Getting The Full Picture

 

Ever notice things in a photograph, you didn’t see while you were posing for the picture?  Here is what I have learned about my own behavior and mental health with a “photograph perspective”.

Finding the right antidepressant is no easy task.  So when we find one that does the best job with no side effects, or manageable side effects, it’s like someone threw a dead tree in your path, and the only way is to climb over it.  Of course, after taking a medication for years, I don’t always keep up with updates.  Every medication is not for everyone.  It’s a fact and quite honestly, it seems like common sense, but most of us never read labels.  Think about it.  Labels are updated as more information becomes available through research.  I don’t know if you are like me, but when I pick up a prescription I have been taking for years, I get a ten page document citing possible side effects and risks, and I hand it back to the pharmacy technician, and tell them to shred it.  I could wallpaper an entire housing development with all the medication information I have received.

Scleroderma
Side effects happen with all medications.

A few days ago, I was reading a blog post about a woman who quit Cymbalta cold turkey.   Sure I was a little shocked by someone talking about quitting a medication cold turkey with a possible side effect of suicide for some.  But this post by Crystal Lindell about Cymbalta, taught me an important lesson about how I form some opinions. I put down my iPad and started writing about how wrong she was, until I realized I was on a rant.  So I went back to her post, and followed links to her referenced prior blogs for more of her experience.

In an earlier post, she talks about how Cymbalta saved her life.  You should read it, 

Ms. Lindell’s post struck me on a personal level because my depression triggered by the pain and progression of my chronic illnesses changed the chemistry of my brain, and I nearly died.  Our experiences had similarities, but they were not the same.  I found myself comparing my issues to hers and thinking, “she’s wrong”, when it was I who was wrong.  Sometimes, I think I am using empathy, but it’s really not.  Instead of imagining what it would be like for them, I imagine what their experience would be like for me.  Yep, that sounds about right.  I make it all about me.  It kind of reminds me of “Do unto others, as you would have done to you.”  But most of the time, what might be right for me, would not be right for others.

I’m not sure if it’s because I am selfish.  For years, I have had to advocate for myself as a woman in a health care system designed for men (Veterans Healthcare) with two rare progressive, degenerative and potentially fatal conditions.  I realized I might be too self focused the day I brought my newborn son to his first pediatrician visit.  His doctor asked for my son’s medical history and out of sheer habit, I rattled off my own medical history.  It wasn’t that I put myself before my kid, it was just that answering that question had become so routine for me, I had an automated response.

I talk about it in a prior blog post.  and since seeking treatment for depression in 2000, I have changed medications many times. There were medications that put me to sleep, some that killed my libido and I have skipped doses of Cymbalta waiting for my prescription to arrive by mail and I can say that having sex during that time is pretty good, sex.  But taking myself off medication that did not reduce my libido, but my libido increased without them, was not worth risking my mental health.  Luckily, thanks to age and wisdom I know that  if I have amazing sex once, it can happen again.  So  I need to train my brain, so to speak.  Our mental state affects our sex.  The actual sex organ is our brains.  I know it doesn’t seem like that, but the response to it, is made by neural transmitters, nerves and hormones.  Look, if a medication completely shuts off your libido, like Paxil did to me,  it was the right decision for me, to change meds.  For me, Cymbalta had some side effects, but they were solvable with the addition of Welbutrin and training my brain.  The cool thing about that, is you can always find a willing participant (in the name of science, of course) to experiment with sex by trial and error.   And  as the brilliant Amy Schumer  put so eloquently, “…I can catch a dick whenever I want.”

For me, going off Cymbalta was not an option.  I did it for two months.  I handled the brain zaps and withdrawls with a little help from sedatives and pain meds prescribed by my doctor.  I was closely supervised by my psychiatrist and General Practitioner.  After two months,  the symptoms of my depression came back.  Lucky for me, I have a support system in place to check my depression.

When there is a change in my medication, or a potential trigger, I reach out to three people I would trust with my life, and ask them to watch for symptoms.  They don’t watch over me 24/7.  But they check in with me and ask me about triggers.

Triggers and Symptoms
I am diagnosed with Major Depression and Anxiety Disorder.  I’ve had years of therapy to determine my triggers, like specific people or events.  The people or events can be present, noticed and experienced without going into depression, but symptoms can be triggered by these events and or individuals.  Individuals do not trigger things on purpose, but we all have friends or family who bring us stress with their behaviors or conversations.  I had to learn to recognize the symptoms of the beginning of my triggered depression.  One of them I did not identify until 2004.  It was just after my son was born.  I was driving home with my sister in-law and my nephews and I had to drive on an overpass.  If you’re a southern California resident, it’s the one that takes you from the 91 east to the 15.  I was about to drive onto the ramp and I felt a nearly crippling fear of going on to the over pass, but because I had people in the car and it was in the middle of the night, I slowed down and drove extra careful.  I calmed down as soon as I was on the 15.  I had recognized this feeling before, but my fear was so intense, I knew I needed help.  I spoke to my therapist, and sure enough, an extreme fear of going over bridges is actually a thing. The depression had affected my “fight or flight” response by making it sensitive to activities.

Unlike Ms. Lindell, Cymbalta does not kill my creativity or sex drive.  I guess I’m just lucky.  Not every medication is for every one and not every pharmaceutical company labels their medication as accurate as they should be,  I have been on perhaps a dozen antidepressants in the past fifteen years.  There were some that gave me no sex drive, there are some that put me to sleep.  Right now, I’m on Cymbalta & Wellbutrin, with no sedatives.  I have some, but I don’t take them.  I guess it’s comforting to know they are there.  And I have to agree with Ms. Lindell that exercise is the best medicine for my pain.  But to battle my depression without meds, I need to do at least ninety minutes of cardio twice a day to keep me from falling into the abyss.  So exercise once a day and meds is a good mix for me.  Cymbalta may not work for millions of other people, but right now, it works for me. And when Cymbalta stops working, I will tell my support system what’s up.   I don’t need to be watched like I’m under  house arrest.   But by letting my friends know,  they are more likely to answer my phone calls when they are busy, or return my call immediately if they miss it.  There’s nothing wrong with having a plan.

About the good sex:  Well, I went from having no interest in sex because of my meds, to finding the right med that would allow me to feel like I might be interested.  It took changing  medication, yoga and exercise that helped and now my sex life is pretty damn good.  Like anything, it’s trial and error, having a good team of doctors ad having a willing participant to help with training your brain.

As for quitting any antidepressant cold turkey, I would not encourage anyone to do that without a doctor’s supervision and a group that will help observe your progress.  You don’t need to make a big deal of it.  Take three people and use them.  I never use only once person,because one observation, could be the wrong observation and two others can help counter the error.  One way to think of it is, when you are getting your picture taken, you really don’t know what’s going to show up in the photograph, until you can look at the picture itself.  Those three friends of mine help me identify what I can’t see while I am present in the “picture taking”.  It never hurts to have an extra set or two of helpful eyes.

People Who Claim to be Pro-Life Confuse Me.

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.

Forget Scleroderma. My Credit Score Is A Bigger Problem

Unlike most Americans with chronic illnesses, in addition to Social Security, I have Veteran’s Benefits.  This has put me in a unique position.  It is why I am not afraid to seek medical care outside the Veteran’s Healthcare System and put myself in debt.  It takes more than a bad credit score and overdraft fees to scare me.

 

Last November, I was in a hospital for forty-five days.  During that time, my car had so many tickets it was towed and repossessed by GM Financial because the impound fees were higher than what my car was worth.  It didn’t matter that I was in the hospital in danger of loosing my foot.  I was told by the City of Long Beach, that these fees could be waived, but I had to show up to the courthouse, in person.  And not when I was finished with my foot-saving treatment.  I needed to be in court tomorrow, because parking tickets are very serious.  And being in the hospital is no excuse for missing court.  I guess I could have gone, but I risked missing an antibiotic infusion, and an  injury that might cost me my foot.

I bet you are wondering where my friends and family were at that time.  They were helpful and supportive, but you know what?  They are not made of money, they also work and have children and need to take care of themselves.  As far as I was concerned, focusing on the care of my foot to prevent loosing it, trumped any concern about loosing my car, because cars can be replaced.

Of course, the phone calls from bill collectors never stopped.  One conversation went something like this:

Me:  “Look, I need two different antibiotic IV infusions, three times a day.  That is six infusions.  And if I so much as bump my foot, it could cause the infection to spread.  My doctors are trying to stop the infection from killing the bone in my foot, so I can keep my foot.”

GM Financial Customer Service Representative:  “I know you might loose your foot, but if you don;t go to court tomorrow and fight these impound fees, we will repossess your car.  Karen, I know you don’t want to risk having fees.”

Yeah, because a negative credit report was my biggest problem.

I swear this happened.   This GM Financial Customer Service Rep told me he thought I should be more concerned about saving my credit score, than saving my foot.  And GM Financial was not the only creditor who said this to me.  I only leave out other creditors because I’m too embarrassed to share the name  of one company.    I agreed to take on a predatory loan because it provided a short term solution.  I pay them every month because they will call my references.  I can live with paying ridiculous interest rates.  I can’t live with the stress of asking someone I know for a loan to clean up a mess I created.  And someone who loans me money might suggest I forgo care outside the VA, because I cannot afford to pay co-pays.  I’m on a first name basis with medical collection company customer service representatives, and that keeps me from worrying about judgement by friends and family.  I got myself into this mess.  And I may repeat my mistakes.  Not because I am stupid, but because I have changed VA hospitals twice in 12 months because I was shoved into the patient model of the 65 year old diabetic man, the treatment protocol by the Long Beach VA, outside the Women’s Clinic.   And that is a whole other post.

Like most things that happened while I was in the hospital, things like my credit score went on to a list called, “Things that can wait until after I make sure I get to keep my foot.”

I had been hospitalized many times before for infections in my feet, and I was not about to risk loosing my foot because of an injury I might incur while going to the Long Beach City Courthouse to fight the fees to keep my Toyota Camry.

I am not innocent in this, either.  I made my bed by not parking my car in the parking structure a half mile away.    A few days before I went into the hospital, I decided to use the handicap parking spot next to my apartment.  No one was able to get to my car before it was ticketed during street sweeping and then towed because it was one of two handicap parking spots.  Other people with disabilities needed it.  If I had a family member who needed that spot and I saw a car just sitting there for days with tickets on the windshield, I would ask the cops to tow the car as well.  Of course, I did not think about this scenario.

For some reason, bad credit scores and overdraft fees do not frighten me.  Maybe it’s because I have faced death so many times, or that I will do anything to avoid damage that will cause more disability.  Look, bad credit scores can be repaired.     Overdrawn checking accounts aren’t sexy, but let’s face it it’s a win-win for banks, and me. I’m picking up the tab anyway.    My bank gets to profit  from my overdraft fees, and I don’t have to choose between replacing my contact lenses or taking my son to the dentist.

Life with a  negative balance is a choice disabled Americans like me, make.  I only lost my car, but every day I read about people who are unable to get care they need because they only collect Social Security Insurance.  They don’t have a consistent flow of funds every month to cover a negative balance to get their foot in the door at a hospital or doctor’s office to prevent illness or injury.  Every day, people “walk it off”, and wait for treatment or evaluation because they cannot afford it on their $1076.00 they get every month from Social Security Disability. They do things like buy their children food and pay for things like the dentist and glasses. How is it that people who barely receive enough money to pay for rent and utilities, are expected to pay co-pays for procedures and tests they need to prevent further injury, disability or death?    Why is it perfectly acceptable to ask Americans unable to work because of their disability to live just at the poverty level?  Because we have accepted it’s okay to do things like cut our medication in half so our insurance companies can save money. Or that it is normal to wait for medical procedures or tests, then pay for  20% of the cost after an insurance company decides they’re going to pay a portion of it.  We pay monthly premiums to insurance companies so insurance companies can pay pharmaceutical companies for the cheapest treatment available.  Not the best.  First we must try the cheapest medication and risk failure, damage and death.  For Pete’s sake who is going to pay for all of this?

I am not innocent in all of this.  I had not appointed someone with power of attorney, to act on my behalf.  There is no excuse for that.  But to be honest, I don’t trust anyone enough to act on my behalf.  I fear judgement.  I fear they will tell me that I should consider living with someone else, and that if I don;t comply will remove my power to have any say in how I love my life.  People have done things to help me, and what I find myself doing after they leave is rearranging my apartment to suite my needs.  It has been my experience that when people help me, they do things they think would work best if they were in my shoes.  But they are not in my shoes.  And just because something is hard to do, it does not mean I should not do it.  The hardest thing for me to do is give up.  Sure, it might ease the mind of my family if I would just live in an assisted living facility, or had a home health care assistant.  Here is why I can;t do that.  It means the difference between having someone in a nurse’s uniform show up twice a week for three hours a visit.  I tried it when I got out of the hospital.  I have places to go and things to do.  I found myself canceling these visits because I did not have six hours a week to have someone come over, do a half-assed job of cleaning and stand around for the other two hours because the contractor required a minimum of six hours a week to make it worth it to have someone drive out.  I just needed someone to show up, clean my house and go home.

So you see, I can ask for help, but it will only be covered by the Veteran’s Administration, but only if I act like a proper sick person.  We have a sick-care system. And anyone trying to live a full life with their chronic illness gets to live in fear they will loose their benefit if they try to live independently.  Luckily I can get away with it because Veteran’s Disability Benefits cannot be taken away.  But what about those who cant?

For more about my experience with Social Security, Paying People to Stay Home

The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

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.

 

Scleroderma Awareness Month

 

Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and all of this needs funding.  All of the activities I just listed, are supported by donations, grants and volunteers.  Every June, we unite to support the research, education and patient assistance.  We share memes, we wear teal, write letters to the editor and/or  we gather in parks and walk to raise funds for research of scleroderma.

So if you stop reading this post here, you have read the most important part of it.  Thank you 🙂

I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine.  I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.

Back to being sick and tired of writing about being sick and tired…  So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases.  Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured.  In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients.  I look forward stories of hope, memorium, and humor where we can find it.

You might be thinking two questions:  ”

1.  Karen, how can I possibly laugh at a time like this?

2.  Are you high?

The answer to your first question is that at the most serious of times, I have found a way to find humor.  Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next.  It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present.  On the science side, laughter also releases endorphins, and helps our brain cope with situations.  Laugh at what scares you.  It will only make you stronger.  (Go ahead, research how laughter is the best medicine.  Millions of Reader’s Digest readers can’t be wrong.)

My answer to your second question:  No, I’m not high. (As far as you know.)

I do mean it when I say I am sick of scleroderma awareness.  There are great organization making breakthroughs in treatment, and clues to a cure.  If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure.  Our lives depend on it.  Thank you.

 

I Suspect My Family Is Planning an Intervention.

I have made lack of long term planning an art form.  

I think I have come to grips with what is really bothering me.  In October, I was doing well.  I had established a routine I loved.  I was exercising,  scleroderma seemed to have run it’s course and it felt as though the clouds in my brain had parted and beams of sunshine warmed my mind and spirit.  While all this happiness was going on, I neglected one thing: Preparation.  I had not prepared for unexpected complications.  I had local support from friends and family, but there was no plan on for a long term, unexpected hospital stay.  Brilliant!

 

My failure to be prepared has been haunting me these past couple of weeks.  I had a few days of deep depression, until I stopped bouncing off the walls and bounced out of bed.   I accepted my feelings that I was irresponsible and selfish about this.  I am 43 years old.  I should have known better.  I have two chronic illnesses and there is no reason I should not have my affairs in order.  Not because I think I’m dying, it’s my responsibility as an adult.  No excuses. Just onward.

 

Today, I Get Organized. 

And I have someone to help me do it.  I was authorized Homemaker Assistance by the Veteran’s Administration for 90 days.  Twice a week, I have a helper.  She started last Friday.  I was a bit worried  the company might send someone who would not be happy about helping someone with laundry.  It;s happened before.  In the 2003,  I was authorized a home heath helper.  The helper came and when she found out there would be house work involved and I could dress myself, the next week I was sent someone who my ex-husband thinks stole DVD’s and had a whole host of personal problems she brought to work with her.  But not this time.  I was sent an amazing woman who not only showed enthusiasm to help me and inspired me to keep going.  I felt stronger for three days after her first visit.  I am not sure how to explain it.  I never felt like I was helpless and overwhelmed when she was here.  I felt empowered and was reminded by doing, that I am still capable.

 

Arthur Fonzarrili’s May Be My Distant Cousin.

Remember the show Happy Days?  (Oh you don’t?  Google it youngster.) Remember the character, Fonzi, would never say he was wrr-wrr-wrr-wrong?  I would not ask for he-he-he-help.  I would take boxes of files and set them in my living room with the intent to organize.  Then I would get 15 minutes into it, injure myself or find an obstacle and stop.  I moved here in August.  Here are the files I intended to organize.  It’s JANUARY.  These boxes have been sitting in my room since August.  That bag on the left, that’s last weeks laundry.  I’m not sure, but my family may be in the process of planning an intervention and I don’t blame them.  Hopefully

 

When I got out of the hospital and the VA Hospital Social Worker called to see how I was doing, Instead of my almost reflexive answer, “I’m okay.”  Instead, I calmly explained what I needed in terms of assistance.  She, a nurse practitioner and another social worker found a way to get me approved for assistance at home.  The VA is still working out the kinks of catering only to old men.  They have made a tremendous amount of progress, but there is always unexpected ground to break in any system.  And in this system, I am so thankful to work with some of the finest human beings in health care.   So, onward.

 

I have to go now, she’ll be here in 15 minutes.  Maybe I will post a picture of that as a corner empty space tomorrow.  Who knows, anything is possible.  Happy Wednesday!

My Letter to Congress to Urge Funds for Scleroderma Research

Picture of the White House

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist.

Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc…

To get started now, click HERE

Here is the response I received and a copy of my letter:

Your Letter to the President and Congress

 

Karen, thanks for taking action on behalf of Petition2Congress. Your messages are on the way.

 

An individual copy of your letter will be sent to each official:

 

August 7, 2013

 

Dear President Obama,

Dear Representative Lowenthal,

Dear Senator Boxer,

Dear Senator Feinstein,

I was diagnosed with scleroderma at age 23 by the Veteran’s Hospital in Madison Wisconsin after having symptoms in the Navy. I am still here because I had access to healthcare and treatment I often had to fight a male-centric healthcare system. The VA has improved the treatment  f female veterans exponentially. However, there are many patients who are not getting the proper diagnosis and treatment I was able to receive. This need to change. It starts with research, and we have lots of work to do. You will be hearing more from me at TheMightyTurtle.com & a page I started to introduce the possibility of surviving scleroderma: Unstoppable Me: https://www.facebook.com/pages/Unstoppable-Me-Karen-Vasquez/217918321693555

 

Loma Linda VA is overcrowded, like many VA’s across the country. I recently relocated to be closer to a VA that could help me manage my care in Long Beach, California. Not every patient has the luxury to be able to move where there is not only a great medical facility, but family and friends nearby.

 

One thing I have learned and has been found in research, is that many diseases have similar symptoms and research of other diseases has led to effective treatment of different diseases. For example, I also have sarcoidosis. I was diagnosed in 2007 after fighting doctors to do further tests to determine my symptoms were not just scleroderma. After my diagnosis of sarcoidosis, I was prescribed Remicade, normally a treatment for rheumatoid arthritis. My symptoms are now under control and I appear to be in remission with medication. I also take viagra 4 times a day, which was originally designed for infants with pulmonary arterial hypertension. I was the very first female at the Loma Linda VA to be dispensed Viagra. Getting Viagra did not come without a fight and months of waiting. Many patients do not have time to wait for approval and are dying as a result.

 

I urge you help. People are dying simply because they lack money and resources.

 

Thank you,

 

Karen Vasquez

 

And now, the formatted letter:

 

Congress, please support this Petition by directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma, development and evaluation of new treatments, research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome. Establishment of family and “childhood-onset” patient registries. Support for the training of new investigators. Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.

 

This Petition is very important to patients and family members living with Scleroderma. Thank you in advance for your consideration of this Petition.

 

Sincerely,

 

Ms. Karen Vasquez

Long Beach, Ca

 

You can still also have your letters printed and hand-delivered to each official for just $3 each.

 

Thanks again for taking action, and keep this email for your records.

 

Also, be sure to visit http://www.petition2congress.com/ for more important action items.

 

 

 

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Scleroderma Is Not ‘Just A Skin Condition’

 

I recently spoke with a customer service representative at the Social Security Office.  She is tasked with asking questions, and making recommendations for the person seeking help.  So, I did a little research.

Today, I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As a patient with scleroderma for 20 years, and diagnosed with sarcoidosis after years of symptoms, these steps sound very nice, but are a bit unrealistic.  Don’t get me wrong, these are great ideas in a perfect world, but the world of healthcare in the United States is far from perfect.  So, I’m going to comment on each step.  Please Note:  This is entirely opinion based on my experience.  If you find my comments useful to keep going, and not be deterred, awesome.  If you would like to tell me to go to hell, awesome.  Let me have it in the comments section.  I make some comments in this post that may incite retaliation.  I’m okay with that.

If you have healthcare where you are never denied a test or medication, this is the perfect plan.  The following steps are verbatim from The Agency for Healthcare Research and Quality.  My comments are in italics.  

Step 1: Take the time you need. Do not rush important decisions about your health. In most cases, you will have time to carefully examine your options and decide what is best for you.
– In 1994, there were very few treatment options for scleroderma.  I was given a leaflet and a nifedipine prescription and sent on my way.  My choice was to quit nursing school based on no information, move back to California from Wisconsin and get lots of rest, or stick with nursing school with no idea what to expect.  It took two years to get diagnosed with scleroderma.   Luckily, I was in the Navy for one year and half of that time.  I did not miss a paycheck because I needed to stay home sick or go to a doctor.  How would that work for someone else with no job, because they called in sick so many times while trying to get diagnosed with weird symptoms like blue hands, swelling and nerve pain.  Sure, my diagnosis was 20 years ago, a lot has changed because of research, but people in remote areas are having trouble getting the right diagnosis and care.  Just do a google search of scleroderma blogs and you will read how patients are trying to get a diagnosis or care, or getting denied disability benefits because they do not have the proper diagnosis yet, because their doctor is unfamiliar with scleroderma and thinks it’s ‘just a skin disease’.  In a recent conversation with a representative of Social Security researching adaptations for patients with scleroderma, she asked, “Why would someone with scleroderma need adaptations?  It’s a skin condition.”  I explained to her that scleroderma was not.  She was very receptive to the information I provided her, but she is one of many, who are trained to speak with people in need of life saving benefits and she thought Scleroderma was a skin condition.  We have lots of work to do! 

Step 2: Get the support you need. Look for support from family and friends, people who are going through the same thing you are, and those who have “been there.” They can help you cope with your situation and make informed decisions.

Lovely.  In a perfect word where family and friends understand that a chronic illness cannot be seen, this is a great idea.  The truth is, many patients suffer for years before diagnosis, because they feel crazy telling people they trust their symptoms and they are met with responses we have all seen in memes all over the internet.  Oh, where to begin!  Here are a few:
1.  You don’t look sick.  Check out The Spoon Theory by Christine Miserandino. It’s a great post about “Not looking sick”
2.  It’s all in your head.
3.  You need to exercise more.
4.  Then, there is the gossip some experience:  She’s a hypochondriac.
5.  Scleroderma sounds like a skin condition.  It’s in the name, so it must not be serious.
Okay, enough of that, you get my point.  First, we have to explain what scleroderma is to our family, while we try to grasp what it is, without panicking during every search on Google because people post wort-case to get attention for awareness.  I can’t blame them for trying, but it leaves little hope to newly diagnosed patients.  More and more patients are surviving scleroderma, but only those who have access to the best healthcare and educated providers.  

Step 3: Talk with your doctor. Good communication with your doctor can help you feel more satisfied with the care you receive. Research shows it can even have a positive effect on things such as symptoms and pain. Getting a “second opinion” may help you feel more confident about your care.

Speaking of doctors… When I moved to Murrieta, doctors here had only heard of scleroderma.  They mistook my syptoms of sarcoidosis for scleroderma symptoms because they knew nothing about sarcoidosis or scleroderma.  First, a patient has to find a doctor willing to do more than give the diagnosis and “wait and see”.  Make sure you are seeing the right specialist, a rheumatologist.  Not to mention getting baseline tests of lungs, heart and upper GI.  Now, if you are newly diagnosed, have a full time job and have “Golden Insurance”, this is not a problem.  I have a request: If you have an experience to share, share it in comments to encourage other patients not to give up.  This is a journey riddled with roadblocks by people paid to keep cost down.  We have to become our own best advocate.  And by we, I mean you who are reading it who are frustrated.  I have to drive 2 hours one way to get the proper treatment for my hands.  It sucks, but it is what it is.  I bring my dog and stop at the beach after.  I do it because since 1999, OTs at two nearby Veteran’s Hospitals would not work on my hands.  I was told I was a lost cause.  Since stopping the OT I received through the Wisconsin Veteran’s Healthcare System, my hands have since atrophied and now we are working to get some range back.  

Step 4: Seek out information. When learning about your health problem and its treatment, look for information that is based on a careful review of the latest scientific findings published in medical journals.

Visit at a hospital, or medical school library and ask the librarian for help.  Medical journals often post only abstracts of a study online, which is a short blurb about findings.  Google it without experience and it’s the perfect way to diagnose yourself into thinking you are dying.  Before you research, ask your doctor for the proper keywords and journal names.  I don’t want to deter you, I want to encourage you to find research foundations that research your specific condition.  For Scleroderma in the United States, I recommend The Scleroderma Research Foundation.   Their funds go directly to research and education.  They have one office.  As far as fundraising goes, they are nationwide.  The Scleroderma Foundation is a great place to go for support groups, education and research as well.  They have chapters all over the United States with many offices around the country.    Many are all volunteer, some have paid staff amd some are simply support groups.  They provide great services, and funds are raised for each region.  

Watch your back, Jack.  There are some online patient communities that offer counseling services without licensed counselors or ask you to donate to participate.  I am sure they do some good, but they claim to offer counseling services by unlicensed counselors.  I once worked with a former mentor (emphasis on the word former) placed plants in her closed groups in the early days.  And I have noticed there is a bot that initiates contact with people who tweet certain diseases, on behalf of my former mentor’s newly formed foundation.  But, don’t take my word for it- or anyone else’s for that matter.    If you find yourself in a group and it doesn’t feel right, go with your instincts.    If you see a group going after an individual or shuns members, that is a huge red flag. 

Step 5: Decide on a treatment plan. Work with your doctor to decide on a treatment plan that best meets your needs.

Great idea.  A treatment plan is an awesome idea!   Now the trick is to find a doctor who knows more than a thing or two about scleroderma, or your condition in your area.  You may have to travel, but it is worth it.  This is a chronic illness and your life depends on how well your care is managed.  I know scleroderma, so I will refer the two organizations I trust to help patients without requiring a donation or membership.  These organizations count on donations from people other than patients. If you pick up the phone and call these foundations, they will give you information over the phone for free.  
1.  The Scleroderma Research Foundation Contact Info and Downloads for newly  & not so newly diagnosed patients
2.  The Scleroderma Foundation  Contact info and Downloads for newly & not so newly diagnosed patients.   

Patient Communities:
Very helpful.  I recommend the following:
1.  Treatment Diaries   
Outstanding community founded by cancer survivor, Amy Ohm.  They will not ask you for money to join, and it’s a great way to connect with fellow patients.
2.  Inspire:  Another great online patient community that will not ask you for money to join.  

So, those are my comments about those 5 steps based on 20 years with scleroderma.  Many autoimmune diseases have similar symptoms to fibromyalgia, lupus, rheumatoid arthritis and drugs used to suppress the immune system for cancer treatment, like methotrexate are often used in the early stages of scleroderma.

I would like to add that If you are newly diagnosed or seeking better care because what you are doing, don’t be afraid to look at how people with other diagnoses are coping.  We share the same experiences like loss, grief, anger depression and so much more.  My diagnosis of sarcoidosis was accidental.  I went to 4 different ER’s before UCLA took my trouble breathing seriously and and did the tests  that lead to a lung and lymph node biopsy that provided the sarcoidosis diagnosis.  Until I was given Remicade because of the sarcoidosis, my symptoms were progressing of both the scleroderma & sarcoidosis.  I had to fight for the recommended Remicade and bypass 3 other medications that needed to try and fail before using remicade because of cost.  Since 2007 and receiving Remicade with Methotrexate, the pulmonary fibrosis in my lungs has stopped progressing.  Fighting for care sucks, but it’s exactly what we have to do to get what we need when someone says “no” due to cost.  If you take anything away from this post, I urge you to keep fighting.  It’s hard.   I;m not going to lie, there were times I wished for death. I would tell myself, “I wish this was over.”  Until I realized my scleroderma was not going away and over, meant death.  I made it through the worst of it.  I think it is luck I am not dead because many die from scleroderma every day.  I’m here because it was not my time.  I continue to heal and become stronger because I am my own best advocate.  There are times I put my foot in my mouth and make mistakes.

If you skipped to the end:

Advocating for yourself is on the job training, even with help.  And there is no shortage of people looking for minions for financial gain or to fulfill some messianic fantasy.  So, watch your back, Jack.  Rest between battles, because you won’t win every single one.  Somedays, your only goal needs to be to live to fight another day.  Most important, the best possible outcome may not be what you want.  It may take compromises, like giving up certain foods and activities and worst of all (at least for me) asking for help.  If you have to give things up because you can no longer do them, take time to grieve, but try not to let it consume you and it times, it might but you can crawl out of the jaws of what’s consuming you.   There are no guarantees in life, but there is hope if you look for it.    Keep looking for hope.  We all have limited time here, cherish what you get.  I never said this would be easy.  I still struggle at times, I take antidepressants, I see a psychiatrist to manage my meds for anxiety and have a checklist of depression red flags for me.   Exercise and writing are my outlets.  My happy place is time with my son.  My dogs get me out of bed every morning.  Find you tools, then fight.

 

Why I Am Not Scleroderma

Dog barking with caption: "some days, we just need to get our bark on."

 

Yesterday on Facebook, I expressed my disappointment with  I.Am.Scleroderma campaign.   I do like and support the foundation who did it, because so many patients benefit from their work.  I am not happy with that campaign. You might ask, why not send a letter?  Well, I had a thought, expressed it on Facebook and wondered if other patients felt the same way.  Plus, I don’t post to make any friends,  I just post honestly.  I was told once I should think in a more marketing perspective by a former so-called mentor.  We no longer speak and it was a very smart decision, but that’s a whole other post.

I write to get conversation going about not only scleroderma & sarcoidosis, but also associated conditions like  pulmonary hypertension, Raynaud’s Phenomenon and mental health.  So, in the spirit of Scleroderma Awareness Month, and my slacking last year by not speaking out when the I.Am.Scleroderma campaign started, I want to explain to you why that statement offends me so.

This is not an attack on The Scleroderma Foundation.  This is my disagreement with their choice of wording for a campaign.  Since deciding to independently volunteer to raise awareness and have no attachment to any non-profit, I have the luxury of speaking from my heart, and not from a marketing perspective.  I have nothing to loose by sharing my feelings, because that’s all they are, my feelings.    They will not buy or sell anything.

Anyone who sees me is free to cuss me out for saying what I feel about the meme.  Please comment.  I will moderate, but as long as there are no racial slurs or snake oil, I will make sure it is visible.  See, it’s not the sharing that was encouraged by the campaign I dislike.  I read some great posts by patients and saw some great videos blogs as well.  The program is great, but the message is: I am scleroderma.  Putting a period between the words does not lessen the anger that statement creates.  I have sat n my feelings for a year.  One reason was I thought I just needed to calm down.  I haven’t.  So, here is why I am not scleroderma:

I had my first serious complication from scleroderma in 1996.  After two digital sympathectomies, I thought my hands would just return to normal and life would go on as planned.  It did not.  I continued to loose range of motion all over my body.  In the second semester of my sophomore year in nursing school, at then Viterbo College,  I was evaluated for physical fitness to continue on to do my clinical rotation.  As I reached down and found I could not touch my on toes, it became painfully clear that scleroderma was progressing faster than I ever imagined.  I think it was that moment that triggered profound depression and anger.

From that moment on, I didn’t say it, but I thought of myself as scleroderma.  I was diagnosed with depression for the first time and received counseling therapy through the VA in Sparta, Wisconsin.  It took weeks to get to the statement, but my therapist said to me, “Karen, you are not scleroderma.  You are not your diagnosis.”

Skip To the End
It was easy to say, “I am not scleroderma”, but it was not easy to feel.  My actions reflected my feelings for years.  I took a blow torch to many bridges and hurt people who tried to help me in ways I continue to regret.  I have forgiven myself, but I will always regret my actions.  I can’t change them and those actions in my past have opened my eyes to create a better future.

So when I say that I am not scleroderma, it comes from a place I worked hard to get to.   A campaign called, “I am scleroderma” makes me sick.  The name makes me sick.  I can in no way endorse it.  I want very much to share the blogs and videos from the campaign, but doing so shares the message, “I am scleroderma.”  I can no longer find the campaign on the website, but there is a a mess of scleroderma blogs with a Scleroderma Foundation logo with the words, “I.Am.Scleroderma.” on it.  I will read the post, but I won’t share it because I cannot share that statement.  Well I’d share it with a paid endorsement  and a disclaimer that it’s a paid endorsement.  (Hey, a girl’s gotta get her pedicure on when she can.)

Thank you for taking the time to read my  thoughts about a poorly named, but well intended campaign.  My wish when I started blogging in 2009 was to share the message with fellow patents of any illness that they are not their diagnosis.  I learned the very hard way, which has made me cynical at times.  I only hope this post helped to better explain my reasons for hating the name of it and not the foundation.  I will continue to walk and support patients.  I will continue to share their useful information.  I will also never hold back the way I really feel.  Also, I noticed I am unable to find that meme I.Am.Scleroderma on the foundation’s website.  Yay!!!

Cat with cherry tomatoes on paws and balanced on head.
Let;s take a deep breath and remember that we can’t agree on everything. Come on, you know it would be no fun of we did.