Dancing the Sarcoidosis ‘Cha-Cha Slide’
“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.” — Robert Brault
This is exactly what sarcoidosis is like. It’s like we’re living in the song “Cha-Cha Slide.”
Having sarcoidosis is a never-ending dance of symptoms, doctors, diagnoses, treatments, and medication side effects. We may make progress in one area only to find another problem flaring somewhere else. Sometimes it’s hard to tell if a symptom has eased up or if it’s just being overshadowed by something worse.
‘One hop this time!’
I’ve had occasional dizzy spells for about 15 years, but they were never more than a minor annoyance until recently. Early last year, I blacked out and fell. I didn’t know what was happening. I simply looked up and felt dizzy, and the next thing I knew, I was on the floor.
It happened again a few months later, and that time, I broke my foot.
The doctor said it is syncope, which could be caused by orthostatic hypotension, a sudden drop in blood pressure when standing up. It may also be related to postural orthostatic tachycardia syndrome, a common condition with sarcoidosis.
She told me to start taking electrolytes to keep my blood pressure from dropping too low. I did as she said, but then I was diagnosed with hypertension.
‘Take it back now y’all!’
The dance continues with fluctuating symptoms and test results. I try to schedule appointments as soon as possible for what seem to be significant problems, but things can change so quickly that the appointments can seem almost unnecessary.
Most recently, my doctors were worried when my liver enzymes appeared significantly elevated, which could be caused by sarcoidosis or one of the medications I take to treat it. They referred me to a gastroenterologist, who referred me to a hepatologist. By the time I saw him, my numbers had dropped and were closer to the normal range.
Over the years, the same thing has happened with my white blood cells, a sign of infection, as well as with countless skin rashes and swollen joints. Now I take pictures to show the dermatologist and rheumatologist, because the issues may have cleared up by the time I see them.
‘Slide to the left, slide to the right!’
Too often, another party will try to cut in: the insurance company.
When I meet with my doctors, we discuss options and determine the best path forward to understand and treat my disease. Unfortunately, many of these tests and treatments require prior authorization, which can delay or deny a plan created by our clinicians.
In August 2020, I was awaiting delivery of my specialty medication, but it never came. When I called to find out why, I was told that it was an issue with prior authorization, and no further explanation was given. Suddenly, and without notice, the insurance company had decided not to cover the medication I’d been on for five years — a treatment I’d always referred to as my miracle drug.
There was an appeal process, but because I was between rheumatologists at the time, it was even more difficult to pursue. I had to ration my medication to make it last longer, but that made it less effective. When I found my current rheumatologist, she was able to move things along and eventually get the medication approved again. But it took nine months for it to finally come through.
Because I had been a spokeswoman for that particular pharmaceutical company, I reached out to my contacts there, who told me about their patient assistance program. Getting enrolled in this program enabled me to get my medication at no cost while my insurance appeal was pending.
Physical therapy may be the greatest example of this dance. My doctor ordered physical therapy to improve my strength and mobility and reduce chronic pain. But in just the past year, our progress — and our ability to even work on these goals at all — has been thrown off course by a broken foot (six months), a delay in getting treatments in order to get the COVID-19 vaccine (three months), dislocated ribs (one month), three severe flares that took me completely out of commission for a week at a time, and at least a dozen shorter flares that lasted a day or two.
Some of these episodes caused significant setbacks that decreased my ability to do the exercises. Others forced me to work on something apart from my original goal. Many kept me from getting to physical therapy at all for extended periods of time, which made me feel like I was starting from scratch again.
‘Turn it out!’
There’s never a dull moment in the life of a sarcoidosis warrior. We have flares, new symptoms, questions, and sometimes answers. We have backward steps and forward steps, and really all we can do is try to enjoy the dance.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.
Great article to explain, or try to explain, the roller coaster we are on!
🦋 Kerry Wong
Thanks, Patti. It's definitely a ride!
Thanks for sharing your experiences and approach!
🦋 Kerry Wong
And thank you for dancing with me!
And let's not exclude family/friends who do not understand the rigors, pain and suffering from the Sarcoidosis Cha-Cha and think of some of us as just putting on a performance. Makes me want to do the Cha-Cha upside their heads.
🦋 Kerry Wong
Aww, Debbra, I can surely understand that! But hopefully the more we share our stories, the more they will learn, too. Then we can dance together!
loved this article I have not had any issues for years with my Sarcoid now all hell is breaking loose with my body blood pressure fluctuating, sugars are goofy , CRAZY LFT TEST RESULTS starting to worry need a good hepatologist sarcoid specialist any suggestions. I am not even sure if it is the sarcoid flaring up but the more research I do I am thinking it is. any advice appreciated
🦋 Kerry Wong
Oh, Michelle, I'm sorry it's getting so rough now ... and it is difficult to know whether new symptoms are from the sarcoidosis or something else. I'm not sure where you're located, but the World Association for Sarcoidosis and Other Granulomatous Disorders (WASOG) offers a list of sarcoidosis clinics around the world. Hopefully there's something near you that can help. Wishing you lots of luck!
Thanks for sharing your experiences. I was recently diagnosed with sarcoidosis (4/2022) after almost 20 years of rollercoaster symptoms, inflammation, rashes, fevers with no known origin, that left me feeling like an insane alien. I'm being treated now with Prednisone and Hydroxychloroquine and I'm thankful for a team of doctors at Florida's Mayo Clinic working together (Rheumatologist, Hematologist, Pulmonologist, Gastroenterologist) to figure out a diagnosis. Sarcoidosis has pretty much attacked all of me but knowing I'm not alone makes it a little easier to deal with.
Thanks again for sharing.
🦋 Kerry Wong
Aww, Kelly ... I'm sorry it took so long, but glad you finally have a good team working together for you - that makes all the difference. And you are definitely not alone - we're all in this together, and there is such a supportive sarcoidosis community online through social media groups, pages, etc. Stay strong (and you are definitely not an insane alien, but I 100% can relate to that feeling!)
My Goodness! All the comments, plus the article - you are talking our lives for the last two years! Try pairing Sarcoidosis with the diagnosis of stage 1A Multiple Myeloma (IgG Kappa Light chain) with radiation, chemotherapy, the use of a chemotherapeutic drug Malphalan, an autologous stem cell transplant - talk about scrambling around with lab values that are so far off base that we were not sure what my Hubster was dealing with in the beginning. He’s had so, so many tests to rule out so many different things…until the working diagnosis of Sarcoidosis was the only thing left to explain all his health issues. Nausea, vomiting, exhaustion, dizziness, kidney issues, then sudden fluctuations in his labs that we thought were under control, only to have a newly introduced drug or a different blood chemistry throw everything into question. Thank you so much for eloquently describing your symptoms in plain and simple English.