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.

Go Up The Chain of Command; or In Plain English: Talk to That Person’s Supervisor.

This is also a response to a tweet I disagreed with during a chat with Treatment Diaries almost a year ago.  A fellow patient tweeted, “The Rheumatologist is the captain of your medical team.”  I disagreed.  I could not properly state why at the time.  Now, here is my response: Only if the rheumatologist is qualified, should they be captain of anyone’s medical team.  Not every rheumatologist is qualified.  If a rheumatologist is new to whatever condition you have, and makes the effort to become familiar, they are most definitely worthy of the title: Captain of my medical team.  But really, all treatment is ultimately the patient’s decision, and for me, my rheumatologist is the member of my team.  The most important member of my team, second to me.  


Not every doctor is alike.

I have had the honor to meet and work with doctors who will get up at 4am to see a full day of patients, travel to teach, conduct research and still manage to be the nicest people on earth.  When  a doctor tells me that my requests are “hard for them”, or “we don’t do things that way, because it’s always been this way.” makes me recoil;  at first in anger, then disappointment, disgust and then, I respond by seeking another doctor.


Veteran’s do have a choice with their care.  It’s just a matter of finding the person who knows how to get it done.  

After my discharge from the hospital, I realized I had missed some big red flags that should have motivated me to get the right Veteran’s Hospital rheumatologist for me.


Not only am I acutely aware of the threat of major complications because of the damage done to my body after years of scleroderma,  the event opened my eyes what was once to me, unthinkable possibilities: I had no emergency plan in place if I were to be unexpectedly hospitalized.  One of those things in place requires a medical team I can trust.  One of my team members turned out not to be a team player.  So, I decided to ask for what I needed before another unexpected emergency happened.


When I decided I  needed to be seen by a different rheumatology department, I was told, “It couldn’t be done”,  that felt to me like a reflexive response by my provider and patient social worker, but I knew I could get to yes.


During my stay as an inpatient at The Veteran’s Hospital, I was told  more than once a day that my providers were here to serve me.  Nurses, doctors, administrators, crazy visitors- everyone was here to serve me, a veteran.  And I saw them tell this to every other veteran as well.  If I was unhappy, I had the right to question and request other care.  In fact, while I was an inpatient, I asked for the Nurse Practitioner managing my case to be replaced, because she was not a good match for me.  It was done with some resistance, but because I was persistent and did not take “no” for an answer, it happened.  Not because I yelled or screamed, but because if I was told no, I went to the next person in charge.  It’s actually rather simple and taught to every person in boot camp, “Have a problem?  Use your chain of command.”  And that’s exactly what I did.


If I told my nurse something and it was not done, I told the nurse supervisor.  If The nurse supervisor told me no, I talked to their supervisor.  If that didn’t work I talked to my social worker and finally, I learned if I wanted to get things done, I just needed to call my friendly neighborhood patient advocate.


You know that friend you have that  “knows a guy”.  The patient advocates at the Veteran’s Hospital are the guys that people say they know, to get things done.


I requested  to be seen by a different rheumatology department in another VA Hospital and keep other frequent routine services done at my local VA without having to switch everything.  Tuesday, I received a phone call the new Rheumatology Department has been sent a consult.  I will be seen there within the next few weeks.


How did I do it?  It’s no secret, it’s just persistence.   Asking is not enough; follow up and persistence must be done.



The break up call. 

Before I received word about the paperwork completion, I was called by a rheumatology fellow, who tolde me he had called on behalf of the chief of rheumatology at Long Beach VA,  to convince me to stay with their rheumatology department.  That the the chief  had my best interest at heart, but the medications I need to have with the correct dosage are “hard to get in the VA system”. The prior statement in quotes only confirmed my decision to request a different VA for rheumatology.


Telling me that using an alternate drug because the one I’m currently taking would be hard to get approved was only one mistake. 

I was already taking medication from another VA that was non-formulary.  You know what the prescribing doctor had to do for that?  Fill out extra paper work to make a case for the best medication that works for me.  By my doctor making that extra effort, I was saved time, possible damage and complications by trying a less effective drug, then having it fail.  If I work with a doctor, there is no reason that doctor should not go to bat for me.  I don’t always need non-formulary drugs, but when I do, my doctor gets it for me because they have my best interest at heart.  A doctor who sees me for less than 20 minutes, then recommends I use a less effective drug to replace something that has been effective for 7 years is not a doctor with “my best interests at heart.”  That tells me that doctor does not want to do the initial paperwork.  That also tells me that if my life were in jeopardy and I needed non-formulary medication, that doctor would first prescribe the formulary.  One other thing:  This doctor tried to replace the treatment I had been on for 7 years by telling me, “Your (other) doctor said it would be okay to switch you to the formulary.”


When I first heard that nugget, it was by telephone from one of the fellows of the attending physician of that department, and it did not sound right to me.  It sounded like a cherry picked statement from the entire e-mail this doctor claims to have received from my other rheumatologist at UCLA.  It was just too vague a statement.  I followed my gut and I flat out refused the change in our telephone conversation, and I could have sworn I heard a gasp on the other end.


Refusing the change was not about my lack of cooperation.  Changing to a new treatment is a big deal. Especially if the treatment I’m on is currently working.  It is rare to have a medication work well enough to stabilize my condition, and to put it even more plainly: If it ain’t broke, don’t fix it.


I also had to consider; what if I had adverse side effects from this “new to me” drug?  Do we go back to the treatment that works?  What kind of damage could that cause?  Changing treatment seemed like an unnecessary step.  And instead of one infusion every eight weeks, it was to be a series of injections- into my arm and not my port.


My doctors aren’t the only ones making an effort here.  

I work very hard to stay healthy.  Not just by taking my medications.  I have made my life revolve around keeping myself healthy and alive.  It comes before everything.  I have sacrificed living with my son, so that if I need immediate medical care, there is no change in his schedule.   In the past, I have delayed care of something that needed attention because I wanted to be with my son.  Of course I know that my son needs me in that immediate moment, but I also know that if I’m dead or disabled further, in the long run that is not best for my son.  My son has a step sister, a step mom who loves him as her own and a dad who puts his son first.  It sucks to not see him every day, but this is part of what needs to be done to keep me here for my son.  Not only do I sacrifice time with my son, I eat to benefit my health and rarely stray from my healthy food habits, I exercise not only to look and feel good, but because my lungs need the workout to make it easier on my heart.  In short, I do the work, I walk the talk.  I don’t expect my doctor’s to be at my disposal, but when it comes to a choice of medication, I want a doctor who will choose what’s best for me, not what is easier.  I do not ask for the best medication for my condition, then go out and drink, smoke and eat poorly.  I contribute to my care by taking care of my body and putting my health before everything. Everything.  If I am assigned a doctor and I request to maintain continuity of my care and that doctor tells me “it’s hard” to request something before even trying, I will not work with that doctor long.  If that doctor is a fellow, it’s easy to request to be seen by another.  But when it’s a chief of a department or attending physician, that person is leading that department by example.  That is when it is time to take drastic measures.  Even if it means adding drive time to my appointments, and waiting a couple extra weeks to be seen when not in crisis.


This has happened before.

I was not satisfied that the shortness of breath I was experiencing was not normal, or just the disease process of scleroderma.  I felt like I needed a real answer, so I followed my gut.   I took my CT films and reports from my local Veteran’s Hospital and a local private hospital and went to an emergency room 3 hours away for a second opinion.  (I used the ER because I was short of breath and the doctor could not see me that day.)


My local VA hospital and private hospital ignored the following statement in my radiology reports:  “Follow up immediately, possibly lymphoma.”  Yep.  The possibility of lymphoma was just interpreted  as “normal disease process” and wrote of my swollen lymph nodes in my chest as simple inflammation.  That visit to another ER with more resources got me a pet scan, then a biopsy to determine what was going on.  It wasn’t that the doctors I saw locally  didn’t want to help, they just did not know how.  It was out of their scope of knowledge.  That act of taking my films and reports to an ER with more resources was what got me the right treatment that has been working for 7 years.  Yes, I paid out of pocket and used private insurance provided by the company my ex-husband and I owned at the time.  But it was worth it.  Thanks to taking action, I eventually had a stable condition.  It took a lot of work on my part.  Of course I wish it didn’t take this much work on my end, but I also have two rare illnesses and I have yet to meet another person with both scleroderma and sarcoidosis.  So if work is what it takes keep me healthy and mobile, I’ll gladly do it.