Luck Fupus

A lupus blog…

This could be Heaven or this could be Hell…

 

autoimmunelifeSince 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.

Clueless gif

 

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.

Comments

  1. Tia G. says:

    Seriously….your Jenny McCarthy comment was hilarious. I mean..it’s crazy that celebs can just blurt out whatever and everyone acts like lemmings. Non-medical professionals should not give opinions….period. Awareness is necessary in all of this, and I hope we continue to make strides faster and more necessary than in the past 20 or so years. Always thinking about you, lady. Have a good weekend!

  2. Jennie says:

    First I’m so proud To see Someone’ I know on the Wego health site! I’m like a fan girl over here in excitement.

    Your article in response to long and short term medications Couldn’t have been more
    Perfectly timed. My protocol, plaquenil, prednisone, MTX and Benlysta ended me up with the flu (yes my whole family was immunized as soon as our Pcps and Pedes had Them ready to go)bc obviously you can’t be protected from all strains. And like you
    Said even a simple Shopping trip to my favorite Magical land I call Target, can end up I Picking up any Number of lovely sickensses. Which can and has been a threat to me, especially with a germy 3 yr old and a 5’year old in pre/k . But that’s life. I whip out my bottle Of Purell and take advantage of those shopping cart Lysol type Wipes and continue on. Bc I’m tired of being a recluse in my
    Bed hiding from the rest of the world.

    But back to my point , I was already having respiratory and possible cardiac side effects form my Infusions but they Had been monitoring me Closely. each month we play the “do the sideEffects /risks out weigh The Benefits game. Another favorite of mine. undlrtunately I ended up with the flu, feeling like my fevered body is ripping apart despite some serious doses of pain Meds. With in a Week my ass was landed in theHospital for three days with pneumonia and crazy chest pai and ive been having bilateral flanking back pain in my kidneys pouring WBC and off and on protein for over a month. (My
    Kidneys is another topic bc that wasn’t addressed accordingly in the
    Hospital) Even small breathes seemed like glass in my chest, I was getting double vision and almost blacking out and my sinus tackycardia was off the charts again. After admitted i had two teams of doctors. I love That my hospital is a teaching one, but having to repeat my medical history 12 times while barely able to breathe and have each of those drs examine me requirinf “deep breathes” left me in tears. I was so grateful the second day when my Rheumatology team made it a point to rush in and see me first. It was the breathe of fresh air I wish I could take lol but knowing they know my history like the back of their hand helpEd at least my anxiety some(that and some Xanax). The fluid in my
    Chest was making it sound potentially like fluid was now starting to surround my heart and thy were concerned the pneumonia was more than just bacterial clusters but lupus infiltration. Thankfully my heart
    Monitor showed no new cardiac issues aside from my usual sinus tackycardia. So I’m officially being taken off my biologic which unfortunately which was helping to a certain degree. And and temporarily off my methotrexate to give my lungs a
    Chance to heal. But there’s always a catch 22
    Bc now I feel like I’m ripping apart, fevers are back, butterfly rash is worse and mouth sore a plenty. It’s sad when you look forward to taking your next dose of chemo. Thankfully I see my rheumatologist monday and we are planning our next biologic which I’m pretty sure we’ve already narrowed down and I’m praying i can restart the metho ASAP.

    The point of all my rantings is, although I’ve
    Been on this autoimmune journey half as long as you have , every word struck a cord with me. The scary truths of the long term effects of these necessary drugs scares me. It feels
    Like with every pill, every injection or infusion I’m taking precious time away from the
    Back end of my life . Every time
    I look at my kids I pray I’ll be able to functional or even present for all of the big moments in thier lives. Thank you so much for sharing, it makes me feel less alone in my
    Worries and concerns. Here’s hoping better therapies and ways to determine what cell targeted therapies will work best
    Will become the future of autoimmune disease management. Instead of playing “what’s the biologic of the month”. I’m an impatient girl and the hurry up and wait game
    To find the right cocktail isn’t my favorite. in the mean time I keep focusing on my kids and I’m grateful for the support system I have!

  3. Todd says:

    Thank you for bringing this to my attention. Being on biologics and cortisones for twenty plus years has me concerned. Your always an inspiration to me, and I will never forget your speech at the e-connections conference. I’m praying for you.

  4. Jenna says:

    Completely agree with this post; feels like we are constantly playing Russian roulette with our lives when we take these medications! So scary!
    Jen-www.abalancedbelly.co.uk

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