About a year ago, I lost the one form of exercise I could handle. Due to constant joint and muscle pain, there is very little exercise I can do without putting myself at risk. But I try not to focus on what I can’t do. Instead, I took off the running shoes, put on a bathing suit and converted a favorite childhood pastime into a preferred exercise routine. After joining a local gym with a pool, I committed to swimming laps three times a week. I’m not an Olympian, by any means, but I always showed up. This little achievement made me feel like I had some level of control over my life, and my body. And this sense of control motivated me to stick with my diet plan. Even though I can’t run miles every week, I still managed to stay relatively thin. I was proud of myself. This was able to compartmentalize my feelings about my illness and learn to be happy with my body.
I held onto my swimming routine for dear life when I relocated to my corporate headquarters. I became friendly with a group of athletic, successful and gorgeous ladies. I’m proud that these girls count me among their group of friends, but it was tempting to feel badly about myself because I don’t — and can’t — compare to them. I continued swimming as a way cope with these destructive feelings of inadequacy that were always lurking so close to the surface.
Everything changed for me last summer. It all began when my parents threw a party to celebrate their 50th wedding anniversary. (Can you believe it? Go mom and dad!) I wanted to look nice for the event — something I knew would please my mother — so I ignored my doctors’ advice and decided to wear my contact lenses. Well, I will never make that mistake again.
The celebration was truly wonderful. My parents shared their celebration with close family friends who were also celebrating their 50th. My parents and the other couple have known each other for the entirety of their 50-year marriage. The day couldn’t have been more joyous, and I felt blessed to be the daughter of parents who were still so dedicated to one another and to their family. Life hasn’t been easy for me in so many ways, but in this department I recognize that it has been seamless.
After the party, I put my specs back on and drove back to Philadelphia with my then boyfriend and current domestic partner. The following weekend I went to the beach with a couple of girlfriends. After spending the day soaking up some sun (well, I was under an umbrella) we went to meet up with another group of friends for dinner. When we walked into the dimly lit restaurant I realized that I had left my glasses at home. I only had the prescription sunglasses I had been wearing all day. Not knowing what to do, I rummaged through my bag to find a back-up. There I found a spare pair of contact lenses that I had thrown in my bag before going to my parent’s party. Since I couldn’t wear sunglasses at night (no disrespect, Corey Hart) and I can’t function without visual aid, I figured I could wear the contact lenses for another few hours. “What could be the risk of just a few hours of contact use, I thought?” In my eyes they went.
When I got home later that evening I immediately removed my contacts and flushed my eyes with saline. My left eye felt a bit weird but there has been a sty there for as long as I can remember, so I didn’t pay too much attention to it. But by the next morning the discomfort had turned into noticeable pain. I tried another round of saline, I used a warm compress, I flushed my eye out under a sink. Nothing I did made it any better.
By 10PM that night I knew something would have to be done. My friend brought me to the eye hospital emergency room where it was discovered that a foreign object, probably a grain of sand, was glued to my eyeball. The doctor and I agreed that the dryness of my eye, also a product of my ‘autoimmuned’ body, provided the optimal environment for this to occur. Sigh. The physician removed the object from my eye and then sent me home with some antibiotic goop to squirt into my eye for the next ten days.
And this is where it all began to fall apart. That antibiotic ointment was very difficult to use. I had to put it along my lower eyelid and then close my eye to let it spread around. Inevitably, a lot of that goop got on my face. Within a couple of days after the eye crisis, I got a nasty rash on my chin. I kept hitting it with cortisone cream but that didn’t seem to help. When I went for my routine swim later that week, the rash seemed to spread. So I put even more cortisone on my face. And within a couple of hours the rash spread from my chin to the area on both sides of my mouth and nose. I went to the pharmacy to find a different brand of cortisone, thinking that maybe I had developed an allergic reaction to something in the old brand. That seemed to do the trick! The rash completely dissipated and life as I knew it returned to normal, or rather, my version of normal.
The next time I went in the pool I used the cortisone again as a prophylactic treatment, and then this happened. I bet you know the expression, “It’s not as bad as it looks.” Well, this was the opposite. Although my face looked really bad, the pain and itchiness I felt was even harder to handle. I tried using ice to get the inflammation down but as soon as the ice pack came off my face, the burning pain came right back. I didn’t know what to do and unfortunately, none of the dermatologists in the entire city of Philadelphia seemed to have an opening for an appointment. My boyfriend and I did a search on Google to identify the marks on my face. We used a few carefully chosen keywords to conduct our search and within minutes, realized I had developed a nasty case of perioral dermatitis. Perioral dermatitis is often triggered by overuse of cortisone, so it’s not a surprise that the application of the cortisone cream made things worse. I have been dealing with chronic dermatitis and urticaria (hives) for as long as I can remember, but I had never encountered anything like this.
I went to see my primary care physician who concurred with the diagnosis and gave me a ten-day course of oral doxycycline. The rash cleared up, although my skin was still flaky and tender in the area around my nose. I let two weeks pass before trying to get back into the pool. But when I did, the rash came right back, and with a vengeance. I was such as mess that I had to work from home for an entire week. I dialed into all of my meetings using WebEx and participated in a voice that was muffled by the ice pack that I had permanently held to my skin. I even slept with an ice pack on my face (that is, when the pain subsided enough to allow me to sleep).
By then my pleas to see my dermatologist had been heard. His assistant called me as soon as there was a cancellation to get me in. I had already treated myself with antibiotics (after calling my PCP and asking him to write me a refill), and I took a couple of low dose prednisone to get the swelling and pain under control. When I met with my dermatologist much evidence of the rash had dissipated, but I made sure to take pictures before the appointment so that we could discuss my case. Again, my doctor concurred with my diagnosis but he wrote me a six-week course of meds. He felt strongly that the cortisone use was the culprit and he suggested I get back in the pool. We made a follow-up appointment for late September.
At that point I was terrified to go back in the pool. But I didn’t want to stop exercising altogether. I froze my gym membership and instead, used the elliptical machine in the residential fitness center that I had access to at the time. But within just a few weeks of using the elliptical – something that was very challenging given the extreme muscle weakness in my quad muscles – an old ankle injury resurfaced. I had to work from home again because I wasn’t able to walk down the block.
A couple of days later I wrapped my ankle in an ace bandage, threw on a pair of flats and returned to work. I remember limping into a meeting and then limping down the hallway to get back to my desk. Once I thought the “sprain” was healed, I put on my most comfortable pair of pumps and attended to business as usual. But there was nothing usual about the circumstances in my life. In fact, even those Clarks pumps were enough to trigger my ankle injury. I remember grimacing as I tried to return to my car in the garage at the end of a work day. The five minute walk to the parking garage took me twenty minutes.
Once again, there wasn’t a single orthopedic doctor in Philadelphia with availability. I made an appointment that was a month away and then administered self-care by limiting my mobility entirely. Any heels I owned were put away and traded in for flats. The ankle bandage became a constant accessory. The elliptical seemed to be out for good. Still wanting to exercise so I could continue the illusion that I had some semblance of control over my body, I wondered if it might be safe to return to the pool. My dermatologist appointment was around the corner so I gave the pool another try. I figured that if the rash came back at least I would see my dermatologist right away. And well, it’s a good thing I planned it that way because the rash came right back, though luckily this time wasn’t as bad as the last. When I saw my doctor he said he was reluctant to prescribe another course of full strength doxycycline (and for good reason – perpetual antibiotic use can be toxic!). My doctor chose instead to prescribe Oracea, a lower strength formulation of doxycycline used to treat the flushing associated with rosacea. He said it would be safe to stay on it long-term and since I didn’t want to keep seeing and feeling that red, itchy, painful rash, I agreed to it.
As for my ankle, it took many months and an MRI test before I was informed that what I had in my ankle was not a sprain but rather, an osteochondral defect of the joint. I was given a referral to a local surgeon but, well, that surgeon didn’t have any availability for another month. (Are you starting to get a feel for my life?)
I was completely devastated. I couldn’t swim and I couldn’t use the elliptical. I had also been warned many years earlier, when I tore the cartilage in my wrist after doing dips, not to even think about doing yoga. What was I to do? Well, I will tell you what I did. I gave up. I ate everything and gained 30 pounds. All of the size four clothes I bought during my swimming days had to be hung at the back of my closet. I also stopped being social because I found it so hard to be around people who were active when I couldn’t manage to do anything without jeopardizing my wellbeing. My illusion that I had some level of control of my body had been replaced by utter misery.
It’s now one year after my parents’ 50th anniversary party. My parents have been married for 51 years. It took the better part of a year for me to see a surgeon and come up with a game plan to treat my ankle. I pledged to stay away from exercise and shoes that would put undue stress on my foot and in exchange, my physician said I could wait until the fall for a surgery. Hoping to have a better summer this year, I sheepishly decided to give the pool another try. I downloaded a free pass to a LA Fitness that is close to where I work and gave it a whirl. I was so nervous about getting in the pool that I barely made it to the locker room. As I told the membership advisor a bit about my history and objective for my visit, she surprisingly pulled out a document that provided me with the chlorine and pH levels of the pool. Unlike my previous gym, the folks at LA Fitness routinely monitor both the chlorine and pH levels to minimize skin and eye irritation. According to CDC recommendations, pH levels should be between 7.2-7.8 and chlorine levels should be between 1-3 parts per million. The chlorine levels in the LA Fitness pool were just a bit high but the pH levels were spot on. I swam only ten laps to test my tolerance to the water. My dermatologist had suggested I put Vaseline on my skin to protect it from chlorine irritation, but I later learned that Vaseline was actually an irritant. I thought back to the eye goop and realized the ointment was the first in a string of offenses that caused the perioral dermatitis to occur. So I went into the pool with my skin completely exposed. Upon getting out of the pool, I washed my face with DermaSport Athletic Face Wash and I used Malibu Swimmers Shampoo to remove the chlorine from my hair. (Note: The facial cleanser is a bit drying. To deal with this, I use a VERY small amount of CeraVe moisturizing cream on my face. The CeraVe cream does have a small amount of petroleum in it so to avoid a reaction I rub the cream into my hands and then gently pat my face with my hands.) I then went home and waited for signs of a reaction. Four hours after my pool visit I did not show any signs of a rash. I determined that I was completely in the clear! Since then, I have joined the LA Fitness gym and I am back on track. I visit the pool three times a week. I’m currently just trying to get my endurance back up, but I know I’ll get there in time. Just getting in a pool on a regular basis feels like a huge victory.
Today I was speaking to a friend about how excited I was to return to the pool to swim laps. That friend also swims laps, but she uses the gym I used to belong to when I was living in the city. Nobody there has ever given her a measurement of the pH but my friend, who does not have autoimmune issues, says that her skin is itchy every time she gets out of the pool. She and I suspect the pH levels in the gym are jacked all the way up. If I were the kind to file lawsuits, I would have already met with a lawyer. Instead, I’m planning to make a nasty phone call to teach the staff about the effects of poorly managed swimming environments.
So, here’s the lesson I learned from all of this: If you’re suffering from perioral dermatitis, stay away from any ointment, do NOT use cortisone cream on your face, doxycycline works but try a lower dose over a longer term if the rash recurs, and if you swim make sure you know the pH! From now on, I won’t go in a pool until I know that the pH levels are in the safe zone.
I’m pleased to be back in action. I still have the ankle to deal with so the year of cumulative casualties has not stopped reaping its effects. And I will NEVER wear contact lenses again. But at least I made it through that hellish year. I learned to accept that I don’t have any control over my body, but I’m also learning to appreciate the small victories. Hopefully this summer season will be a lot better than the last. For now, I’m celebrating my independence… on many levels.
Happy Independence Day!