Sarcoidosis Archive

 

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!

 

Douchebag: (Doo-sh-bag) n.  One who works to outlaw safe medical procedures for women while insisting vaccines should be optional.
Use in a sentence:  Sean Hannity  should visit countries where vaccinations are rare and see what the measles do without treatment or prevention.  Sean Hannity is a Douchebag.

The term Pro-Life, is a like a dog whistle, but instead of sound, the Pro-Life Whistle uses identity.  Those who identify themselves as Pro-Life, hear the words, ‘Pro-Life” and start arguing against any idea that suggests women who have abortions are not cold-hearted baby killers.  We who have have had abortions are not cold-hearted baby killers.  We don’t wake up and decide to go have an abortion to earn points  on a punch card to receive a free one on the eleventh visit.  Abortion is a medical procedure.  And for many women, it is the dreaded choice after exhausting every option to have a healthy baby, or save our own lives so we do not orphan the babies we already have.  Also there’s a choice we make to have an abortion because it is what is best for the person making the choice.

As someone who has terminated a pregnancy, I speak from experience.  It is absolutely none of your business why I had an abortion.  I’m really only admitting it because we are still fighting to keep it legal for 40+ years.  That, and I don’t give a rat’s ass what you think of me because I decided to do so.  I will give you a hint:  My birth control failed, there was no Plan B option at the time, I was in my 20’s and it had nothing to do with saving my life.  I have heard people say things like, “Women use abortion instead of birth control.”  In my 44 years, I have met only one woman who  does not use contraception of any kind and has no qualms about terminating a pregnancy if one happens through carelessness.  This does not make me an expert on abortions, but that does tell me how few people I have experienced on my path, who have done that, and that is her right.  I don’t have to agree or disagree with anyone when it comes to their own body.  The people who will pay the cost of restricting rights to safe and legal rare procedures, are all women.

If you don’t believe in abortion for any reason, then don’t have one.  Please stop spouting misinformation and harassing women who are forced into situations you cannot possible imagine.  Please get out of our ovaries and do something that will actually help children; like funding free lunch programs, free day care or preschool programs, and domestic violence treatment and prevention.  Don’t hide behind some passage in The Bible and dare to call yourself a Christian, then  mandate pain and suffering onto fellow humans.  Yes, I have terminated a pregnancy, long before I even had scleroderma.  If I were to get pregnant today, I would terminate the pregnancy because I will most likely die,  and honestly, even if new information came about that revealed I would be fine, I’d still terminate the pregnancy.  I don’t have to justify it.  I can’t rely on oral birth control due to high blood pressure likelihood, and risk of stroke.   I cannot risk an invasive sterilization procedure because my body destroys its own cells.   I must rely on a thin piece of rubber and if that breaks, I have Plan B to keep a potentially fertilized egg from implanting itself into the lining of my uterus.    It’s my body.  How dare you judge me for decisions I  make regarding my own well being. If you get pregnant, do what you feel is right.  Stop trying to regulate my ovaries and uterus and proclaim vaccination should be a choice.  T here are diseases that are killing people who are suffering and in great pain.  Doing something to help those in need of a cure, and need assistance while waiting.   Stop obsessing over zygotes and fetuses.  Take care of those who are out of the womb.  Stop calling sick people lazy and vilifying the poor.  Stop watching Fox News, and pick up a book.   Don’t regulate my ovaries and proclaim vaccinations should be a choice.

 

The week of October 5, 2014, I had yet another stay in a veteran’s hospital with another weird diagnosis.   It’s only a matter of time before I recognize  my case in an edition of Scientific American’s Mystery Diagnosis article.

Monday was busy, and Tuesday ended with a trip to the ER, presenting with neck pain and difficulty swallowing.  My neck felt like I had whiplash.  I hadn’t done anything to injure myself, and wrote it off as a strained neck from to much driving.  But something wasn’t consistent with pulled neck muscle.  It was like a bad episode of Sesame Street’s “Which One of These Things is Not Like The Other?”

I assumed it to was  allergies.  Which is stupid, because I knew better.  After twenty years as a medial anomaly, I just  knew better.  But I didn’t think anything of it until my cousin asked if I had any flu-like symptoms.

So I packed a bag, got in my car and drove myself to the ER.  I always drive myself because I hate taking people with me.  I end up feeling like I need to make them feel comfortable.  I get those worried looks, and I hate them.  It’s not their fault I view my ER visits as somewhat routine.  Mostly because I never let things get so far out of hand,  I couldn’t drive there.  I’d rather go to the ER and ‘cry wolf’, than ‘Suck it up, Buttercup’ until my condition becomes catastrophic.  I’m proactive that way, I guess.

I did notify my family I was going, which I hate to do, but I am also thankful to live far enough away they can’t just jump in the car and come to the ER.   Not because I want to leave them out, I just hate not having answers to their questions.  I view ER visits as fact-finding missions, in addition to emergency care.  I’ve been doing this 20 years now, and a trip to the ER is just normal to me.  Not because I have fallen through cracks in the system.  It’s because whatever the complication,  waiting for a doctor’s appointment in a specialist clinic, held once a week, is usually  not an option.

My greatest fear of living in Long Beach since the beginning of the 2014,  is that things might get so bad, an ambulance might be needed one day, and I would not be taken to a facility that is equipped with doctors who know how to treat a patient with scleroderma and sarcoidosis.  Instead, I would be taken to the Long Beach VA, for another botched diagnosis.

The  ER in West LA, appeared to have their act together.  Well, except that  ER nurse profiling me as a drug addict.  I made sure to tell his supervisors, but that’s a whole other post.

Back to the ER:  First, using a CT scan with contrast, observations of signs and notation of symptom,  I was diagnosed with a retro pharyngeal infection.  well, sort of- it was worst case, but there were missing symptoms specifically a fever and evidence of an abscess.  Luckily, I was fortunate enough to work with a team of doctors who were interested in answers, and getting them correct.  So, they followed the evidence.

I thought when diagnosed wasn’t  as bad as a progression in scleroderma or sarcoidosis.  Of course, it is a very serious infection that could be fatal if not treated in time.  But the doctors were a little puzzled.  I had swelling, but no fever and no sign of an abscess, which are both criteria for diagnosis.  I was still treated with antibiotics until the diagnosis could be proven otherwise.

I was seen by an ENT, who then requested a second CT scan with contrast, and later, that diagnosis was changed, thanks to the very capable rheumatology department and lucky me, my attending doctor in the hospital was a rheumatologist.  I think she is also the chief of rheumatology.  The diagnosis was changed to calcium hydroxyapatite deposition in the periarticular soft tissues of my neck.  In English:  Calcinosis in my neck tissue, specifically the tendons.

And there was a treatment.  And of course when the in-patient doctor told me the diagnosis, I of course asked to have the infection instead, because to me, anything scleroderma related in a new region of my body, no matter how treatable, in my mind is always the worst possible outcome.  Of course, I had a much better prognosis with calcinosis in my neck than an infection in my neck, but it was scleroderma and it took hours to get my head out of my butt over it.  (Seriously, what kind of an idiot would rather have an infection that a treatable symptom of a chronic illness?  Oh, right.  I’m that kind of idiot.) 

So I was given medication to break apart the calcinosis, kept on antibiotics just in case and my condition improved in about thirty-six hours.  I was sent home.  The very next day, I went to my high school reunion and had a blast.

And here I am seven days after discharge, feeling completely recovered, and packing my things to move to LA.  I wish I could stay in Long beach, but I cannot be guaranteed continuity of care at the Long Beach VA

Sometimes, I would like to have a gentler, familiar diagnosis instead of scleroderma.  A diagnosis other people have heard of,  like chlamydia.  At least that can be treated.  And when I tell people what I have, I would not have to explain it.  Everyone has heard of chlamydia, and that can be cured.

For More information:

Scleroderma Research Foundation 

Scleroderma Foundation

National Institute of Health

 

Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?  

Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day.

It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son.  Bill Murray’s character, Phil was having his worst day ever, over and over.  Things eventually got better for Phil, but not until he figured  out how to be happy, no matter what his circumstances.  (Yeah, I know it’s an old movie and you probably got this message back in the 1990’s, but this is still new to me.  So please humor me and read on.)

I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994.  Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend  in my heart.

Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma.  There, I said it.  I don’t want to get together with other patients who have scleroderma simply because we have scleroderma.  I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal.  Anything but talking about living with scleroderma.    And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma.  You see, it’s not really about the other people in my life.  I just don’t like being in this situation.

Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it.  My problem was that I hated my environment so much, I wouldn’t stick around.  Have you noticed I have been moving every single year since 2009?  My family has, and I just got the memo.  I’m running from something.  But this year, I decided to stop running.  hen I watched Ground Hog Day for the 5oth time and related.  I still haven’t figured it all out yet.  But I have figured out I too could be that “nice young man from the motor club.”  I’m just not there yet.  And that’s cool too.  Or maybe I am there and I don’t know it.

I can fight situations all we want.  But then the time comes when I  need to stop driving angry, and today will be tomorrow.  Confused?  Me too.  So, why not  curl up on the couch and watch a classic Harold Ramis movie.  it makes everything better.  Have some popcorn, and don’t be stingy with the butter.

 

 

 

I am in no way qualified to give advice about methtrexate, (or anything, really)  but I’m going to share my cautionary tale.    It’s a bit of scenic route.  Thanks for riding along.

When I was first diagnosed with scleroderma, I had three questions:

1.  Sclero-What?

2.  Is scleroderma going to kill me?

3.  Can I drink with these meds?

The most important question I have ever asked about scleroderma, and eventually about sarcoidosis,  is  question number three.  No matter what the diagnosis, the answer to the first two still have easier answers than number three.  No one is really ever mentally prepared to be diagnosed with a debilitating, fatal disease no one can pronounce, so you’re going to cope some how. Why not do some drinking? ( smoking or eating.  I am so thankful someone was wise enough to put marijuana into baked goods. God Bless America.)

I’ve been taking methtrexate off and on since 1996.  This does not make me an expert.  It makes me someone who is lucky to be alive.    I am guilty of playing  “home pharmacist” on more than one occasion.  It has been helpful to me at times like the Percocet Incident: when  doctor sent me home with copious amounts of opiates to take whenever I was in pain, which was all the time.  I could take eight Percocet during the day, come home from work,  have three margaritas and still be sitting upright,  carrying on conversations and playing Crash Bandicoot until 11:00 at night.   The information I needed to survive the progression of scleroderma was not yet available in the 1990’s.  In fact, the last twenty years have been a string of events, while I wait  for the research to catch up.  I’m not saying that anyone is lucky to be diagnosed with scleroderma, but I will say that it’s better than being diagnosed with scleroderma  in 1994,when doctors would answer my questions about medication and alcohol with statements like:  You should do whatever you want, you  don’t have much time anyway.  

Okay, so here is what I did  with my methotrexate.   Big emphasis on the did.  I now have doctors who answer my questions without the premise, “Well, you’re going to die soon.  Have some fun.”

When I feel an infection (wound or surface) I will skip a dosage. Skipping vs not skipping,  has meant the difference between quick healing of an infected wound.  And yes, I have discussed this with my rheumatologists.  Things like colds or viruses- I don’t skip unless my doctor tells me to.  Another issue is when I do need antibiotics for a wound infection,  certain antibiotics  blocked in a pharmacist’s computer system because I am on methotrexate.  One example is Bactrim.  

I had a wound infection that would not go away.  My doctor prescribed me Bactrim, but when I went to go pick it up, the pharmacist tried to replace my Bactrim with Keflex.  It’s no secret I hate Keflex.  Hours after taking it, I would get a weird taste in my mouth and just the smell of Keflex makes me gag.  Sure, itworked for me for a while, but it no longer works for me because the wound infections I get now are antibiotic resistant.  So, I politely  told the bright-eyed pharmacy assistant who was just trying to help me, to hang on to that Keflex.  I had to go back and get my doctor to override the block.  When  my doctor entered Bactrim into the system, it activated a  “warning” built into the system to block contraindicated medications.  It blocked my Bactrim because methotrexate interferes with Bactrim’s effectiveness.  So, I went back to my rheumatologist, had her put a note in that the methitrexate had been discontinued, which it had for two weeks because when I have an infection that won’t heal, the worst thing I can take is an immunosuppressnt.  But you see, the computer had to be told that I had stopped methotrexate so it would allow the Bactrim.  And BEHOLD! Bactrim granted!  It took some communication to get the formulary corrected, but it can be done.  By the way, the look on the pharmacy technician was priceless.  A few weeks prior, we had a bit of a go round over Viagra, and I had that over ridden as well.  After getting them the information they need in order to follow my doctor’s prescription, feel an overwhelming level of satisfaction, like I should have a set of brass balls hanging from the drive shaft of my monster truck, which is super big because I am compensating for something else.

My point?  There is no way anyone can predict how our bodies will respond to medications, but we can work to prevent ourselves as individuals,  from being pigeon-holed into a treatment model that works for one group.  I have stood at many a  pharmacy window, and  glared at by pharmacy techs and pharmacists from atop their brick wall of formulary,  only to  return to their window as if I had just kicked  a twig off of my trail. Maybe it is all about how I perceive a problem.  The pharmacy saw themselves as a brick wall to save me from myself.  No one can save me from me, not even me.

One adventure with Methotrexate.

When I picked up my first prescription in 1996, to say I was frightened would be an insult to terrifying situations everywhere.  My three hour drive home was filled with thoughts of baldness, nausea and chemotherapy horror stories.  Luckily, I had no side effects from methotrexate.  My dose was titrated up to 25mg a week. My only side effect was fear.

Drinking and Methotrexate

I did experience three  Octoberfests on methotrexate,  and I survived with intact kidneys. If I could go back, I would advise me to be smart with my methotrexate.  Not  skip my blood work just because I didn’t feel like fasting.  (Done that.I never said I was a compliant patient all the time.) Drink lots of water, eat healthy and pay attention.  I would tell me, “Don’t drink Dumbass.    You don’t need to live like you are dying”.  (By the way, Live Like You’re Dying is a stupid song, and one of many valid reasons I still hate country music.)  

Methotrexate is  less a big deal than you think, but it is still  a big deal. It is a very strong drug and can kill you if you don’t pay attention.  Try not to panic.   Take the usual precautions you would regarding your health like avoiding alcohol, eating healthy and by practicing safe sex.   And by safe, I mean do nothing that requires the use a net and always establish a safety word, which  should never be “ouch”,  and you’ll be fine.  Notice I didn’t advise you to use a condom, because you already are smart enough to know that.  And if you need to be reminded to wear a condom, you do not have enough life experience to be reading my blog.  

Methotrexate is one of the most studied meds for immunosupression because  it has been around so long, and used so often.   My ex-husband credits the conception of our son because I took methotrexate the year before we conceived and after trying once before unsuccessfully.  

Of course, I was not on methotrexate when I did conceive- it just helped my body. In fact, methotrexate is exactly what you do not take if you are trying to have a baby.  But taking it to slow the progression of your hard to pronounce, incurable, autoimmune disease long enough to find yourself stable without it, before trying to have a baby was a good idea for me.  I was not going   to let some degenerative, fatal and hard to pronounce autoimmune disease stop me from having a baby who will one day grow into a mal-adjusted young adult in need of therapy because of his mother’s selfishness in her 40’s.  

You are smart and you probably pay attention to what you body tells you.  I always assume people who read my posts are more intelligent than I, and I have yet to be wrong.  You’ve got dreams.  Realize them.  Overcome the obstacles.     Move the twigs out of your way and get on with it.  People will think you’re moving brick walls, and it does wonders for the ego.   You’ve got this.

The Ice Bucket Challenge is going to help the ALS Association get closeer to a world without ALS.   Before you add the ice, take a few minutes and read how dumping a bucket of icewater over your head will help patients with scleroderma and other diseases, as well.  Then, enjoy your dunking!

My body has changed a lot over the last 20 years. My hands are severely contracted. I have been offered surgery to straighten my fingers, permanently and bending the top knuckles in a “hook”. I was told my hands would be more useful. I have refused this procedure more times than I can count. I refuse it because I believe that this is a plateau. Of course, I will never regain full use of my hands before scleroderma, but I still call it a plateau.  Progress is progress.  

Not only have my hands been damaged,there is scarring in my lungs.  In 2008-2009, the scarring in my lungs accelerated.  We don’t know why, but for some reason, it stopped.  The bottom left lobe is scarred, and the short answer is my lung volume is 85%.  I had been diagnosed with sarcoidosis in 2007 and was put on the biological drug, Influximib, brand name, Remicade.  It may be related to many symptoms being controlled but there is no way of really knowing, without further study.  Like ALS and cancer, scleroderma is very complicated.  All diseases are different, but none is more serious than the other.  Like everything different, we can find things in common.  By doing so with diseases, we improve care.  In other words,  patients of all diseases benefit from breakthroughs in research of different diseases.

Cancer is nothing like scleroderma, but what we have learned from cancer research benefits patients of both scleroderma and ALS.  Progression of scleroderma is slowed down by drugs that suppress the immune system.   I sometimes wonder if I’m grasping for straws, but as someone who has spent many hours sitting next to cancer patients, receiving immunosuppression drugs (aka chemo infusions, but not cancer chemo), I’ve seen enough to know that as horrible as cancer is, I have benefited more than I will ever know from past cancer patients.  Oncology nurses , who specialize in cancer care, are amazing, and I have never had to train an oncology nurse on how to put in an IV.  I’ve had to train calm down a lot of nurses many nurses because of their lack of experience starting an IV in patients with thickened, hard skin.  Thanks to an IV nurse’s suggestion, I have a port-o-cath.  It had once been suggested to me by a rheumatologist, and I refused.   I felt that getting a port-o-cath meant I was near the end.  Getting that suggestion from an oncology nurse in a room full of chemo patients,  allowed me to ask about use not just from the nurse, but from patients sitting next to me.  Now, the port I have in my chest to allow the ease of IV medication, was not designed to help patients with scleroderma.  The inspiration for use doesn’t matter, because the principals are universal.    It was put there because doctors know that a port-o-cath would  make it easier to administer IV medication, reduce  stress, infection and keep my otherwise overused veins,  intact.  Of course, my rheumatologist happily ordered the procedure for me. It didn’t matter to them nurses made it easier for me to understand, they were just happy I was taking a positive step to make my life a little easier.  And, I was really relived when I saw that my cleavage is still spectacular with a port-o-cath.  

What about long term patient care and hospice.  These things are all needed by many patients with scleroderma, but scleroderma is so rare compared to cancer if there were no cancer treatment, there would be no scleroderma care and treatment.  We have also learned a lot from ALS, or Lou Gehrig’s Disease.  Do you see the connection?  Care and so much more.

Ice Bucket Challenge

So please, take The Ice Bucket Challenge, and help to create a world without ALS.  It helps us all.  But I would be crazy not to mention that I am raising funds for the Scleroderma Foundation.  My son and I will be walking this Saturday in San Diego, California.  So please donate to ALS Assciation, then please visit my donor page and donate a dollar or two.  I’m asking for such a small donation, because there are many diseases that need curing and a dollar or two leaves you the option to donate to another association.  No disease needs more donations than any other; all of these diseases need to be cured.  In addition to research, non-profit  associations, foundations and organizations also provide doctor, patient, caregiver support and education.  We may not be fighting the same battles, but we are all in this war together.  Thank you for reading.

 

Okay, maybe not the best, but it helps.

I started writing this blog in 2009.  If you have been along for the ride, you have seen my writing evolve from sub-par to adequate.  Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be performing.  Why?  Because I talk about scleroderma.  I also posted this because I want to show other scleroderma patients there is hope, but you have to fight.  I did.  And now I have this warped sense of humor.  (I had the warped sense of humor before, but now I do it with more words of Latin and Greek origin.)

 

Look, I never wanted to be a “scleroderma comedian”, but with my hands, it’s really hard not to talk about it.  People have questions, and merely my medication gets a laugh because it’s so hard to believe.  But this has to start somewhere, and why not with something that creates laughter.

I don’t think having scleroderma is funny.  In fact, scleroderma is very scary to patients and those who love them.  But the mistakes I have made personally, and ways I cope with it, are funny to me.  So, I’m going to get people to laugh, and learn something, as well as show the world that with educated doctors and medical practitioners who will fight along side their patients, patients can survive.  Nothing will ever trump a cure, but for now, I’m going to laugh at what scares me.

Thursday, July 10, I will be at Aces in Murrieta, California, for open mic.  (Yes, that Murrieta.)

Saturday, July 19, I will be performing at Hot Java’s Deaf Comedy Jam in Long Beach, California.  

I had a fantastic holiday weekend.  I hung out at my aunt’s house in Lancaster for four days with my Aunt Carmen, and ,cousin Karen (yes, she is my namesake.)

I have always looked up to my cousin Karen.  The first time I visited her home in San Jose as an adult, was in the 1990’s.  It was surreal for me to be doing grown up fun things like drinking margaritas, and laughing until the late hours of the morning. with her  Karen is actually my dad’s first cousin, she was an adult when I was born, but the years did not keep me from somehow inheriting  a lot of her personality traits.  The good, the bad,  and the crazy.   This past Saturday night together, we laughed because back in 1995, we were drinking tequila shots at 11:30pm, and this time at 11:30 pm on a Saturday night,  she was removing a knife I had lodged in a Granny Smith Apple.

We spent three days lounging and visiting while  watching CSI Miami.  I had never seen CSI Miami before, and  my favorite part is the beginning of the show.    Horatio (David Caruso) begins a comment, puts on his sunglasses, makes a potentially  profound statement about his comment, followed by the primal scream in the show’s theme song, “Won’t Get Fooled Again”, by The Who.   I wish I could find a way to have the scream cued up and play, every time I put on my sunglasses.  *sigh*

During my research of Horatio’s sunglasses, I stumbled upon the top 10 Jason Statham moments on YouTube. The only thing better than a Jason Statham fight, is a Jason Statham fight when he’s wearing only boxers.

What were we talking about?  Oh yeah, Yoga… with my Aunt Carmen {puts on sunglasses and walks away.}

That Monday morning following the  relaxing weekend, my aunt and cousin invited me to join them on their adventures, which turned out to be a healthy routine I envied.   At 9am,  I found myself in a senior citizen’s stretch class with my cousin Karen.

Last year at this time, I was doing Krav Maga classes.  That 45 day hospital stay really took a toll on me and now, I’m easing into activity.  Last year, I would have punched you in the neck, Jason Statham-style, if you told me I’d be in a stretching class for seniors.  Stretching is stretching and these seniors had a great program that would give a few 20-year-old I know, a run for their money.  I have always looked up to my cousin Karen.  This was the first exercise class we had ever been to together, and I was happy she invited me to go along.

About 15 minutes into the class, not only did I realize I was probably the only person wearing thong panties, I became acutely aware of how inspired I was by my fellow students in the class.  My biggest fear in the early years of my diagnosis was that I may not live to be a senior citizen.  Today, this rag-tag group of perky seniors gave me hope.

There are many things I have resented about having a progressive, degenerative illness at a young age.  I missed 7 years of my 20’s and spent all of my 30’s in doctor’s offices, hospitals and physical therapy rehab office visits.  But, I lived to tell about it.  Now I’m in my 40’s and I feel like I have my whole life ahead of me. I miss my 20 year old body, I’m not the first person in her 20’s to be ill and I certainly won’t be the last. And today,  there I was stretching with some old people and felt comforted that there was something I could do about my health. The students in this stretching class really stoked the fires of my inner control freak, and it was a great feeling.

There were cancer survivors, a 92 year-old women who still drove herself to the Senor Center every day, and there was my awesome cousin working hard to keep herself healthy, and able.  This health thing does not happen by sitting around.  You have got to get out and leave, especially when it’s hard.

Recently, my Aunt Carmen was unable to walk because her muscles had atrophied as a side effect of some medication.  She spent some time in a rehabilitation facility, where she learned to walk again.  When she returned home, she didn’t want to go anywhere, but my cousin Karen, got her moving.  It would take lots of convincing to get my Aunt Carmen in the car, but luckily, my cousin Karen is very stubborn and wouldn’t take”no” for an answer. When they would return, my aunt felt significantly better.   Now, these two have a great thing going on every day- and today, I had the privilege to join them on their Go-Go-Go! adventures.

After walking our dogs in the park and stretch class with my cousin, we ran back to the house to pick up my aunt for chair yoga at their local wellness center.  By the way, these activities are free to them, thanks to Medicare.  When we arrived, well- my cousin Karen has this amazing outgoing personality and of course, she gets that from her mom.  These two just light up a room.  I hadn’t seen my aunt this active in ages.  She introduced me to her friends, showed me around and then we took our chairs in the activity room.

 

We did some Thai Chi, then sat down on metal folding chairs with big comfy cushions.  Chair yoga gave me quite a work out and I felt so relaxed after.  The best part, was doing chair yoga with my 87 year old aunt and my cousin (who would kill me slowly and painfully, if I disclosed her age).  Three generations doing yoga together, so we could all be together, longer.  You’d think I would have taken a picture, but no- we were just to busy enjoying ourselves. And you know what?  I almost did not go to visit my aunt and my cousin, because I didn’t feel well.  I haven’t been as active as I used to and I get tired easier.  Or at least I used to.  Hanging out with my Aunt Carmen and my cousin Karen, was just the kick in the pants I needed.

So, if you have scleroderma, sarcoidosis or any debilitating disease, and you turn down an offer to go somewhere and do something, please reconsider.    It is hard not to be discouraged by pain.  And things will not always go as planned  It may be hard to get out.  It may be hard to move when you get there, but don’t pass up an opportunity.  You may be sore when you get home, and have to rest, but getting out is worth it. Life moves pretty fast.  Don’t miss it.

Editing note:  I originally published this post spelling Tai Chi, Thai Chi.  I left it, because it’s funny.  ~K

 

You’re welcome.

 

 

 

I have been given morphine the entire time I have been hospitalized, until a few days ago.  While experiencing withdrawal symptoms.  It has become an awakening experience of both mind and body.

 

Better Hydration

I cannot drink enough water.  Really, I can’t drink enough water.  I am so thirsty and water is so delicious.  With the proper ratio of ice to water, it is pure bliss.  And I can’t get enough of it into my body fast enough.

 

More Energy

I went to kinesiology on my non appointment day begging to ride the stationary bike.  Okay, begging is a bit of an exaggeration.  I asked, they said yes.  Whatever.  I’d been exercising in 10 minute increments and I rode that bike for an hour.  I felt great.  Endorphins anyone?

 

Fearless Self Expression

One of my doctors came into my room to ask how I was doing.  I started crying and said something like, “I have no idea.  How am I?  Is it just me? Or does this room feel smaller? Is someone barbecuing pork?”

 

Then I abruptly stopped crying and told him my brain feels weird.  I was offered a sedative.  I happily accepted.

 

A Time of Reflection

I Love Talking to Psychiatrists.  No, not for analyzation,  but about all the crazy things our brain does.  I really should’ve followed though with that acceptance as an LCSW for San Diego State.  I could have a really cool job if I didn’t have to spend so much time at the doctor. And I would be doing much  better finically by earning a solid nest egg working in strip clubs during my 20’s.   Shoulda, coulda, woulda.

 

A Treat for the Senses

Transient moments of the smell of pork.  I opened a box of Cheerios this morning and had to get confirmation from a nurse that it did not smell like pork.  Not bacon, pork.  In fact, last night, I went into another room and smelled pork.  Do I smell like pork?  I’ve been holed up in this room for over 40 days.  Maybe I smell like pork.  I’m currently receiving my antibiotic infusion and as soon as I am detached from this IV,  I’m taking a long shower.  Everyone has a natural scent.  What if natural essence has become  pork?  But can we really smell ourselves objectively?   My cousin is coming by later.  Im going to ask for an honest answer.  After the shower, of course.

 

Plenty of Remedies

Why does it seam rational to use an herbal remedy to detox from a chemical that’s kept in a locked cabinet?  Do a search for opiate withdrawal and you will there is no shortage of “natural” remedies to make it go away.  Look, the only person you should listen to about how to properly withdraw from opiates and all drugs is to ask a doctor.  People read a blog post about their “success” and call it research.  Someone once read me something disguised as news and name “a reliable source” as their source.  Let me say that again: Source: “A reliable source”.  Everybody’s a doctor.

 

Okay, that’s all the writing I care to do.  I’m going to do some sanskrit chanting after drinking these four glasses of water,  and take a shower.

I’m still in the process of transferring posts to The Mighty Turtle’s new home on Blogger.  Please enjoy this drawing I stole from Google images, then head on over to the “new” site.