The Scleroderma Saga Continues: An Autoimmune Update Post

 Scleroderma.  A hard word to pronounce.  A hard disease to live with.  The word, "Scleroderma" literally means hard skin.  It is a disease which causes excess collagen production, which then leads to hard skin in various areas of the body.  Scleroderma does not just affect the skin.  It can also affect several organs and cause fatal complications if not closely monitored.  Knowing this makes it downright terrifying to be without a rheumatologist, or a doctor of autoimmune and rheumatological diseases.  My previous rheumatologist dumped me back in December.  I had seen them for a check-in during the month of November, and they never said a word about losing the contract with my insurance company.  They didn't even bother to mention that there were contract renegotiations going on, so imagine my surprise when I got the call in December 2024 that they were no longer going to be caring for me.  I was blindsided.  To further the damage, they decided to cancel all of my appointments and medications, so now, I have nobody and no medication to help me with this awful disease.  Can you say "screwed"?  

As soon as I found out what was going on with Arthritis Northwest, I scheduled an appointment with my primary care physician, Cassandra.  She put in the referral to the new provider back in December and I still had not received a phone call from the new doctor.  I finally got a hold of them today and was able to schedule an appointment.  Unfortunately, my first appointment is not until the end of June.  The problem with this doctor is the fact that they are out of state, and I do not have a vehicle.  I don't think that the buses go outside of Washington state, but I'm going to research like crazy until I get this figured out.  I don't have friends anymore because of the mass abandonment that occurred during my depression, so I am totally on my own for this one.  I am going to ask around in my groups to see if anyone has any information on traveling to Idaho for medical care.  Maybe someone will know something...

Because Arthritis Northwest cancelled my prescriptions, I have been out of my immunosuppressant drug for a few days.  I had a stock of them that lasted this long, but now I have run out.  I am currently taking Arava, also known as Leflunomide.  It has worked so well that it has helped my pain levels, so imagine my disappointment when I learned that I was not going to have access to it.  I reached out to Cassandra and asked her for a few months' supply of the drug, and she sent it straight over to the pharmacy for me.  I am so blessed to have a doctor that listens to me, actually cares and acts quickly when something needs to be done.  You don't find doctors like her every day, so I will hold on to her for as long as possible.  Having a good doctor who listens to you is critically important when managing chronic health conditions like Scleroderma and PBC.  

I am grateful that I finally have an appointment with a rheumatologist, but now I am trying to cope with a lot of anxiety about the appointment.  I suffer from severe medical anxiety, so appointments with new providers are terrifying to me.  I prefer to see only female providers due to being sexually abused by two different male doctors in my teen years.  I do not know if they are assigning me to a man or a woman yet, so my nerves are a wreck just thinking about it.  I hate that I must cope with this much anxiety all because of what a couple of inappropriate and perverse men decided to do to me, without my consent.  I am forever affected by what they did to me.  I cannot go to a single medical appointment without suffering from anxiety or panic attacks.  I even hyperventilate when it gets really bad.  How am I supposed to make it through this?  I'll have to use the tools, skills and techniques that Lori has been teaching me in therapy.  I just hope that they work.  My life, mental health and wellbeing are all on the line if this doesn't work out properly.  

The devastated feeling that I have lived with for the last few months while I am without medical care has been difficult to cope with.  It's worse than losing a friend.  Losing necessary medical care is a form of devastation.  Without my medication, my progressive disease is doing just that - progressing.  The medications that I take work to slow down the progression of my disease, so without that, I am progressing a bit faster than I am used to.  The very thought of this disease moving any faster takes my breath away.  I feel like I can't breathe when I think about the end of my life coming sooner than it should.  With all of the medical and technological advances that have been made, nobody should be without their medications and other medical needs, such as mobility equipment, nebulizers and oxygen tanks.  We should not have to fight the system that was set up for us to fail.  My life should not hold less value just because I cannot afford these expenses, or because I have to wade through waiting lists before I can be seen.  The system should be set up to help everyone thrive, rather than fail.  I'm so tired of struggling through this system.  It's time for some major changes in healthcare in the United States.

Whenever I start to get stuck in a negative thought process like this one, I try to see the bright side of the situation.  In this case, I would say that I am grateful that I finally got my appointment scheduled and I am grateful that I have Medicaid that will cover these expenses - for now.  If I look for the good instead of the bad, more good things will come my way.  I've been learning about how a gratitude practice can positively affect mental health and I am here for it.  I have written at least one gratitude statement a day for years.  Recently, I increased that to three gratitude statements per day.  I just reached 1,000 gratitude statements in the app that I use to track everything about my health.  It is helping so far, and I am grateful for that, too!

Stay blessed, y'all!