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.”

June is Scleroderma Awareness Month

 

a·ware·ness

əˈwernəs/

noun
  1. knowledge or perception of a situation or fact.
    “we need to raise public awareness of the issue”
    • concern about and well-informed interest in a particular situation or development.
      “a growing environmental awareness” – GOOGLE

There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about.  Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.

Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising.  Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.

People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine.  We all have obstacles to overcome.  They are as different as night and day, but they are obstacles.  Of course people are as strong as I am.  Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.

It has been said to me that, “at least you don’t have cancer.”  Maybe.  Maybe not.  There are treatments for cancer that are already mainstream.  There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses.  For example:  Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression.  The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.

You and I are both aware of scleroderma.  It’s not enough to wear teal and do a fundraiser, but it helps.  Non-profit organizations that conduct research compete with other non-profits.  Not out right, but think about it; they are competing.  People donate money to a campaign they care about.  If it’s not someone they love, those organizations have to advertise to get donations.  It’s not good or bad, it just is.  I am more likely to donate to scleroderma research than cancer.  I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I.  Just like everyone else, I donate to causes that matter to me.  Yet I can still become absolutely furious in October because the world turns pink.  The money used for merchandise could be put towards research and assistant programs.  But without merchandise, people won’t donate.  We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something.  I do it.  You do it.  It’s very American.

Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here.  That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon.  I hate awareness, but without it, I’d be dead.  Awareness inspires action.  Please do something this month to teach others about scleroderma.  Thank you. -K

 

 

 

When It Comes to Scleroderma, I’m a Chicken

Or: Please allow me to reintroduce you to my booby.  

...Well, it’s not really my booby.  It belongs to everyone.

June 24, 2014

I have been keeping this to myself for years and what a better time to talk about my fear of scleroderma during Scleroderma Awareness Month.

After my diagnosis, I wanted nothing to do with scleroderma.  I avoided support groups not only because the ones I had been to mostly consisted of grandparents, before my son was born; I did not want to see my future.  I did not want to see what happened to long term scleroderma patients.  And 20 years later, scleroderma scares the bejesus out of me.  I want nothing to do with scleroderma, and I keep on running.

Scleroderma does painful, debilitating and ugly things to patients.  And I am so afraid of becoming disfigured,  I will do anything in my power to get away from scleroderma-like activities, like asking for help.   I work hard to be able to exercise.  I sometimes injure myself doing things I prefer to do myself, than have others do for me.  Do I need counseling to work through the stages of grief to get to acceptance?

I have never claimed I don’t need psychiatric help, but quite honestly, I don’t want to accept the whole death-by-hardening-connective-tissue that the universe has in store for me.  I have accepted parts of the results of scleroderma.  Like resting when I need to; spending hours in doctors offices, labs and tests; I have a port-o-cath in my chest, and I wear clothes that show it because I want to be an example for my son;  I have moved to be closer to specialists who know what they are doing so I don’t end up dead because of  a medical mistake.  Yes, that does mean I live away from my son.  Right now, I am abusing the English language with  punctuation errors.  I can’t really blame scleroderma for that, but for our purposes in this post, I’m going to blame scleroderma.

Unless it is medically necessary, I want nothing to do with scleroderma.  But this post is not a cry for help.  I’m sharing this because of all the crazy things scleroderma has brough into my life, nothing scares me more than Juvenile Scleroderma.

Have you seen what this can do to children?  Click this Link  Take your time and read about it.  Go ahead, we’ll be here when you get back…

Why can’t we do anything to stop this in children?  Oh wait, we can.  We don’t have a cure yet, but there are organizations who have researchers working on ways to treat it effectively.  There are two organizations, one in La Jolla, and the other in Michigan, who have found a way to stop fibrosis and reverse it.  There are organizations raising funds for scleroderma research with comedy fundraisers, galas, and walks.  there are individuals having bake sales, and it will never be enough until rheumatologists all over the world can recognize early symptoms to give patients a better chance with early diagnosis and treatment; and of course, a cure.

We have a lot of work to do, and I need your help.  Please learn about scleroderma please go to an event or make a donation for a cure.  It makes me furious that all diseases without effective treatment, must seek funds for research and treatment.  There are some pretty horrific ones out there, even more terrifying than scleroderma, but I’m not writing you about those diseases.  I want you to know how terrified I am of scleroderma, and even more terrified that people are being diagnosed with it every day, and then must wait to see how exactly scleroderma will change their lives forever.   Scleroderma is different for every patient.  Symptoms of scleroderma can exist as separate diseases.  How messed up is a disease that some components that make it a disease are other diseases?

In order to make my point, I have brought back our pal, Drew, The Blue Footed Booby.  He made his debut last year. When you see Drew, please help by sharing his picture and help share the word about scleroderma.

Thank you.

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone with my dog.

 

Tomorrow, I have an appointment with my rheumatologist at UCLA.  Today, I spoke with my primary care provider’s case manager (At the VA Hospital) and arranged to pick up my most current blood work.  I am really liking the VA in Long Beach.  The case manager wants me to contact her tomorrow morning with my doctor’s recommendations.  I do miss the rheumatology department at Loma Linda VA, but driving less was worth the move.

 

Today, I finally accepted what I already knew:  That I do not need a home health  care worker here with me 6 hours a week.  I’m too active now, which feels very good.  When I have to rearrange my schedule to be home to have help, I don’t need it.  I need someone to clean for me, not take care of me.  That’s a huge milestone.  After 45 days in the hospital and weeks of recovery, I’m now too active to have a nurse come over and that feels very good.  I know my family may be reading this and cringing, but they already know I’m not good at sitting still.  Today, though a Monday, was a great day!  I cleaned my own apartment.  The living room no longer looks like a laundry station.  My dog is exhausted and walked.

 

I gathered my test results and read my doctor’s notes from my last appointment.  My prognosis was good with a balance of diet and exercise.  I feel well most of the time, but I can tell my body is dragging from not exercising.  That’s really the last piece to pick up after that 45 day interruption.

 

So, tomorrow is the big day.  Back for my quarterly check up with my rheumy at UCLA.  Things are looking up.  Now the trick is to keep it going,  but hope is afoot and I think I have some great times ahead.  After being diagnosed with scleroderma 20 years ago this October, I never thought I’d make it this long.  I do wonder…  Is there some person who approved my lifetime service connected disability getting chewed out in someone’s office because I wasn’t expected to live this long?  Or is this person celebrating his/her retirement somewhere?  I hope they are celebrating, whoever they are.

 

I really should have worn make-up here.

That’s teleangectasia on my face.

Without the help of the Veteran’s Administration, and service connected disability benefits, I would not be alive today.  I would have had to endure ineffective treatment and it’s side effects, without the option to find a better doctor and pay out of pocket sometimes for a valuable second opinion.  I would probably be missing fingers because I would have had to have someone split a 100mg Viagra tablet into fours because Viagra was non-formulary at the time for Raynaud’s Phenomenon, (Yes, I was prescribed 25mg and the VA did try to get me to split up a 100mg.),  but I had doctors and practitioners who went to bat for me.  I do realize just how lucky I am to be here.  I wonder, why can’t everyone have disability benefits that are well above the poverty level, like me?   And don’t tell me it’s because I’m a veteran.  I think that is bullshit.  This is medical care and resources.  If a person is too sick to work, how can we expect that person to live a full life if they are constantly unable to buy medicine or healthy food?  And just because a person is sick and poor, that does not mean they do not deserve to live a full life.  Look, I don’t think we should send everyone on a European vacation, I’m saying wouldn’t it be nice if they could put their energy toward health instead of choosing between medicine and food?  I’m so tired of reading about sick people putting themselves in debt while being denied Social Security benefits and reapplying.  It’s just stupid.  And really it does send a message that if they just deny people enough, they’ll  die eventually.

 

Eliminating discrimination based on existing conditions is a start.

 

We are making progress, but it’s not enough.  I’m still here because I have had resources not available to most scleroderma patients.  Medication, though accessible, is still very expensive.  I wouldn’t know that because my medication through the VA is FREE.  Yes, FREE.  Imagine how many people might be feeling better if they had access to care and medicine.  Getting the right treatment based on expense rather that what works, is still the way insurance companies do business- and the VA if you don’t fight for it- but that’s a whole other post.

 

I really have no idea what to do about all that.  Is it just me, or did that go on a bit?   It’s your world.  I’m just living it it.

 

Don’t Hate The Playa, Hate The Game.

Then Set Aside Your Anger & Get to Work.

 

 

  In a place called, Wisconsin...

 

I was “awarded” a rating of 100% service connected disability.  See, I was “lucky” enough to have symptoms of scleroderma while on active duty in The Navy.

Early in my diagnosis back in 1994, and through the years despite my times of  inappropriate coping, I received the best possible care.  I broke the “rules” to get it.   In 2007, I was diagnosed with sarcoidosis after 14 years of symptoms that were confused with scleroderma symptoms, thanks to my persistence and the listening ears of my rheumatologist  and pulmonologist at UCLA medical center.  We owned a business at the time, and I was in charge of insurance benefits.  Of course, we had the best insurance money could buy for our employees (before we went out of business) and I used that insurance to see specialists recommended by my rheumtologist at the VA Hospital, who had no idea how to proceed with my treatment.

One lucky day, my rheumatologist asked, “Do yo have insurance?” and he referred me to colleague he now collaborates with to keep me alive and active.     Of course, it took some time.  I met the specialist at UCLA in 2005 and got my sarcoidosis diagnosis in 2007 after frequent  shleps from Murrieta to Los Angeles.  Once I got the biopsy that showed I had sarcoidosis, my rheumatologist prescribed Remicade infusions in addition to Methotrexate.  Long story short, after some time, the lymph nodes in my chest shrank, and it became easier to breathe.

Now, I enjoy Remicade every eight weeks at the VA Hospital.  And here’s where I broke the rules:  For my diagnosis, Remicade is number three in medication formulary.  If I had received my first treatment at the VA I would have had to fail Humira and one more IV drug before being given Remicade.  My rheumatologist at UCLA knew from my medical history and his experience with autoimmune diseases that Remicade was best for me.  So, how did I slip that by the paper pushers?  Golden Insurance.

My first infusion did need approval, because like the VA, other drugs were less expensive and Remicade was not the first choice of health insurance administrators.

Now, don’t go vilifying insurance administrators.  Like many Americans, they are probably overworked and underpaid.  And remember they have health insurance in their title.  Their job is to work on  behalf of a for-profit company.  Sure, an insurance company might give them cute names, like “customer care representatives”, throw words like “advocate” in their job title; but they are paid by the insurance company.  They are human and have responsibilities, they are not “the bad guy”.  They just need information.  And because like me, you or someone you know might have one or two chronic illness diagnoses that no one’s ever heard of and there is a lot of new information out there.  Of course there are crappy doctors, but you will find many doctors who are willing to help you advocate for yourself.  To get what you need, it’s just a matter of getting the right information to those who write the checks.

If – no, WHEN you find a doctor out there who will talk about non-formulary drugs that might work for you, or if you ask they will offer the name of non-formulary drugs to advocate getting, you need to get to advocatin’.   You may need to make sure the insurance company gets the information from the doctor to the insurance company .  This means opening up lines of communication between insurance administrators or “customer care representatives”.  (Really, all they are is an agent of the “guy” with the gold.  Remember, he who has the gold, makes the rules…)  This means yelling and screaming exactly what you think of them is not the right course of action. Don’t panic if you have already done this.  You just yelled at someone, so apologize and try to reopen communication.  I speak from experience on this one.  I have yelled at my share of “guys” who know THE guy.  And an apology is a nice way to open the door to communicate and get this person exactly what they need to get The Guy to part with his gold on your behalf.

You know what sucks the most about all of what I just said?   After all that work, most patients still don’t get what they need because of high copays.  I’ll get to that later.   See, I have the luxury of universal healthcare from the Veteran’s Administration.  It’s no picnic, but I have no copays and they can never deny me care,ever for any reason, until I’m dead. Which has turned out to be a lot longer than they thought…    

Yes, I know you have paid The Guy, but The Guy made some pretty tricky rules to make it so there is “gold”.  Look, its easy to get mad at the system.  But anger is time you are wasting when you could be making phone calls or faxing documents.  Yes, it sucks.  But don’t hate the playa, hate the game,  then set your hate aside and get to work.  Your life depends on it.

So, how did I manage to get non-formulary treatment?  My doctor submitted the documentation needed to show the insurance company that the best course of treatment was Remicade.  So, I got my first few infusions using my Golden Insurance.  Then, our company went under.   I disagree with my ex-husband it was The Golden Insurance that did us in.  It was, after all 2008 and everyone was going out of business.  So, we lost our insurance and I headed back to VA healthcare.

Back at the VA, my doctors there were working with my rheumatologist and other specialists at UCLA: Also known as: Continuity of Care. I was being treated with Remicade, but that was third in line in the formulary.  How did we squeak this one by?  Funny you should ask…

See if a patient is doing well on a medication, it is unethical to change the course of treatment.  Now, not every doctor honors this.  Again, don’t hate the playa, hate the game; then set aside your anger and get to work.  If your doctor tries to switch you, it’s going to be a fight.  Get used to it.  I know it sucks.  Life is unfair, but we do what we have to.  Don’t worry, you’ll make “don’t hate the playa” your mantra soon enough.

So back to our story…  So, my rheumatologist at the VA saw how well I was doing on Remicade plus Viagara (The same fight happened with Viagra as well).  It took some time.  I got approval for the Remciade first, then eventually, Viagra was approved.  I kicked open the door for Viagra at my local VA Hospital for women.  It’s considered a recreational drug for men.  And I did have to bring my medical records to my doctors at the VA from UCLA.  I still do.  What a nice happy ending, right?

You know what I hate most about my happy ending?  That patients who could benefit from the same meds I get, cannot get them because they have to deal with copays.  See, when I had The Golden Insurance, I could afford copays and when the business tanked, bankruptcy took care of the loose ends.  But as a 100% service connected veteran, my care and medication is covered 100% for everything.  EVERYTHING.  I pay no copays.  So I have access to Viagra and Remicade and Nexium .  Also non-formulary.   Yeah, like I said; kickin’ down doors.

Now, you may be thinking, but a copay is a fraction of the cost, right?  Right.  But in 2009, Viagra was $6.00 per pill.  And one Remicade infusion cost… It’s going to be legen-wait for it… $22,000.00 per infusion..dary.

 

Now, imagine yourself with no VA Healthcare or Golden Insurance.  Maybe you have a kid or two and recently find yourself collecting an “entitlement” check of $1037.00 per month, plus $537.00 per kid.  Living on such a “lavish salary” does’t leave much room for rent, food, clothing, school supplies for the kids and maybe there;s a birthday coming up for one of your little ones.   Do you see where I am going with this?  How many chronic ill and disabled parents have foregone their own medication to feed and house their own children?  (This is the part where I get sick.)

In 1996, I went into a patient advocate’s office and asked if my benefits were some kind of mistake.  See, I was given a pension and healthcare.  I didn’t feel that sick.

The advocate told me that I was entitled to these benefits.  That I had served my country and earned them.  She told me my that my prognosis was not good and I would need them.  I walked out of her office feeling not-so-entitled, but understood that I could not work and earn enough money to pay insurance to keep health benefits.  I had no idea that people who were not veterans, got a whole lot less and did not have 100% health coverage.  Yes, I even have dental.

So, I’m not sure where to go from here, but I’m starting something.   I am in some kind of remission-esque stable condition.  Scleroderma and sarcoidosis are both progressive diseases and the meds are only slowing it down.  But, I’m feeling good.  I;m no longer a hot mess with a blog.  I’m an active patient who’s going to go out and show the world that treatment of symptoms with the right meds does work.  That it’s not a waste of money to do research and make sure patients have access to care and treatment.

And so it begins, a fact finding mission.  Healthcare for all:  The Final Frontier.

Did you see how I started off all Star Wars then finished with Star Trek?  I know you felt that Jedi Mind Meld.

Other people have tried it.  There are programs set to go in place in 2014.  But there are people who can’t wait that long.  And starting another non-profit seems nuts when there are so many that need funding.  So, I’m going to go out in the world and figure this out.  I’m feeling good. I’ll have my bad days.  More than anything, scleroderma and sarcoidosis have taught me that I am mortal.  I plan to live a long time, but I have very little say in how long that really is.  I could mistake rat poison for Skinny & Sweet.  Because,  “It looks like Skinny & Sweet… except for the scull and crossbones.”  I couldn’t find a clip from the movie 9 to 5 for the younglings   So here is Honeybadger narrating the hummingbird.  Holy shit!  They’re fast…   

Taking Viagra Four Times a Day Is Not THAT Weird!

 

November 2, 2012

Please enjoy this  slice of my life, with blue sprinkles…

What most people know about Viagra, makes it sound weird  that woman would need to take Viagra four times a day, but after this post you will be able to explain why and hopefully make a comment about this post.  I want good and bad here.  Did you find it helpful?  Will you think of Viagra differently?   -because you know I will have to moderate a ton of “Viagra spam”.  (For the love of corn, comment! Please and thank you.)

I have scleroderma and sarcoidosis.  Let’s call scleroderma my “Anchor Disease”.  It was my first diagnosis and it has the most severe symptoms for me.  (That’s not an actually term, I just made it up, but it sounds nice and for our purposes here, I think Anchor Disease  works.) So, it all started with Raynaud’s, a symptom of many autoimmune diseases and can exist on it’s own, then it is upgraded to Raynaud’s Disease.  Raynaud’s is a symptom of scleroderma and part of the acronym CREST.  (How can one not love Raynuad’s.  Such versatility!)

So what is Raynaud’s?  It’s a sympathetic nervous system overreaction to temperature change.   When the body becomes cold, it slows the blood flow to extremities to keep the body’s core warm. With Raynaud’s, the nerves that signal muscle tissue around blood vessels overreact and rather than gently slow blood flow with a mild contraction, it chokes the vessels shut and can cut blood flow causing fingers and toes to fall off.  Seriously, I lost the tip of my thumb in 1996 because the artery to my thumb was completely shut and blood was flowing retrograde to the tip.  Oh and that’s not the punchline:  I had ovarian cysts that decided to pop all at once.  It was great times once morphene was on board, and not before specialists were brought in to rule out that the blood vessels to my colon, were not in a Raynaud’s spasm.  So, not only can Raynauds cause lost of fingers and toes, it can happen anywhere there is a blood vessel surrounded by muscle tissue that’s connected to nerve tissue.

How does Viagra or lesser known as (Sildenanafil) help in the treatment of Raynaud’s?  First, allow me to answer the question I am always asked: No, Viagra has no effect on my sexual performance.  Viagra, or Sildenafil, was designed to treat Pulmonary Hypertension in newborns.  Then, the BIG side effect was discovered and which overshadowed the versatility and life saving benefits of Sildenanafil.  This of course, a big break through to help men have a healthy sex life, but created a big headache for me and I’m sure many others, but it’s my blog and I can only speak for myself.  It gave me such a headache, my hair hurt.

You see, in 2005, I had a nasty ulcer on my left thumb that would not heal.  I was not yet on Sildenafil, I was still using niphedepine.  The artery in my thumb was in such a spasm, I started having flashbacks of 1996, when I lost the tip of my thumb. I did not want this to happen to my left thumb.  My doctors at the VA had already made sure I had a resource at UCLA and under the care of Dr. Furst.   The rheumatologists at the VA Hospital recommended I make the the trip to LA about  this issue.  They encouraged me to find a treatment they could learn from and use.  At the time, I had golden insurance.  I live over 100 miles from UCLA and even though the VA is only forty miles away, they did not yet have a treatment protocol for such severe Raynaud’s, so while preparing for my trek to UCLA, Dr. Furst, my rheumatologist  at UCLA advised by phone I double my dose of niphedepine to see if it works.  It didn’t, and crated a headache that felt like my head was hit with a hammer.  So, off to UCLA I went.

Under the treatment supervision of my favorite pulmonologist, Dr Ross, I was prescribed a medication that opened every blood vessel in my body.  I had to stay in the hospital during this treatment because of the high risk of my blood pressure dropping and my heart stopping.

From this, the medical team developed a treatment protocol to use Rovatio, to prevent the damage that had been done to my thumb for future patients.  Rovatio is low dose  Viagra.  There was no problem receiving it in the hospital, but once I got home, getting Viagra prescribed for anything other than erectile disfunction was nearly impossible.  Nearly.

I tried getting Viagra through my regular insurance first and eventually succeeded. But first, they required all kinds of information from my doctors.  Each insurance representative I spoke with, had no medical background, but was armed to the teeeth with clerical skills and they met my inquiries with laughter.  Eventually, my rheumatologist and pulmonologist produced enough research material to support prescribing the six dollar a dose pill to keep my blood flowing.

What did I do during weeks of waiting?  I relied on the kindness of my local practitioners.  I was given samples.  This was when pharmaceutical companies handed out samples like Pezz.  Oh and by the way, pharmaceutical reps had THE best quality pen covered with their logos and featured drug names.   Seriously, they wrote smoothly and I would always ask a rep for pens when I saw one.  I still ask when I see them, but I’m usually denied.   Back then, pharmaceutical companies had righteous swag, but I digress.

The laughter didn’t stop after getting approval for insurance companies to cover Viagra for me.  I would get asked stupid questions from well-meaning pharmacy assistants and of course my favorite, “What are YOU doing with Viagra?” said loud enough for other patients to hear was always a treat.  Often, I wanted to answer, “Yes, I need Viagra to keep up with my whoring ways.” But my son would be present and I had to take the high road and at least teach him to be nonjudgemental and not let him see the stupidity of others rub off on his mom.

Then, something magical happened. Our business went bankrupt, I lost my insurance and I was back into the Veteran’s Healthcare system.  My Rheumatologist at the VA had no problem getting Viagra approved.  There were a few hiccups.  We had to explain that I could not cut the dosage because it had to be exact.  The VA and many insurance companies classify Viagra as a “recreational drug”, which I think is bogus.  Having a healthy sex life is part of the big picture of overall health, but I’ll save that for my “soapbox post”.

So now, thanks to some traveling, time on the phone and a little kicking down the doors of stereotypes, I enjoy 50mg of Viagra, four times daily.  It keeps my fingers, toes and parts unknown intact and helps me breathe easier.  “Free to live a life of religious fulfillment”.  (Did you really think I would get through this piece about Viagra WITHOUT a quote and clip from Airplane!?)

There was also an additional unexpected side effect.  No, it had nothing to do with my sex drive.  It had to do with my lungs.  I notice it more now because my disease is progressive and it’s progressively effecting my lungs.  If I skip a does of Viagra (sometimes I forget when it’s warm) it is actually harder to breathe.  That’s right, Viagra helps my lungs breathe easier AND I recently found out from Dr Furst why that is:  Lung tissue reacts to Viagra the same way tissue  in the penis reacts to Viagra.  I was unable to find reliable research info to back this up this morning, but I did get the information direct from Dr. Furst, of UCLA’s Rheumatology department.  (I see him next week, so I will get the correct research information in print.  The search for the info will make your head explode.  If you do find a source backing it up, please, please post the link in comments!  I never like to discuss a research find without data to back it up in my posts, but it is a know obstacle when researching anything remotely related to Viagra, it;s best to just visit a medical library in person.)

So, I hope you enjoyed that slice of weird, courtesy of scleroderma.  Consider yourself enlightened of the clinical benefitTell your friends!

Links

Scleroderma Research Foundation

UCLA Rheumatology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=15&limit_division=1094&CFID=70251248&CFTOKEN=63458303

UCLA Pulmonology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=22&limit_division=1119&CFID=70251248&CFTOKEN=63458303

Oral Sildenafil in Infants With Persistent Pulmonary Hypertension of the Newborn: A Pilot Randomized Blinded Study: http://pediatrics.aappublications.org/content/117/4/1077.short

Background of Pulmonary Hypertension in Neonates and treatment http://www.nichd.nih.gov/cochrane/shah10/shah10.htm#BACKGROUND

Rovatio vs Viagra http://www.ismp.org/newsletters/acutecare/articles/20090129.asp

What is Revatio: http://www.revatio.com

Scleroderma In Depth Report by New York Times http://health.nytimes.com/health/guides/disease/scleroderma/print.html

Our 20 Year Anniversary. Yes, Me and Raynaud’s: Here’s some Ideas From an Old Couple.

Yes, it’s been 20 with Raynaud’s. Here’s a timeline list.

1992. My doctors didn’t believe me.

1993. My Doctors were not sure what the hell it was.

1994. Congratulations! It’s Scleroderma! CREST is not just my favorite toothpaste anymore.

2008. Viva Viagra!

2012. Happy 20th to me and my  Raynaud’s symptoms! (Do I register at Macy’s or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud’s is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn’t matter what climate you live in, just take precautions and be plan to be cold all the time. It’s a real timesaver.

2. Tune out people who tell you just because they aren’t cold it means you are just “oversensitive”, because they are uninformed and believe they are helpful.  Remember THEY believe they are helping you.  I know it’s difficult, but I have to tell you receiving stupid advise from well meaning people becomes easier with time.  The sooner you let it roll off of you, the better you will feel.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud’s attack. Bringing having  a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are covered in comfy socks, my core temperature stays consistent.

5. If I have a Raynaud’s attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else’s (They are usually warmer)

6. When having a Raynaud’s attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages are helpful for me .  Scleroderma is not a one-size-fits-all disease and always ask your doctor f massage is right for you .  Massages can be expensive.  I have found Massage Envy very affordable and their therapists are well trained. Never be afraid to ask about a therapist’s experience. ALWAYS observe their cleanliness practices and don’t be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a “discount”  place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn’t always mean they are consistent with cleanliness practices either. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don’t be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage helps quite a bit on my hands and feet,but before you even get a massage anywhere on your body ask your doctor first.  Oh and during a pedicure, If someone ever pulls out a razor and tries to “trim your calluses” with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only person that should ever use a razor to trim back calluses.  Your podiatrist can show you or a loved one how to do it at home.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven’t tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran’s healthcare, which is even better.) and a private OT chain treated me like a cash cow. It wasn’t the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.  The right occupational therapist will teach you many useful exercises and prevention tips.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. The very best thing that helps keep my Raynaud’s in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son’s not here, my dogs will at least keep me company. They look at me like I’m crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don’t be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.  (Good God!  James Brown’s Celebrity Hot Tub Party)

16. Moisturize.  For me, Kama Sutra Oil* is the only thing that keeps my the skin on my hands and from cracking. The skin on my fingers is scar tissue and  their Sweet Almond Oil seems the most effective for me.  It’s not just for hot monkey love.

So those are my tips.  If you have any to add, please leave them in the comments section because my way is not the only way.  Living with Scleroderma isn’t easy, but it can be done.  It takes a lot of patience, some sedatives and some good old fashioned stubbornness, but it can be done.  You may have Scleroderma, but Scleroderma does not have you.

*Update, June 3, 2014:  I have found in addition to Kama Sutra Sweet Almond oil;  Cetaphil, Amore D’Or or Tarte D’Amande by Votre Vu, or a good “dry” body oil to be effective moisturizers as well.