Why I’m Not Angry Cancer Gets More Attention Than Scleroderma

 

 

Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why.  I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.

Why is cancer so infuriating to patients with rare diseases?  Well, obviously, people have heard of cancer.  It occurs more in the general population.  I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.

I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words.  What I found and concluded, surprised me.

I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs.  Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression,  like methotrexate.

Cancer research has also brought us the infusion clinic.  Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care.  More people get cancer, and many have difficulty when IV’s are needed.  Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.

Okay, what were we taking about? 
Cancer research has helped lead the way in the care of chronically ill patients.  Yes,  scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients.  But wait, cancer isn’t the only condition that helped improve patient care.  How about the care of individuals who are paralyzed by stroke or injury?  There’s some rehab crossover.  How about Diabetes?  Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet.  It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.”  Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall.    General practitioners know that poor circulation causes infections and amputations of limbs.   If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma.    That will help that doctor recall scleroderma from the Rolodex# in their brain.

Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family  as Lupus & Rheumatoid Arthritis, except it affects connective tissue.  You know how there are different types of cancer, there are different types of autoimmune diseases.”

I know, it’s not all that short, but it’s as short as I can get.  Recognition of Lupus or RA helps.  If someone hasn’t heard of those, I add a blurb about diabetes.  I will say something like this:
“You’ve heard about diabetes, right?  Diabetes is also considered an autoimmune disease. “

Most people are surprised by that information.  They recognize diabetes, and now you’ve connected scleroderma to diabetes.  Just like throat cancer is different  

In other words, those who named cancer did well for marketing purposes.  No matter what kind of cancer one has, everyone knows about cancer.

So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research.  Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously.  When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.

Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?”  Yeah, I am and here’s why:  Research breakthroughs and progress in other illnesses, benefits research in other areas.   One example is Benalysta for Lupus.  Benlysta was approved by the FDA for the treatment of Lupus.  Oh wait, it was THE first medication FDA approved for treating Lupus.  As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma.  (See what I did there)

Another idea is a compare and contrast.  Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition?   Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.

Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster.  A rising tide lifts all boats.  Research progress helps the illness community over all.  We can go back and forth for days about how one is worse than the other, but all illnesses suck.   Awareness is useless if we don’t teach anything along with it.  And teaching does not include photographs for shock value, but that’s a whole other post.

Thanks for reading! -K

 

FOOT NOTES

**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.

** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”.  Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable.  High anxiety makes my pain worse as well.  I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety.  Many patients can attest to stress making symptoms worse.  I ask for these things with the risk of stigma in the back of my mind.

*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis.  Also, if he was on his way to a crisis, he would not have stopped to speak with me.  When I am in pain, or during a crisis situation, I have an unusually clear head.  It came from two decades of experience.  It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself.  I have driven hours for care while in excruciating pain.  And when I say I have driven hours, I mean I was driving the vehicle.  I have learned calming techniques to be able to speak on my behalf.  I will admit though, the longer the problem continues, the more the F bombs fly.

#If you don’t know what a Rolodex is, Google it you young whippersnapper.  And get off my lawn!

 

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.

Scleroderma Does Ugly Things to Beautiful People

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

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

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

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

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

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

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

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

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

 

I’d Rather Have Chlamydia.

 

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

 

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.

 

Vanity and Denial Are My Great Motivators

It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected.  I  am stubborn and  I refuse to accept my limitations because I have no patience for assistive  devices that move like molasses.  Yes, I do realize how childish that sounds after typing it, but I’m okay with it.  When I had to stay off of my foot for forty-five days, I used  scooter at Target.  I picked up everything in that stupid front basket and limped to the cash register, and I still moved faster than that scooter.

People tell me all the time how strong they think I am.  They go on about how I continue to live life bravely.  I’m not strong.  I’m not brave. I am deep in denial, and  I want to look good.  Does that make me a shallow person?  Look deep into my eyes.  Aren’t they gorgeous?    

Sure, it used to bother me that I can’t wear the four inch heals everyone else gets to wear, then I discovered shorts with Ugg Boots.  I know, it sounds weird.  And the shorts aren’t even that short. But it’s a great way to keep my body temperature under control, which is important if you have Raynaud’s.  And it doesn’t hurt that  Ugg Boots look good on me.  

The love I feel for my son and the thought of dying too young if scleroderma hardens my body sure is sad, but that’s not motivating enough to get me to exercise.  But do you know what is?  It is the remote possibility my son might have to see me ride a Rascal Scooter in Target, with an oxygen tank wearing velcro shoes.  Sure, I want to be around for my son, but I want to be around for my son and have an ass so perfect, one could bounce a quarter off of it.  Is that wrong?

 

 

Laughter May Be Best Medicine for Scleroderma

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.)

Clip from my performance at The World Famous Comedy Store, June 10, 2014

 

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.  

When It Comes to Scleroderma, I’m a Chicken

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

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

June 24, 2014

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

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

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

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

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

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

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

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

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

Thank you.

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.