This could be Heaven or this could be Hell…
Since the beginning of 2016, the entertainment industry has been hit hard with the deaths of some of its most influential stars. It began with the death of David Bowie, music legend extraordinaire. While I wouldn’t call myself a die-hard Bowie fan, I always appreciated the influence he had over music for many decades.
Soon after, Harry Potter and Die Hard fans alike were mourning the loss of beloved actor Alan Rickman. His death hit home, not because of his portrayal of Snape or Hans Gruber, but his role as Dr. Alfred Blalock in the HBO movie, Something The Lord Made. Alfred Blalock was a pioneer in pediatric cardiothoracic surgery, and a surgery developed by Helen Taussig, Vivien Thomas, and himself, the blalock-taussig(-thomas) shunt is the first heart surgery I had when I was 6 months old. That surgery bought me time when I otherwise wouldn’t have had a chance, and is still performed on babies born with various congenital heart defects today.
Then we received news that Glenn Frey, a founding member of the rock band The Eagles, passed away. Again, not a die-hard fan, but I did love a lot of their music and always sang along to Hotel California at the top of my lungs.
It was reported Glenn passed away due to complications from rheumatoid arthritis (RA), although in the first few articles I read there were conflicting reports whether it was due to RA itself, or complications from the medications. Frey’s manager, Irving Azoff, reported* that Glenn had been taking biologic medications to slow the progression of the disease for years, and he developed pneumonia and acute ulcerative colitis which ultimately led to his death.
*note: the original article posted on The Wrap was full of errors and incorrect information regarding RA, ulcerative colitis, and autoimmune diseases in general. I’m not a physician, but I have enough knowledge to understand that it was a poorly written, ill-researched article. It was extremely difficult to read, and stated that he passed from “ulcer and colitis.” Um… Ulcerative Colitis? Fortunately, the original article was taken down, and one with slightly more credible information is now in its place.*
This caused a stir in the autoimmune community, and not just from those suffering with RA. A number of autoimmune diseases are treated with many of the same medications, corticosteroids, chemotherapeutic agents, and biologic agents, all of which fundamentally do the same thing, suppress the immune system.
And therein lies the problem. The very medications which enable us to simply get out of bed, much less function in the world, come with a multitude of harmful effects that wreck havoc on our bodies. If it’s not the steroids destroying our bones, then it’s the chemo and biologic agents suppressing our immune systems to the point where we can no longer fight off anything.
Unfortunately, with so many parents choosing not to vaccinate their children (that’s a fat, prednisone puffed middle finger to you, Jenny McCarthy), we can no longer rely on herd immunity. That said, for most of us, it’s not even the fear of developing measles or whooping cough; we’re so compromised that, like in Frey’s case, a common cold or flu can’t be fought off and can lead to pneumonia. It’s a catch-22. We want to be out in the world and live our lives, but a trip to Panera Bread could potentially be deadly (I write this as I sit, where else, Panera Bread. Nothing can keep me away from the black bean soup).
Currently, I take steroids, 2 chemotherapeutic agents, and a biologic agent to keep lupus and my other autoimmune diseases at bay. These medications aren’t a cure and they will never be. Eventually, one or all of them may stop working, and it could be a fun game of “Which One Is It?” to determine which one(s) are no longer effective. They don’t ensure I feel great, and there are many days I can’t get out of bed due to pain, fatigue or a combination of the two. My morning pills cause such a severe case of nausea that I don’t want to talk for 30 minutes after I take them. The diarrhea comes with literally no warning, usually when I’m out in public, so I’m forced to haul ass to the ladies through the aisles of Wegmans with tears running down my face and shit running down my leg (no shame, people. no shame), because I couldn’t get to the toilet in time. Aside from destroying my immune system, my medications cause osteoporosis, diabetes, glaucoma, atherosclerosis, and increase my chances for developing certain cancers, most specifically Lymphoma.
Have I mentioned the medications suck? And currently, doctors have nothing better to offer patients who suffer from autoimmune diseases.
This isn’t a post simply meant to complain about the medications I take, not the case at all. The place where I’d be without these drugs is far worse. I’m thankful for all the research that has been done, and for the clinical trials that led to the development of the biologic and chemotherapeutic agents that millions of those of us with AI diseases take.
Though tragic, Frey’s death has shed some light and garnered “publicity” on the choices all of us in the autoimmune community are forced to make every day. If nothing else, Frey’s death is a grave reminder to what we face besides the autoimmune diseases themselves. Our choices for treatment are slim, and unfortunately come with a list of serious risks that some may think outweigh the benefits. Glenn Frey may have had a bigger voice than me (literally and figuratively), but his passing is a reminder that anyone with autoimmune diseases, famous or not, can fall victim to the very medications that keep us alive. For now biologics may be the temporary answer, but we must continually be raising awareness and fighting for research for improved treatments.
So Mr. Frey, I hope you and Bowie are rocking out making amazing music in Heaven. Rest In Peace.