A Scleroderma Patient with no Doctor: A Modern-Day Crisis

 As some of you may already know, I have an autoimmune disease called Scleroderma.  Scleroderma can be fatal, so it is imperative that I continue to be monitored by a rheumatologist, plus other specialists.  Scleroderma can affect several different organs, so the list of specialists can add up after a while.  I will require this monitoring for the duration of my life, however short or long that may be.  So, imagine my surprise when I received a phone call in December informing me that my rheumatologist's office, Arthritis Northwest, is no longer accepting my insurance, Molina Medicaid.  I was given the phone call with less than a month's notice that I needed to find a new provider.  Now, in my town, there are only two rheumatologists... the one I was seeing and one through Providence, and they will not see me because I am a MultiCare patient, not a Providence patient.  Cue my anxiety!

Living with Scleroderma is scary enough without losing the only doctor in town that will see me.  My anxiety and stress have been through the roof ever since I got that initial phone call regarding this whole situation.  Arthritis Northwest gave me no advice, no phone numbers to call, no idea of what to do next.  They simply told me that they are canceling my appointments and any prescriptions currently being prescribed by their doctors.  That was it.  That was the end of my 5-year relationship with my rheumatologist.  Now, I am left to figure out what is next for me and my options are scarce, at best.

I went to my primary care physician, Cassandra, as fast as possible.  We got right onto the task of finding me a new rheumatologist.  I found one in Idaho, and she sent in the referral request.  It was quickly approved, but I'm still waiting to hear from them to schedule my first appointment.  It is on my to-do list to call them for an update and to possibly schedule my first appointment.  I have kind of been dragging my feet because I have no way to get to this appointment.  I take the bus everywhere I go, but there is no bus that goes to Idaho from here, so I need a ride.  Unfortunately, I don't have any friends with cars anymore.  My recent depression has alienated me from anyone who might have been willing and able to help me.  I'm at a fork in the road on this one and I must decide what to do to get this appointment scheduled, including the transportation to and from this appointment.  

I am truly blessed to have Cassandra on my medical team.  She is my main doctor and the one I always give priority to when making medical decisions.  She has always listened to me and my concerns.  She has never dismissed my issues or gaslit me into believing that any of it was all in my head.  At one point, several doctors had refused to take me as a patient because I am a complicated patient (their words, not mine).  I came into the office once to tell Cassandra about it, and she got on the floor kicked her legs and feet and flailed her arms around while screaming at the top of her lungs!  It was so loud that her nurse came in to make sure that nobody was being injured or harassed.  That was the moment that I realized that my doctor genuinely cares about me and the care that I receive, not just at her office, but everywhere that I seek care.  Her compassion, understanding and empathy are a blessing in this modern-day where doctors have lost their drive and compassion.  I remain eternally grateful that I have Cassandra on my medical team.  If it weren't for Cassandra Dubbles, I might have been dead by now, and that is not an exaggeration.  

One of the biggest stressors regarding not having a rheumatologist is the lack of access to the medications for Scleroderma.  I am on some heavy-duty immune-suppression drugs.  These are drugs that most doctors do not prescribe or even know very much about.  When I was told that my prescriptions were going to be canceled, Cassandra agreed to prescribe them for a short period of time.  I am on Arava, also known as Leflunomide.  This is the first Scleroderma drug that has ever worked and mitigated any of my pain, so I am terrified to lose access to it.  Losing my rheumatologist is the worst thing that has happened since beginning this journey back in 2018.  I have not been without a doctor and specialist since 2020.  I don't want to go back to higher pain and more uncertainty in my life.  I want to live for a very long time, but if I lose access to the only drug that has slowed the progression of my Scleroderma, I might not be here as long as I'd like to and that makes me incredibly sad.  My life literally depends on them monitoring and treating this disease.  Why is nobody taking this seriously?  What am I supposed to do without a rheumatologist or access to this drug?  These questions swirl around my head on a loop these days.  

When I am stressed out, all of my painful conditions tend to flare or give me worse symptoms for an extended period of time.  The worst pain that is caused by stress is the bladder pain from Interstitial Cystitis.  On days that I get stressed or worried, my bladder instantly starts to burn, cramp and ache.  Urinary pain and urgency quickly follow and before you know it, I am back in bed for several days.  Nothing really helps the pain.  I have pain medication and Pyridium to numb the bladder, but nothing truly takes the pain away.  The medications only take the edge off the pain and make it where I no longer want to kill myself to get away from the excessive pain I have been cursed with.  My autoimmune life is complicated and painful to deal with day in and day out.  Some days, I just want to give up and die, but other days I wake up full of passion and motivation to carry on.  It makes no sense, not even to me.  I just go with the flow and hope and pray that better days are coming.  The bladder pain is one of the main reasons I have made it my goal to learn how to meditate.  I know several Interstitial Cystitis patients who have had a lot of success with using meditation to calm the nervous system, which in turn, calms the bladder.  I've been meditating just over a month now and I am already noticing a difference in my pain levels and pain management.  I wish I had not ignored that advice for so long.  Any time someone recommended meditation for my chronic pain, I felt dismissed.  Then, one day my therapist and I were discussing it, but she was not pushing it on me at all.  She was just telling me about an app that worked for her, so I downloaded it and checked it out.  It has been life-altering just in the first month that I have been using it.  Now, I am working on building a practice out of it and for the first time in a long time, I actually have hope!  Imagine that!