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The Health Battle My Social Media Followers Won't See in My Travel Photos

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My job consists of a lot of social media and my friends and family are always envious of my travels, especially when it includes photographs of delicious food and behind-the-scenes locations. What most of them don’t know is that I was sitting at that dinner table making sure I discreetly took my medication and counting the moments until I could be in a comfortable bed.

It’s also not spelled out that I had breakfast in bed because I couldn’t get out of bed, whether it was from overwhelming fatigue, pain, an illness that my poor immune system picked up, or a connective tissue I had recently injured.

woman at amphitheater in pula, croatia
Marcia at the Amphitheater in Pula, Croatia, in June 2015.

The hardest part is knowing that I am at a strong point in my career. I have built my reputation as a writer and influencer in the travel, food, and wine world, after years as a well-respected tennis writer. I have a consistent gig on television talking about my travels. I love what I do, but I finally had to face the fact that I just can’t do it the same way anymore.

I have managed to battle through fibromyalgia for many years. The majority of people who know me haven’t even known I had it. While I politely declined dinner invitations during tennis tournaments and said I had too much work, it was usually because I needed a painkiller, a hot bath, and an early bedtime. When I “disappeared” from events, I was sometimes just sitting in my car hoping the pain would go away.

It’s not easy pretending to feel good when you don’t, but my career was important to me, both as a way to pay the bills and because I really enjoyed it. I couldn’t take a chance of losing work because I was perceived as not healthy enough to do it.

In December 2012, after my fifth lumpectomy, I underwent a double mastectomy and reconstruction. With a family full of breast cancer and three early stage masses of my own, my doctors and I felt it was the way to go.

What followed over the next two years was a total of 10 surgeries, massive staph infections, a collapsed lung, blood transfusions, and multiple bouts with pneumonia. I also spent many months attached to a wound vac. I was just told I had a “weak immune system and lungs,” but it was never investigated further.

I could barely move during that time and tried to take painkillers only when I had to. I still worked every moment I could between surgery.

I was finally feeling pretty good and just back to dealing with the fibromyalgia in the beginning of 2015. It was actually the longest period (about six months) I had worked full time straight for three years.

I decided to go back to something I had previously done for most of my adult life, covering the U.S. Open Tennis Championships. I knew it was tough on my fibromyalgia, but I began to have some other strange symptoms: I was getting nauseous and rashes in the sun; I had constant eye pain; I was getting migraines, something not normal for me; and I was feeling so weak at times I really felt I couldn’t move.

These symptoms continued to worsen over the next few months. With the eye pain, I especially found work difficulty too complete. My concentration was off. I was sleeping 12 hours a day and still felt I needed two naps.

The real clue came when I got very sick from even one glass of wine or a cocktail. Given the fact that I had been a wine and spirits writer for years, this was certainly new.

The eye pain became horrible and I went to the eye doctor in January 2016. He told me the inflammation behind my eyeballs was so bad it had scratched them! He put me on steroid drops and moisturizing drops. He also told me that was something he had only seen in autoimmune diseases.

That set off a red flag since my mom has lupus and her mother had rheumatoid arthritis. I called my internist. She agreed that my symptoms pointed toward a connective tissue disease and, when my blood work initially showed a positive ANA (anti-nuclear antibodies) with lupus titers, I was sent to a rheumatologist.

Over the past 10 months, I have gathered a team of doctors I see regularly to deal with: muscle and joint pain; immune system issues such as frequent infections; rashes, photosensitivity, eye pain; dryness and swelling; neuropathy, headaches; concentration problems; and, the most serious, lung issues that include COPD, emphysema, and asthma.

Since my bloodwork continues to indicate connective tissue disease, but not specifically point enough to one, my doctors’ visits offer diagnosis of lupus, scleroderma, Sjogren’s syndrome, and mixed connective tissue disease. The rheumatologist, who has the ultimate decision, has me categorized as “undifferentiated connective tissue disease,” which basically means that I definitely have one of the above. He says it may never be clear which one.

A lot of my friends can’t believe I’m satisfied with this diagnosis. Truthfully, it doesn’t matter. None of those diseases have cures. All of those diseases are progressive. As long as I have doctors who are treating my problems, keeping me alive, and slowing the disease progression, a label does not matter to me.

It’s taken me months to come to terms with the fact that my life is never going to be the same. I recently tore a tendon and ruptured a ligament in my ankle. It required major surgery, an additional surgery, infections, and a lot of rehab. In a strange way, I was relieved. It was so much easier to tell people that I couldn’t go places, stay up late, am exhausted, and have pain from the ankle, than admitting I’ll mostly be feeling this way all the time from now on.

adult daughter and mom at restaurant on cruise ship
Seabourn invited Marcia to write about their luxury cruise in 2013 and she took her mom along for the trip.

I’ve had to give up a lot of work and a lot of trips. My travel now is never alone and never with long schedules. There must be rest time. The same goes for my work at home. I’m lucky if I can get in a total of a couple of hours a day with long breaks. I can no longer teach, something I enjoyed doing. I’ve done this story over months, a few minutes at a time.

I can’t sit at the computer for long so I only take occasional freelance work now if they have long deadlines since I never know how I’ll be feeling. My blog is now four months behind since it’s now eight hours of work over three days, not one, with frequent breaks. Some days I can’t even get anything done.

What I can do is not give up. I guess that comes from being raised by two disabled parents. I do yoga and Pilates for a little bit every day I can, I walk when I can, I am trying various supplements and diets, and I make sure I rest when I start to feel the slightest bit sick so it doesn’t get serious. This illness may have taken my career, but it hasn’t taken my fight for life.

I’m not writing all this for sympathy or shock value, it’s for sensitivity. The next time you see beautiful photos of attractions, scenery, and food from me — or someone else — don’t presume. Many chronic illnesses are “invisible.” There’s a lot between those photos that you don’t see.

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Originally published: November 28, 2016
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