The Pain you don’t see
Every day on social media you see the best of us. You see our vacations, our triumphs, our workout sessions, our happy family moments. But what about the stuff we lock away? The moments that only our closest friends and family even know about? It’s time to pull back the curtain for a peek.
I am honored and blessed to be able to compete as a Paralympic hopeful for the United States Paratriathlon National Team. Every day I work my ass off, spending hour upon hour training, eating, recovering and responding to hundreds of emails and filling out reports and applying for grants and sponsorships. But what do I not share with you? What it’s like to have a rare disease that affects my whole body on a daily basis?
My day starts off pretty rough honestly. I typically wake up in a fair amount of pain. I have old rib fractures that make each morning’s rise from bed a little nerve-wracking and risky. One false move and my rib will displace and it’s off to the chiropractor. My glaucoma is at it’s worst in the morning. Laying horizontal for hours causes my interocular pressure to rise. I have to immediately get up and take prescription eye drops to ease the pain and pressure to get my vision back each morning. After that I take out my worn out night guard, as I grind my teeth so badly that I wake up with a mild headache each day.
I take my thyroid med first thing, as it has to be on an empty stomach. I have what is called Hashimoto’s Thyroiditis, an inflammation of the thyroid that affects your whole body. I no longer make the right amount of thyroid hormone in my body, and therefore it needs to be regulated with drugs. Then the bathroom calls start. It’s barely time enough to hit my Nespresso machine and feed my guide dog before I’m running to the bathroom for the beginning of a 2 hour tour. This may seem like TMI to you, but it’s my daily reality. I was diagnosed with IBSD and now have confirmed ileitis and possible Crohn’s disease. I have taken every imaginable over the counter and prescription med known to man over the past seven years. I’ve had 8 colonoscopies, dozens of biopsies, scopes and lab tests. I’ve gone completely gluten and dairy free. I’ve reduced my stress. Only one medication gave me any relief, and it has been a godsend. But not a cure. When my eye disease, Uveitis is active, so is my GI disorder. The two go hand and hand, and honestly it’s my greater disability than blindness.
Really? You might be saying to yourself incredulously. “She’s really saying diarrhea is more difficult than being blind?” Well yeah, honestly I am. My blindness I’ve adapted to. I have a dog, a phone and computer that talk to me, I use a sighted female guide when I race on a tandem bike. I have options with blindness. With my bowel disease, I literally have tried every natural remedy, to meditation, acupuncture, and modern medicine, all with limited relief. And I can do everything ‘right’ in my diet, and there seems to be no rhyme or reason behind the symptoms. They just ‘are’.
So when I finally get my to my morning coffee, I then have to check on my rides to the specialists I need to see that day. It could be my Uveitis or Glaucoma specialist, preparing for surgery number 24 in 4 weeks. It could be the pulmonologist or Gastric doc, the rheumatologist or more. Then I eat my breakfast and down the barrage of pills I take each day, mostly anti inflammatory/ immune modulating supplements such as Boswellia extract and Black Cumin oil. Then I chase that with my inhaler.
My lungs decided after I contracted pneumonia last November that they wanted to stay inflamed along with my eyes and my GI tract. After a recent Cat Scan, it was found that I have something called Groundglass opacity for which I just completed a sleep study to determine the cause. It could be something as simple as aspirating mucus during my sleep (which I’m hoping is the cause), to lung cancer if the spots they are seeing don’t improve, thus prompting a painful lung biopsy to determine what it is.
After I’ve set up my rides for the day, I begin my voice therapy. Because my disease produces scar tissue throughout my body, including my eyes, lungs, connective tissues, GI tract and now larynx, I have lost my voice for about 2 years. Each day it is extremely painful to talk after 2pm. My voice cracks, I can no longer sing, and I simply run out of air. I’ve avoided talking on the phone to friends and family, which has been extremely isolating since moving away from home 12 months ago. I started with a speech pathologist once the ear, nose and throat doctor discovered the nodules on my vocal chords that were stopping me from being able to talk due to inflammation. I am happy to report that after 3 months, I can talk almost the whole day with less pain and I am ‘relearning’ how to save my voice and talk with less effort. Considering I pay for my athletic pursuits as a speaker, this is critical to keeping a roof over my head.
Once my voice exercises are finished and my stomach has calmed itself, I’m onto my first workout of the day- either a bike or run or both. When that’s finished, I try to restore my protein and take in lots of electrolytes. I lose a lot of magnesium and potassium through diarrhea daily, so it’s critical that I stay on top of it. I swim each day at noon. Not by choice, but because it’s the only session that is a coached workout where I stand a chance of seeing the pool lanes and wall without too much difficulty. The early morning sessions are ideal for my schedule, but the dark lighting above and the bright underwater glaring lights make it impossible for me to see either the bottom of the pool or the wall or the lane lines and I end up consistently hurting myself quite badly. So, it’s off to swim at noon I go.
Next it’s off to one of many possible doctor’s appointments. The lungs, larynx and GI tract seem to all be misbehaving as of late, so mostly it’s a CT scan, a lab test or a follow-up appointment with one of the specialists to check in on how the new treatment protocol is working or not. And finally, my eyes. As many of you know, I’ve lost roughly 98% of my peripheral vision, leaving me with just a pinhole in the very middle of each eye. I was blessed for almost 20 years that my disease never attacked the center of my retina; until December. I used to see clearly through that pinhole and the rest of the world was black. Now that pinhole is being threatened by new lesions and inflammation, all related to my entire whole body immune disease.
My safest option to protect it has been surgery. 6 years ago we tried chemotherapy to slow it down unsuccessfully. I have implants in both of my eyes that now release a time-controlled drug to keep my disease in check. Currently, I’m discussing with my team the benefits of reattempting chemo in the fall after my season has ended due to some recent surgical complications that were very scary and unexpected. But I’m in the ‘bonus’ round, if you will. I was never supposed to see this long. My disease should have taken my sight completely years ago. I’m an anomaly. So everything going forward for my eye disease team is uncharted territory. So we shall ‘see’ what happens and decide from there going forward.
And then there’s the pain of training. The soreness. The strains to your neck, your calves, your shoulders from swimming 20,000 yards per week. This is self inflicted pain. It causes constant scar tissue in my muscles that needs almost daily manipulation to break up successfully. This isn’t normal. It’s my disease at work. Foam rollers, ‘torture sticks’ as I call them, laying on a lacrosse ball at night, sports massage, acupuncture, chiropractic, Active Release Techniques, Rolfing. These treatments enable me to compete with the best in the world and keep the pain and inflammation in check. I could stop training for Tokyo, but would these symptoms go away? Likely the answer is no.
Being a Patient Advocate is what I am most proud of
There’s the financial pain when I go to CVS and discover I can’t afford my Medicare Co-pays for my prescription meds that month. I pay a little over $850/ Month just in prescription co-pays alone. That’s AFTER insurance. There’s the $60 Uber round trip just to get to the doctor because handicap transit can’t take me last minute for an emergency appointment and my eye pressure is sky high. Then the 40 office copay. Then the 20% out of pocket for the emergency procedure, which will be another $600. So I choose that week- do I eat healthy food or do I use that money for my prescriptions or to save my eyesight? It’s a nasty choice that I’m having to make more often than I’m comfortable admitting.
Finally, there’s the isolation that comes with having a chronic disease that’s from a faulty immune system. A; I can’t really afford to go out at night. B) I’m usually too tired from training to go out at night anyway, and C) with all my dietary restrictions and general ‘no alcohol’ rule on a training day, it takes the fun out of going out and D) finally, I’m completely and justifiably so, petrified of germs, and hate being in big public places or areas with lots of kids as any infection will trigger my eye disease to progress further and start me back on chemo or surgery almost instantly. So, it’s the couch with Netflix most nights.
And there’s the pain that I just am too overwhelmed to share this with people, as It would be exhausting to listen to my barrage of ailments (like what I’ve just done here- LOL). Complaining isn’t fun and it gets you nowhere. Action does. So, I act!
But here it goes. Because, you see, everyone is fighting a battle we know nothing about behind closed doors. I suppose that’s the point of this post. I’m not posting this for pity or sympathy or for virtual high fives. I’m posting it because it’s important to remember that social media is just that- media. It’s like the ‘fridge door’ for the world to see- all the happy awesome moments, and maybe the sad ones too. But I want others to know that behind every photo of you swimming with dolphins in Mexico and behind every sweet photo of mama holding her newborn there’s a story. And FB is all about ‘image management’. Every now and then it’s ok to let people peek behind the curtain. Because when you get me? You get ALL of me. Now I wanna see some REAL posts this week. The good, the bad and the ugly criers out there. You know who you are. Let’s do this. #OVERSHARE #Pullbackthecurtain
My new friends Tsunami and Noel could be my swim guides! Dolphins are FAST!!!
