Scleroderma Project: Beneath The Surface, Should be Seen by Everyone.

 

The title of my last post is, “I Hate The Documentary, Project Scleroderma: Beneath The Surface”.  I thought about changing the title, but I have decided to keep it, and follow up with this post.  I take you on a scenic route to my point, so feel free to jump to the paragraph that is headed in bold type, for my point.    There is nothing simple about scleroderm.  Every patient is different.  

The documentary itself, is a labor of love by those who created it.     I have seen clips and is very well done.  This documentary

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

is needed because it informs and educates.  What I may have failed to relay in the last post, is that in addition to my denial,  I hate the lack of education throughout the medical community.    And then there is the issue of  spell check here in this Word Press program, that insists on auto-correcting scleroderma to sclerosis.  I’ve been acutely ‘aware’ of scleroderma for over twenty years.  To say that I am beyond frustrated about how little people know about scleroderma, is an understatement.  Luckily there are people who care enough to donate their time and money to amplify the voices of those with scleroderma.

For twenty years, I have been raising so-called awareness.  Friends and family “like” my blog’s Facebook Page, but never share my posts.  I wouldn’t mind that so much if they weren’t so quick to share every Bible verse or “Save the Tatas” meme.  I haven’t had the guts to say this to friends and family, until now.

Dear Family and Friends,

Thank you for asking me how I’m doing and offering to help out, but I would really appreciate it if you would follow up with action like sharing things from my blog- or at least reading it.  These memes that you post like “Share if you agree cancer sucks”, seem nice.  But I think we can all agree you are sharing the obvious.  How about sharing something about an illness that few people know about like, oh I don’t know.. maybe scleroderma?  It’s great to see all your selfies at breast cancer runs and the swag you spent a ton of cash on, but when I post about fund raisers why is it so quiet?  Seriously all you have to do is share and donate a dollar when there are fundraisers.

There are many of you who do, but you know who you are.

XXOO

Karen

This post may be too honest, but it’s not like anyone reads my blog anyway.  I have avoided speaking out to friends and family on Facebook, because I don’t like to complain, and let’s face it:  More people have been affected by things like breast cancer.  But just because another disease gets more ink, that doesn’t mean I shouldn’t speak up every now and then and say: Ahem.. Over here please!

Yesterday, I posted about hating Project Scleroderma:  Beneath The Surface.  And if I can express my feelings about dreading to watch the documentary spearheaded by a woman who lost her mom to scleroderma within four months of her diagnosis, it would be irresponsible of me to be honest to strangers and not my friends, family or acquaintances.  What it boils down to, I hate having something no one else has heard of.   I hate that people share something every day about cancer or God, but rarely share about scleroderma.  I hate being a scleroderma patient.

Scleroderma: Beneath The Surface, will help spread the word about scleroderma.  Every day, I am reminded that there is very little publicity about scleroderma.  I was recently told by a customer service representative at the Social Security Disability office, that her understanding of scleroderma is that it’s a skin condition.   I wasn’t rude about it, but I did explain to her what scleroderma does to a human.  That it’s far more serious than a skin condition or rash.  She was shocked, and I was encouraged by her willingness to learn.  I was both encouraged and annoyed that someone who works with disabled Americans, thought scleroderma was just a skin condition.  Just thinking about it, makes my hair hurt.

Just because scleroderma doesn’t  have the coverage breast cancer “enjoys”, I do not want to diminish how serious breast cancer is, and how its publicity has saved lives.  Of course breast cancer continues to kill men and women and still there is so much to be done.     Many organizations have made progress because of generous donations.  What I see in addition to this great work, is a new industry, and that is something I am not fond of.

We don’t have to agree about everything, but we do agree scleroderma needs to be cured.
So many wonderful  Americans,  found ways to fund treatment for patients who could not get it, with fundraising.   That is a wonderful and selfless accomplishment.  And somehow, all of these good intentions have created the Disease and/or Cause market of swag.  We all love swag.  I don’t know about you, but swag that tells me I’ve done something good gives me a warm and fuzzy feeling.   Swag needs to be manufactured, marketed and sold.  Swag has become profitable when added to big named brands.   Do you really believe the National Football League would come out with all that Pink merchandise, if they did not profit from it?

I think it’s wonderful when communities come together.  Meanwhile, many individuals who belong to these communities, complain that giving all citizens access to healthcare, no matter what they could pay, is wrong because it’s socialism.  Now, before you stop reading this post because I do argue for universal healthcare for all in The United States, hear me out.

People have told me for years that I deserve the best, because I am a veteran.  I disagree.  I deserve the best because I am a human being.  I believe all who are in the United States should have access to the care they need, not what an insurance company or government program is willing to pay for that specific care.   Sure, I’m a veteran and I have scleroderma. But wouldn’t my family feel that I deserved the best possible care if I were not a veteran?  What if I was you daughter, sister, wife, mother or child?  Would you still feel that it would be okay that  I am denied treatment because I cannot pay for it?  I am also arguing is that veterans have friends and family,  they would like to see get the medical treatment they need.  (One, two, three, what are we really fighting for?) I have had access to the greatest treatment at the time, for scleroderma after fighting in both the VA system and private sector with what was nicknamed, Golden Insurance.

When things were going well for the business my ex-husband and I owned in the early 2000’s,  I chose the company’s health insurance plan.  Back then, no matter how much money my spouse made, no insurance company could provide the comprehensive coverage I needed, due to my pre-existing condition of scleroderma, unless I was employed.  So, I worked from home and chose such a comprehensive package for our company, it was one of the many reasons our company went bankrupt.  I already had access to great care at Loma Linda Veteran’s Hospital.  The Chief of Rheumatology told us that my prognosis was getting worse.  That if we had private insurance, he would recommend me to a colleague who just happened to be the Chief of Rheumatology at UCLA Medical center.  That admission of, “I don’t know what to do next, but I’m going to find someone who might”, saved my life.  I owe my life to this great rheumatologist who knew the difference between doing what’s best for his patient, and doing only what he could.  Of course, my ticket to the land of affordable second opinions, was money.  (That reads funny to me as well, and it’s not my grammar.)

If I did not have insurance, my rheumatologist could have referred me to the West Los Angeles VA, which could have taken months.  Meanwhile, Veteran’s health Care was overwhelmed with casualties returning from Iraq and Afghanistan.  The Veteran’s Healthcare system was already overcrowded and underfunded before two wars.  My yet to be diagnosed sarcoidosis was simply written off as a symptom of scleroderma, and nothing could be done.  So my appointment with a UCLA associated rheumatologist might have taken as long as a year to be seen.  My difficulty breathing was dismissed by local doctors and emergency departments in Murrieta and the Loma Linda VA hospital as a symptom of scleroderma.  I know this because these things were written in my medical records by whatever resident doctor in the Emergency Room was, who just happened to have little experience with scleroderma patients.  At UCLA, my biopsy was expedited because after my pulmonologist at UCLA reviewed several of my chest CT scans from other facilities, he read in the notes that I should have further testing for lymphoma.  Following the recommendations of the radiologist’s report of these scans, was a another note commenting the testing for lymphoma results was unnecessary because I had a pre-exisiting condition of scleroderma.  The pulmonologist at UCLA ordered a PET scan and the lymhnodes in my chest lit up like a Christmas tree on steroids.  There had to be a biopsy done, because everything pointed to cancer.  A biopsy of my lymph nodes and lungs were done less than two weeks later.  Granulaomas known as sarcoidosis, were found in my lymph nodes.  This discovery was huge.  My rheumatologist at UCLA ordered a medication that my Golden insurance company and Veteran’s Healthcare formulary, both required the failure of two other drugs before using Remicade.  So, my rheumatologist provided the golden insurance company evidence to support my need to skip right over the formulary, and allow for Remicade.  It took some time, but in less than six weeks, I received my first infusion of Remicade at my local hospital in Murrieta, not eighty-five miles away at UCLA.  The cost was $22,00o per infusion.  (Yes, that is a five-figure number for one dose of medication that by the way, saved my life.)

There is no way of knowing for sure if the Remicade stopped the scleroderma from hardening my lungs or the sarcoidosis from making my lymhnodes so large, I would be unable to get the proper amount of oxygen in my blood and my heart would fail.  What I do know is that eight years after my diagnosis of sarcodosis, I maintain a stable prognosis.    My treatment with a medication that was $22,000 a pop was transferred to the the Veteran’s Hospital at Loma Linda.  The rheumatologist who ordered it there, the Chief of Rheumatology presented evidence to counter the formulary restrictions, based not only what was provided to my Golden Insurance’s formulary, but my progress since the treatment began.

There is a continuity of care requirement for medications that are benefiting a patient when there is a change of insurance.  I was not able to stay on Remicade because simply because I was already on it.  There was a record the Golden Insurance company had, of the valid research backing this decision, and there was evidence that in my case, no matter what was being suppressed by this strong immunosuppressant, the drug was working.  At this time, there is no way to know of knowing what Remicade worked to fix.  I am one patient with both scleroderma and sarcoidosis.  Both chronic illnesses are rare and I have yet to know of another human with both.  My rhumatologist at UCLA, who is a leader in scleroderma treatment around the world, just recommended what he thought would be best, based on research that existed at the time and his experience.  (The world reference is not an understatement. My doctor is **Dr. Daniel Furst.  Go ahead.  Google him.  We’ll wait…)
But what does this have to do with a documentary about scleroderma?
I live in Southern California.  My location alone, allows me access to doctors who have experience with scleroderma, and/or who are actively overseeing and doing scleroderma research.  The Veteran’s Hospitals in highly populated areas like LA and Loma Linda are teaching hospitals where young minds go to learn and make progress in treatment and diagnoses because they are med students working with those who teach, do research and have mountains of experience and work, they can build upon to improve care.  Teaching hospitals are where progress in treatment are made, and save lives.   UCLA doctors and faculty are the specialists who see patients at the West LA VA.  Not everyone has as good an outcome as I have had.  I am aggressive when it comes to my care.  Being able to fight for my care, and get it, has a lot to do with my location.  If I lived in Bakersfield, I would have to drive, or take a bus provided by the VA, to see doctors at the West Los Angeles, VA.  Why do I know this?  Because there are not enough facilities for veterans to get the care and specialization they need in Bakersfield.  They travel to LA.  This is nothing unique.  When I lived in La Crosse, Wisconsin, I had to travel three hours by car, one-way to get the care I needed.  At one time, I lived across the street from a hospital that consulted with the Mayo Clinic.  Yet I still had to drive three hours one way to see a rheumatologist my VA Healthcare would cover.

Doctors need to be educated, and get the most current information and resources available to treat their patients.  Patients should not have to cut medication in half so they can get almost the right dose they need, to save an insurance company money.  In fact, insurance companies are the consumers to pharmaceutical companies.  The statement: “Cutting medication decreases the cost to the consumer”, is incomplete.  Sure, it does cut the cost to both patient and insurance company.  Production of medication using the same dosage, increases the profit a pharmaceutical company makes because it does not have to pay for the production costs of a smaller dose of the medication.  So we’re inconveniencing and sometimes hindering the care of  patients to save a buck.  Someone has to make a sacrifice, and it’s going to be a company who answers to shareholders.  The company or insurance company does not serve the consumer (patient).  It serves the bottom line and it’s shareholders.

From my perspective, medication is viewed as a luxury item, by those who don’t need it.  Medication is not a luxury item.  Medication extends, improves and saves the lives of We The People.  Should anyone be denied lifesaving treatment, simply because they cannot afford it?  No, but this has become The American Way.  Because providing healthcare to all that is paid for by the Federal Government would be socialist.  Yet aren’t we entitled to “Life, liberty and the pursuit of happiness”?  No, because for some reason it has become the norm to deny people medical treatment they are unable to pay for, and allow them to die.  Wait, I know the reason.  It’s because we want the freedom not to pay for people less fortunate, like those who are sick and disabled, taking advantage of hardworking Americans.  People have limited access to treatment and qualified practitioners.  When something the government creates to help those who need medical care but can’t afford it, many companies who benefit by profiting on expensive medication, spend millions to stop expanding care to people who can’t afford care.  Not because they are cruel, but because it’s in the best interest of the shareholders.  A company cannot be cruel or compassionate.  It is a company and exists merely to earn a profit, no matter how helpful they appear.  (Companies are not people, my friends.)

Finally, my point:
Scleroderma Project:  Beneath The Surface, needs to be seen to show that swag is not what patients need.  Sure, swag is nice and don’t we all look good in pink or teal on Instagram at the most recent Race for The Cure?  I’m tired of swag.  I’m tired of merchandise.  Why is it that the disease with the best lobbyists gets all the funding for research?  I would love to see less people dressed in a color for their cause, and more money going straight to research for their cause.  I don’t hate the documentary itself.  I hate what the United States has become and that we need to show people suffering slow, painful deaths to prove that research for scleroderma needs funding, and is not simply a skin condition.  So download the movie, watch it then share a link to it and say a little something about it when you do.  The world needs to learn about scleroderma.  Watching and sharing is what you can do to help scleroderma patients like me.

Download Movie

 

** Dr. Furst educates rheumatologists around the world.  If you would like to find a doctor near you, please contact the Scleroderma Foundation by visiting Scleroderma.org  and you will find a doctor closest to you that has proper experience and education.  Dr. Furst works with my team of rheumatologsts who treat me through the VA.  This is because of my geographical location.  

Be sure to visit Project Scleroderma on Facebook and like their page along with Scleroderma Research Foundation and The Scleroderma Foundation.  Thank you!

 

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.

Chasing Dragons

Trying to keep up with each organ system effected by the progression of scleroderma is like chasing dragons.  I don’t know what to look for, so the dragons taunt me with a hint here, and a clue there.

I have pulmonary fibrosis.  It can exist alone or be part of an associated condition.  Pulmonary fibrosis is an associated condition of scleroderma for me. Parts of my lungs have scarred and become fibrotic.  Funny thing about that is the strain of my lungs working harder can also put a strain on my heart.  Or I could have pulmonary hypertension.

I know there may be friends and family recoiling in horror while reading this, (If this a surprise, I truly am sorry.  And if you are that far behind you really should follow my turtle page on Facebook.  Keeping up with this is exhausting.  I’ve had this diagnosis for a long time.  We all know where this is going in about 50 years.  I just might need a lung transplant on the way.  Again, if this is a surprise, we really need to connect on FB.)

I’m the protagonist in a dark comedy.  (Which could be a result of an over inflated opinion of myself, but that’s a whole other post.) Of all the medical names for things I have had bounced off of me, my internal voice sounds like Amy Poehler in a round of “Really?” with Seth Meyers.  The most exhausting thing about all of this, is having to fight for tests to get ahead of the mayhem of scleroderma and its associated conditions.

 

I Move Like Jagger, I Just Don’t Look As Cool

Mick Jagger’s is 69 and he can move around on stage like he does, because he stays in shape.  When I’m 69, I plan to move that way. Without all that head moving and hands-on-the-hips thing.  I’m cool, but not Mick Jagger-cool.  I said I can move like Jagger, I don’t have the moves like Jagger. 

If I stay in shape, I have a better chance of a favorable outcome when the disease progresses.

Wench!  Bring Me More Viagra! 

I am taking Viagra four times a day to keep blood flow to my fingers and toes, as well as normalizing the pressure in my lungs.  I know this, because if I skip a dose of Viagra, I know it.   I stay as active as possible.  I take long walks, go hiking and do martial arts.  If I don’t get some cardio, I feel it the next day.  In my head (And by in my head, I mean it’s what I think, but it’s probably not true.)  So, In my head, I believe I am somehow staying ahead of the progression, somehow breaking up the fibrosis with my magic exercise.  Abra-freakin-cadabra.  During my exercise I have no distress, except the occasional fall in Krav Maga (Israeli Martial Arts) which all students experience.

The Viagra makes it so I can do these things without causing damage.  Which is fine.  I’m okay with that, but like all treatments, they are no cure.  Eventually, I’m going to need more Viagra or a whole new drug.  But while I’m on Viagra, we should get to know my heart.  Because when lungs have difficulty that gets progressively worse, the heart can be damaged.

So Let’s Get a Baseline
Sounds so simple, doesn’t it?  We know enough about scleroderma and related conditions like pulmonary fibrosis, an echocardiogram  (1)”…estimate  PASP (Pulmonary Artery Systolic Pressure) in patients with advanced lung disease such as interstitial lung disease and chronic obstructive lung disease can be difficult to obtain”

Okay, so since we have pulmonary fibrosis with scleroderma and tricuspid regurgitation (That is asymptomatic for me.) there is more than one study that calls for a right heart catherization.  (It’s just a test, don’t freak out.)

So, as I mentioned earlier, getting a baseline seems simple.  We want one so that we know if a condition is progressing.  Let’s see what my normal is so that when “shit gets real”, we can quantify changes and treat effectively.  

Apparently, there are doctors, who believe that a baseline is not necessary, without a diagnosis of pulmonary hypertension.

It could be called a challenge.  I call it a day that ends in “Y”.
Challenges for tests are nothing new to me.  When this happens, someone is lacking information.  When this happens, it becomes my responsibility to get the practitioner the information.  I made a case to rheumatology, they concur and some department head will have a come to Jesus moment.  It’s all good.
When I’m told “no”, I find a way to get to yes.  And I have never even read that book.  I switch to sales mode.   What can I do do to get you in to this car, today? 

What’s with the dragons?
Today was just one of those days. This was the third follow up appointment about a right heart cath, because the Chief of Rheumatology had been out of the country. We needed some seniority to get this heart cath done.  I felt like I was chasing something during my appointment, then I thought:  hey, why not make it a dragon?  Then once we were all in agreement that my test would take place, I felt like I was ready to ride.  Because that’s really all this is.  You get the diagnostic tools, the results will dictate the next move.  The test is coming.  I’ve caught the dragon.  Why not go for a ride?  It will be bumpy and scary, but it’s just a dragon.   Maybe I should have used an airplane metaphor, because on planes they serve drinks, and on a metaphoric plane, I can drink.  Dragons sounded really good on my drive home from the VA Hospital today.  I’m too tired to redo this.

If You Skipped to the End:
When a doctor tells me a test I need can’t be done because the chief of that department where the test is needed from doesn’t want to play, that chief just needs more information.  I could get mad and pitch a fit, but I have found anger a waste of time.

If you find yourself fighting for tests, please don’t give up, keep fighting.  I know it sucks.  It won’t get easier, but eventually, you will get used to it.  Of course it sucks.  But life is what you make it and complaining without action will get you no where. You wil find ourself walking information to doctors.   There are a lot of crazy diseases no one has heard of, so it;s our job as our own best advocate to get info where needed.   Don’t hate the playa, hate the game.  Then, get to work.  

Get More Information

Join me with Treatment Diaries Tuesday, May 7, for a Tweet Chat!  Watch for announcement on Facebook.

(1) The Role of Echocardiography in the Diagnosis and Assessment of Pulmonary Hypertension

Right Heart Catherizaton, Johns Hopkins Medicine.

Scleroderma Research Foundation

The Scleroderma Foundation

Scleroderma Care Foundation

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

 

 

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