The Growing Pains of Self Advocacy

In August, I moved from Murrieta to Long Beach to be closer to a Veteran’s Hospital.  I was being seen at Loma Linda Veteran’s Hospital, in San Bernardino for over 10 years.  I moved to Long Beach because I prefer the beach to the mountains.


Yesterday, I had a follow up appointment with my rheumatologist in Long Beach.  We did not agree on  resuming treatment for scleroderma and sarcoidosis.  I could go on into details, but I won’t, because it will be only my version of what happened.  It will be riddled with my emotions and one-sided.   Because I was so one-sided about one topic- resuming my treatment, I forgot to mention other issues that needed to be addressed.  The rheumatologist will not see me for three more weeks.  When her office called today, I asked to see her next week because our appointment was unfinished.  He  made it clear I would not be seen for three weeks, but did say I could stop in next week and talk to one of the Fellows.  So, that was very reasonable.  None of my problems are life threatening and can definintly wait one more week.


Yesterday, I lost my cool.  I did not yell or cause a scene, I just could not focus based on this disagreement. My appointment ended before I could address all of the topics that needed to be addressed.  I did this in the 1990’s more than a few times and symptoms would get overlooked simply because I was too upset to stay focused.


My point?  

Being my own best advocate has helped me throughout the years, but because I am advocating for myself, when I get upset, I need to take my emotions, set them aside from whatever has made me upset, and move on to the next topic, otherwise it will get overlooked.


This is not the first time this happened, but it has not happened in about 9 years.  It’s growing pains into a new health care system.  This is a working environment.  Although my day to day business at the Veteran’s Hospital is for my personal well being, it is still a working environment.  Things will get personal, but I cannot take them personally, because it fogs up my view in the moment.  Taking care of our health is a full time job for everyone  For those with chronic illnesses, we live where we work.  We don’t go home at the end of the day, our job is 24/7.  When dealing with doctors or any health are setting, – for me, it helps when I think of providers as my peers on the same team.  Of course I do not have the same education and experience a doctor would have, but we work together on the same team. And my providers belong to countless teams lead by every patient or caregiver of a patient’s team.


We are all unique.  

Patients with all diseases are unique because every human being is unique.  How our disease affects us is unique.  And how we advocate for ourselves and cope with the treatment, or lack there of, is unique.  I cannot speak for anyone else, but me: a patient diagnosed with scleroderma 20 years ago and sarcoidosis 8 years ago.  I can say after all this time it can be very difficult not to show my feelings of Hulk Smash! going on inside, but  it has gotten easier not to.   Luckily with age and experience comes wisdom and patience.  The wisdom helps, still getting better with the patience and somedays, I have neither.  Yesterday, was difficult, but I see two more doctors today to help address some of the topics missed yesterday.


Every doctor is unique, especially when it comes to scleroderma. (Not just “Scleroderma” more like “Insert Disease here”.)  

The doctors I worked with in San Bernadino were very open to working with a doctor at another location because they referred me to that doctor.  Here, I came in and (I’m paraphrasing) told this rheumatologist my treatment is managed by another rheumatologist and I come to the VA because that is where my care is available at no cost to me.  Because of the treatment relationship with a doctor who has vast experience with scleroderma, I have been able to challenge formularies of the Loma Linda VA because the Rheumatologist there referred me to him.  This is different.  I am stepping into another rheumatologist’s “house”.  I’m asking this physician to just “do what the other doctor recommends”.


We had no prior relationship relationship other the me coming in, refusing her recommendations and continuing my treatment that she has to approve in order for them to go forward.  Doctors have feelings.  Should I care?  Yes, because in my mother’s generation, they took a doctor’s word as Gospel.  Some people still do.  I question everything.  Not out of disrespect, but because I want to know.  It’s not like a discussion in a college history class, I’m emotionally attached to the outcome.  At times, emotions get in the way.


Yesterday, I was reminded that I may know a thing to two, but I don’t know it all.  I’m not saying the doctor I saw yesterday is right and  I take comfort she is not my only option.   Self advocacy is all about finding options.  If I continue to hit roadblocks, instead of becoming upset, I can look at my options and work to be seen elsewhere.  I can move forward, be patient and work in my own best interest.  The hard part is when I feel all “Hulk Smash!” inside, no matter how much experience I have, there will be some times I have trouble not acting as such.

Update, 5/13/2014.

The chief of rheumatology at the Long Beach VA, has turned to be an unfavorable match for me.  So I am moving my care to the West LA Veteran’s hospital, where the chief of rheumatology is willing to work with my doctor at UCLA.  The Rheumatology Chief tried to give me incorrect information about effective medications for my condition.  She actually recommended something that has been shown to be less effective than my medication that I had been taking for nearly 7 years, for reasons I cannot even imagine.  The bottom line is, if I cannot trust my doctor to give me correct information based on what works, instead of a formulary when non-critical, I cannot trust her during a critical event.  So, I’m taking my “ball” and going to “play” somewhere else.




On To The Mission At Hand…


In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.

The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.

If You Skipped to the End

I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!


Hand in splint designed by patient's occupational therapist for patient with scleroderma

Notice how the splint is cut around boney prominences to avoid pressure sores.



hand in a splint made by an occupational therapist to gain or maintain range of motion.

Yes, that is nail polish. I’ve been moving, there’s no time for a manicure. Don;t judge me!

















In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.

Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.



Link Sources:

Scleroderma Research Foundation


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