’m going to get well.  I know I am going to get well.  And even though we never really “know” everything, it doesn’t hurt to act as if I will have a full recovery.  People would say to me  “I hope this gets better for you.”  My reply was usually, “I know it will get better.”

 

Positive thinking helps, but I must do the work it requires to get better.  There is nothing wrong with being stubborn, and I am living proof.

 

So, about the exercise…

I’m working with a trainer to build my strength from the inside out.  Along with strengthening the large muscles, I must work on the small ones as well, especially my core and upper body. Right now, I am using light weights and rubber bands.  These exercises may look small, but I can feel he work I’m doing.  The exercises I do are no impact where my feet are concerned, and since I have lots of work to do on my core, there is plenty to keep me busy until I can do a full plank again.

 

It’s not easy, it probably won’t be the last time I need to restart, but starting again is so worth it.

Exercise, Scleroderma and Krav Maga

I look like I’m smiling- that’s the scleroderma mouth thing- she is really pulling my hair. Don’t let our petite frames fool you:  Dynamite comes in small packages.  Photo: Jennifer Jones 

 

I made a video last night after Krav Maga Class.  Short story long: I injure myself more doing daily activities, than when I exercise or train with the supervision of a professional.

 

When my range of motion was lost, I had to relearn simple things like sitting on the floor and getting back up.  It’s a long list and as I become more active, I run into some activity I need to trouble shoot to perform.  Luckily, there are people who are trained to help!

I made a video. Yep, this picture has nothing to do with the content of the video. I just thought a picture with my dog would help me get more viewers. This video is about exercise. I exercise so my lungs keep moving, and my whole body is strong enough to take whatever else scleroderma and sarcoidosis throw at me.

Watch:

Avoid Injury While Exercising by Working with Professionals

 

 

 

Scleroderma Awareness Day

 

 

As a patient, I don’t need a day to make me aware of scleroderma, but I am glad there is a day proclaimed for scleroderma awareness.

Today, you will read about patients fighting for their lives and treatment.  I’m going to do something just a little different: I’m going to show you what I can do because of treatment available for scleroderma patients.

 

 

 

 

 

 

 

 

 

 

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it’s not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don’t have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn’t think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don’t give up even when it feels hopeless.  Get treatment for depression.  Exercise.

 

 

 

 

 

 

 

 

Scleroderma is going to knock you on your ass.   It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

 

 

 

 

A very special thank you to West Coast Krav Maga, and Kevin!

Scleroderma and Me: An Update.

Woman and her child holding hands. child reaching up to touch balloons.

Posted May, 2013.  Update since test; negative for pulmonary hypertension; James of Bounce to a Cure, broka another world record while raising funds for scleroderma research.

I left the video up to share with other patients, and let them know that sometimes it’s not pulmonary hypertension.

We interrupt this wonderful life for scleroderma.

Watch this video for more information…

Click Here 

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

I have returned to Krav Maga Classes.  I kept putting it off because I was so busy, I felt it would be too much.  Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class.  I am working to make more time for it, but easing back into it is the best choice for me.  I love how my instructors help me adapt, and do things I never thought possible.     Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort.  I feel balance balance between my inner warrior and facing the world calmly.

I also do yoga at home using DVD’s.  I plan to  join a local yoga collective and attend classes once my budget is squared away.  Today, I will do a short yoga DVD.  I need to work on m deep breathing.  Not exercising January and February while I moved has made a difference in my lung capacity.  I can’t take those deep breaths.  After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent.  I don’t just feel the flab.  The muscles in my chest become stiff and restrict the expansion of my lungs.  So, there’s that.  And here I am again back at square three.  Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise.  Now, at Square 3, it’s time to make these activities consistent.  I have such commitment issues, bit I am very optimistic about this one.

Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts!  Yeah, I’ll post pictures in June- maybe to help raise awareness.  If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body.  Look, the world is filled with beautiful women of all shapes and sizes.  When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research.  While I’m still here and looking good on the outside, why not use my body to raise awareness?  Look out Curvy Girls!

Have a great day!

For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:

The Scleroderma Research Foundation

Bounce to a Cure

Beyond The Mat: Divine Order.  A post form Temecula Yoga Collective’s Blog about how we are all connected.  Excellent post!

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

Day 25 of NHPBM: Advice to Newly Diagnosed Scleroderma Patients.

Day 25 NHPBM

Mission: Not Impossible.

Because scleroderma is different for everyone, my advice can apply to patients with sarcoidosis or other chronic illnesses.  We may have different diagnoses, but we all share the experience of loss.    I hate saying, “here’s some advice,” but I will write about my experience and what has helped me.  This can apply to the newly diagnosed and the not newly diagnosed.  It took me eleven years into my diagnosis to try exercising.  I went from barely able to walk, to thriving (mostly).  My point is, it’s never to late.

I would like to emphasize that trying to stop the progression of a chronic illnesses like scleroderma, is like trying to stop a freight train.  I have used this metaphor before, but for those who haven’t hear it yet, here is is:

We can slow down the freight train, but until there is a cure we will not be able to stop it.  There are times when the train speeds up and goes to fast to do anything.   When that happens, we need to jump on the front of the train, Polar Express style,  watch where the train is going as we ride out the acceleration until things become manageable.  The trick is to survive the ride.  

How to Ride the Freight Train
We can ride out the symptoms by taking meds as needed, pay attention to symptoms of depression and get treatment for them.  If you haven’t already, incorporate deep breathing, meditation prayer or all of those.  When in pain and symptoms are accelerating, our mission is to survive.  Its hard to be hopeful the flare will get better.  There may be damage done to internal organs and an ability or two  may be lost, and we may need to learn to adapt.

If I could start again in 1994, I would have adopted a yoga practice.  Meds help, but the greatest tool that makes my meds and prevention effective, is yoga.

Before Flying, We Must Learn to Fall
Moving when in pain can help alleviate it, but not without training.  Before starting anything, talk with your doctor about gentle exercise, then ask for a referral to a physical therapist who will evaluate your movement abilities and teach you tips like how to fall.

One day, I missed the last step on my staircase and fell.  What I learned from my physical therapist, taught me how to fall and prevented a possible grave injury that day.  LEARN HOW TO FALL.  Stunt people learn to do it.  Once you learn it will become a natural reflex.  I learned in 1999 after I fell from the top of a flight of stairs and sustained a head injury that nearly killed me.   I had to be relearn balance and I fall every now and then.

Move
It’s not easy to move while in pain.  There are days I only do a tiny bit of yoga, but that tiny bit helps.  I started  yoga in 2005, after years of resting and a great deal of loss of range of motion.  I had trouble breathing and my anxiety was off the charts.   Since learning yoga and deep breathing, I have maintained my lung capacity and I can move easier.  I stopped doing yoga regularly for almost a year in 2012.  I have started doing it daily and I can feel the difference.  I need fewer pain meds- if any at all and my anxiety is under control without sedatives.  I actually keep a stock of pain and anxiety meds because I have earned an infection in my fingers can happen at any time.  Getting the pain under control makes it easier to clean wounds and by cleaning them, I heal faster.  Exercise also increases circulation.  More blood to the wound = nutrition to cells and promotes healing.

Define Exercise
Before learning deep breathing techniques, I would think, “Exercise, are you nuts?”  Deep breathing exercises the muscles in the abdomen and chest.  By lying around and not expanding my lungs, my muscles tightened and nearly atrophied.  Getting them moving was hard, but the more deep breathing I did, the better I could breathe.  So, I classify deep breathing as exercise.  When I feel like I can’t move and I am sitting on the couch, I will take deep breaths.  I find now that when I need to move around while in pain, it’s easier because my lungs do not have to work harder to get air.  Deep breathing is exercise.  Do it.  Don’t beat yourself up if it’s hard.  Acknowledge it’s hard and give yourself kudos when you do.  Tell yourself it will get easier.

Yoga
I love it because although my downward facing dog is me sitting on a step stool holding on to push up helpers unable to lift my own weight, it’s my version of downward dog.  I’m trying and doing.  When I can, I work one on one with Ashley Fiala, at Living Yoga in Temecula.  With her assistance, I can nearly do the pose.  Because my hands are contracted, I am not able to lay them flat, but I adapt by holding a chair and Ashley helps me get to the pose with support.  Every time I see her, I am amazed of what I am capable of.

Getting Started
If you have never done yoga before, find a yoga studio in your area and learn in a class.  When I started, my first class was an hour and a half Kundalini Yoga class.  I spoke with the yogi Atmah Kalsa before attending.  Throughout the class, she would help me by propping up blankets for me and eventually, I brought my own step stool to help.  When I attended Anusara yoga at Yoga Living, the instructor did the same.  It helped.  One one one instruction can be expensive, but if you can swing just one hour, you will learn enough to help in classes.

Staying in Practice
It’s tough for me to stay consistent.  By nature, I am easily distracted and if I find a project, I throw myself into it and other things get ignored.  I can talk myself into and out of anything.  It’s a blessing and a curse.  I am the master of, “It can wait until tomorrow.”  The truth is, tomorrow is always tomorrow.  The time is now, and I need to remind myself to be in the present or nothing gets done.  The upside: My fingers are messed up; but I have convinced myself that someday, I will be able to open my hands again.  Yes, it’s may sound delusional, but it will get me to my yoga mat.  Once I am on my mat and things get hard; I talk myself into just doing one more exercise, one more second in that pose, one more breath of fire, one more leg lift- you get the point.

It’s hard to get started, its hard to do and it’s hard to maintain.  Anything worth having isn’t always easy.  If we just “show up” and talk ourselves into the next step to keep moving, it can be done.  It’s impossible to stop a freight train, but it can be slowed down.  Our mission is not impossible.  Choose the mission; you won’t be dis-avowed, but there is less of a chance of self destruction.  I will apologize now for the following picture of me in shorts.

 

Downward facing dog adapted for scleroderma:  Push-up bars: because my hands will not straighten out.  That is also the straightest I can get my arms- my elbows used to be worse.  I use a step-stool because my legs are not yet flexible enough to bend to sit on my heels -yet.  T-shirt courtesy of Bounce to a Cure & X-Pogo.  My apologies for me in shorts.  Brain bleach not included.

Helpful Links:

The Scleroderma Research Foundation

Yoga Assisted Downward Facing Dog (I cannot hold my own weight yet, so my goal is to strengthen my arms.  This video is a great example of how it’s done with assistance.  Do not try this alone! Get approval from your physician before even walking into a yoga studio and  of course, seek help from a yogi.  As always, beware of anyone selling products to “cure” your condition.

Living Yoga my local Yoga Studio

My one on one yoga instructor is Ashley Fiala   Watch this video of her teaching a class.  It’s a great example of how a good yoga instructor pays attention to students in her class by walking around and checking her student’s form.

My Yoga Meditation Teacher Yoga Dan

Power Yoga Evolution Studio in Andover MA

An excellent post about yoga by Chris Dean of Life Your Way

Bounce to a Cure

X-Pogo