I don't remember if it was heat sensitivity, joint pain or the intense dizzy spells that I started to notice first. I just remember that for some reason, I was sweating a lot whenever it was above 50 degrees, and it was embarrassing. I learned how to wear layers so that I could go from sweater to tank top before my glasses could fog up. I began avoiding going anywhere when it was hot outside. I started to notice that working out hurt (a lot) and it wasn't my technique or poor shoe quality, my bones just ached and burned and screamed the minute I put them to use. And I remember thinking to myself, "What in the world? Am I diabetic now or something??" every time I had to grab on to the nearest stationary object to keep myself from falling. Those dizzy spells were intense, almost as if promising a path to freedom if I succumbed to their peripheral darkness.
The rash came next. It started with a perfectly round little splotch on my left cheek. It took up residence, unpacked and made itself at home on my face. It grew. It did not go away. I went to the dermatologist and at first they thought it could be a "GR Tumor" or ring worm. Turns out, it wasn't a GR tumor so they continued with the alleged ring worm path and took a scraping to affirm said invader.
"How in the world can it be ring worm?" I asked, "I have a fish!"
Perhaps it was one of your friends' pets...try this anti-fungal and come back in two weeks. Okay, give me the cream, if you insist.
Cream didn't work, big surprise. But they now insisted that it was 'a stubborn case of ring worm'. More cream. And the rash continued to grow. It was now about the size of a half dollar. I began to believe that fish had not adapted to life in little bowls but had perhaps evolved to spite their owners with the ability to induce bouts of mysterious and stubborn ring worm.
Then my hands changed. They swelled up like water balloons, turned blue and purple, and they hurt like hell. Every time I grasped anything, opened a door, held on to my steering wheel, I felt as if these swollen squishy fingers were simply going to burst open and gush out. They were so tight and filled with fluid. Balloon hands. Like the marshmallow guy on those tire commercials...only purple. My mornings had begun to resemble something more of a scenario you would face when you were 80, not 28. It took hours to get moving and to work through the joint pain enough to pull off a shower. I knew deep inside that something was wrong but I really didn't want to accept it-I was too young and had always been healthy, for the most part. But I knew. I began to wonder if perhaps it wasn't diabetes but rheumatoid arthritis, or maybe both...either way, it was time to go to a doctor.
I showed up for my first visit with a new primary care provider with my battle list in hand and a hint of excitement (I hadn't seen a doctor since moving to Oklahoma other than the dermatologist). Maybe she could solve the mystery ring worm rash problem while she tended to these mitten hands of mine. I had written out a list of all the symptoms I had been experiencing including the symptoms mentioned above, a low grade fever, trouble sleeping, headaches and muscle weakness. I was determined not to leave her office until I had answers, especially on my theory of fish evolution. I didn't have to put up much of a fight. She took one look at me and asked a few pointed questions that I feared were already leading away from the ring worm theory. Suddenly I really wanted to have ring worm! She noticed that I was clutching a piece of paper in my hands as if someone had thrown my a lifeline and were I to let go I would be washed down river never to be recovered.
She said, "Did you bring a list?!"
She laughed about my list (not in a mocking manner) and then asked to see the list.
"It isn't ring worm. You have lupus."
"I think you have lupus. I can't tell you for sure yet but we are going to run some tests. And stay out of the sun, it will make it worse." She explained that this massive panel of blood tests would take a while to come back and then they would have to run even more if I came back with abnormal results. If I wanted to speed up the diagnosis I should call my dermatologist and ask him do a biopsy on the rash to look for lupus. It would be a lot faster this way. As I sat downstairs in the lab wincing through the 13th vial of blood I remember thinking to myself, "What in the world is lupus??" and "What does the sun have to do with it?" I drove home in a state of shock. Deciding not to follow through on my overwhelming urge to go out and binge drink, I called my dermatologist instead.
"My primary thinks it is lupus, can we do a biopsy?"
I will never forget the sound my dermatologist made...a slow but intense and pained breath as he realized that no, it was not in fact ring worm. I couldn't see him but I could very clearly read the 'oh shit' that he must of mouthed during that labored inhale. I love him for that. They had me scheduled for a biopsy the next morning.
It was lupus. She was right, it didn't take long. They called me with the biopsy results two days later. You know it isn't ever good when they start the call with, "We have your test results, are you sitting down?" My heart sank. I already knew it was lupus-the internet had done a fine job verifying this-but it still sucked hearing it, as if being said out loud some how gave the disease permission to proceed with its takeover.
I had lupus. I was now allergic to the sun. Actually, I was 100% photosensitive. I couldn't be under fluorescent light either. I would deteriorate in minutes if I dared a trip to the store, a mall run, or heaven forbid, a walk around the block. I was now a prisoner of darkness condemned to a life of hiding in the shadows. I wore long sleeves, pants, sunglasses, a hat and even light colored gloves when I drove. It is REALLY hot in Oklahoma during the summer and heat intolerance aside, all of this 'protection' was miserable at best.
I received word from my contact at the Peace Corps that the Master's International graduate program I had hoped to attend was out. I couldn't be stationed in a jungle somewhere with a life-threatening illness, and no, I couldn't appeal. I couldn't work anywhere that had lights...tricky because there is light everywhere. I kept my job waiting tables during the day (I had just gotten this job to help pay down my credit card debt because you can't leave the country with the Peace Corps if you have any amount of outstanding debt) but I needed another job to make ends meet now that my plans for the future had been so cruelly vetoed. So I took a job bartending at night, it was dark and most people couldn't see the rash through all the smoke. They were short shifts and I could nap between. It worked.
It was startling how fast my life changed after my diagnosis. I had 7 specialists, one for every body system that lupus had invaded. I went to the doctor at least twice a week. I took a lot of drugs, up to 43 pills a day at the height of it all. Drugs you never even knew existed for problems you also didn't know existed, unless you get lupus. I went through chemo. It sucked, just like you hear that it does. Most of what I found on the internet or heard from doctors was that nowadays patients could lead 'normal' lives with lupus as long as they had adequate health care. I found this to be false. There is nothing normal about having lupus. It is an invisible disease (without the rash anyway) and it is isolating. Very, very isolating. Most of the people in my world were gone. You can only decline so many invites before they are no longer extended. And unless you are really good at asking for help, you live alone with your lupus. Maybe the drugs would keep me alive but it wasn't much of a life anymore. My hope for the future was gone and my life was now solely about survival.
Right after beginning chemo I started flying up to the Mayo Clinic in Rochester, MN. My doctors were having a hard time treating my lupus in Tulsa and I was hoping the Mayo could help. It is an amazing place, one I highly recommend to anyone needing answers or if you have a hard-to-treat or diagnose illness. They rock.
Unfortunately, lupus stumped my team in Rochester as well. I had the kind of lupus that just didn't respond to medical therapy. The rash now covered my entire face, my chest, my arms and various other places on my body. My other symptoms had progressed and new symptoms had popped up. The side effects of the drugs had started to show their ugly heads as well. I had muscle atrophy, bone loss and a really fat face. Most of my hair had fallen out. After about a year of traveling back and forth to Rochester my doctors told me that I would just have to live with my lupus, until it killed me anyway, and the lupus I had might just do that. Like the alleged ring worm, it was a stubborn case. So stubborn, even a certain diagnosis was evaded. I began to hear that it might be mixed connective tissue disease (MCTD) in addition to systemic lupus...they just didn't know and at this point, it was hard to decipher what symptoms were from the disease(s) and what was due to toxic drugs. We would just have to wait and see what happened next.
This is no way to 'live'. So I began to look for different answers. Fortunately, so did my boyfriend Mike (though we weren't dating at the time). He was fascinated by my light allergy and knew that the drugs weren't working. While I lurked around on lupus blogs and read up on alternative therapies and diets, he looked for the link between lupus and light. What he found changed our world forever.
Enter Hugh McGrath, MD, the pioneer of UVA1 Phototherapy and systemic lupus.
"You may be mad at me, I don't know, but I found this book and I think you should take a look at it" says Mike as he plops a thin black and yellow book down in front of me. "I had it overnighted", he said with a smile that twitched with anxiety, "I hope you don't mind."
Lupus Underground, by Anthony DeBartolo.
"A patient's case for long-ignored drug-free non-patentable counter-intuitive therapy that actually works" I read on the cover. Then I read the introduction...
"If the demonstrated potential of UVA1 light to improve the lives of lupus sufferers were more publicly known, if research concerning both benefits and risks were accurately presented, if critics were fair, if our pharmaceutical industry didn't hold excessive power over medical research and practice...Lupus Underground would not have needed to be written. If UVA1 light didn't alleviate fatigue, it wouldn't have been."
What was this and why hadn't I heard of it??
By the next morning I had read the entire book. I was convinced. This light would work. Now we just had to figure out how to get into the light. Most clinics and hospitals do not have UVA1 equipment and in addition, most doctors are not familiar with the light nor do they know of its success in treating lupus disease activity. I found out that the Mayo Clinic had a UVA1 machine they used for scleroderma and cutaneous t-cell lymphoma. I wanted to try it, just a few sessions while I was up there for my regular check ups. Neither my dermatologist or rheumatologist had ever heard of treating lupus with UVA1 and that they didn't think it was a good idea. I could go into renal failure. I had done a lot of research at this point and not once had I come across a bad result, in fact, all of the studies I read showed UVA1 to be successful AND safe.
I spent an extra week up there in Rochester 'harassing' my doctors. I was there when they got to work, I was there when they left. I held open the elevator doors begging for just 5 minutes in the light. I would sign a waiver-I even wrote one up! I brought them cookies and waited all day every day outside their offices so that I could give them copies of my research. I had printed out studies and clinical trials for them, highlighted and flagged where I thought the most important points of discussion were, indexed the notebooks and included a copy of Lupus Underground in each 'gift' basket (also highlighted and flagged). I went to the light lab and stalked the nurses there. I took pictures of their UVA1 machine and informed all of them on the merits of UVA1 phototherapy and lupus. I almost got in, almost...
They just didn't know enough and explained that although they were a research hospital, they were slow to adopt new therapies. They just didn't know what would happen and weren't ready to let me into their light machine. Okay, I got it, I understood. I was disappointed but I understood and oh was I determined.
"Thank you for putting up with me - I am not going to take the CellCept (next drug in line), and I am tapering off my other drugs. And I am going to go home and build my own unit," I informed my doctor.
He smiled, looked down for a minute and said, "I am sure you are." After another pause, he added, "Would you like to schedule a four month follow up?" Ha! He was curious! I had at least gotten their attention and now they knew this was out there...I bet he would read those clinical trials now!
Mike built the unit. He had already ordered a used phototherapy machine off of eBay and it had been delivered by the time my plane landed back in Tulsa. Within a week he had switched out the bulbs and had finished converting it into a UVA1 machine. I was too sick to talk myself into driving over so he came over and picked me up. I guess the engineer in him was even more curious than I at the time. Or maybe I was just that sick. Either way, he saved my life.
We both stood in that garage for hours just staring at the machine. What in the world were we thinking? This was crazy! We were like mad scientists doing an experiment down in the secret dungeons. "You'll shoot your eye out...!" Or in my case, renal failure would be next. I knew he was nervous. After all, he had found the book, built the machine and delivered me to its door. I on the other hand didn't have anything to lose at this point. I was done with the drugs and we both knew what would happen next with my lupus: organ failure. So what would it matter if we were wrong and I had a bad reaction? But I was still nervous. What if he got in trouble for going far out of his way to help me?
We had done the research and we had faith in this light...screw it! I stuck my hand in for a minute. It didn't smoke or burn or turn me into a puddle of water on the floor like the wicked witch. Nor did I feel my kidneys begin their revolt. I went ahead and said one more prayer and stepped into the light.
10 minutes later we were both standing in front of his bathroom mirror watching my face. Something was different. My skin was more hydrated and my eyes were brighter. My rash appeared to be moving. Could this really be happening?? Could 3 minutes of light change my lupus when nothing else had worked? And how crazy that a wavelength of light may do the trick when other light would only hurt me!
The next morning I bolted out of bed before 8 am. I rushed into my bathroom and stared. Unbelievable! My rash was getting better and fast! It was already 50% gone, if not more. I was awake (early in the morning to boot) and present. My lupus fog had lifted and I had my brain back. I could think in full sentences. I didn't need hours to get moving and the pain in my joints wasn't as bad. I had energy. This was nothing other than mind-blowing. I thought no, this will just wear off and I'll be the same 'lupie' I was yesterday by the end of my shifts at work today. But it didn't wear off. In fact, over the next few weeks I continued to improve. I remember about 3 weeks in while taking a shower I was stunned because I realized I had just washed my foot without using the other arm to steady myself so I didn't fall. Even my balance had returned.
That was it. I just got better. I still had days where I needed to sleep and I still tired easily but the fatigue was nothing compared to before. After a few months the joint pain had improved by 95%. I could shower every morning after only a brief prep session with my warm and comforting coffee mug (in silence of course). I was even wearing less clothes, had ditched the gloves completely and only wore a hat if I was going to be out for more than a few minutes. I began accepting offers to go out for dinner or to a concert. My rash was gone and my hair was growing back. I was living again.
At my four month follow up with the Mayo Clinic my dermatologist was stunned. Not surprised so much, but definitely stunned. He asked about the drugs and verified that I was (as I had promised) not taking them. UVA1 had done this, not drugs, not diet changes. Out of the 23 prescriptions I had been taking before I was now only on one pill, Plaquenil, and my primary care physician had recently agreed to let me taper off of it as long as my progress continued. I hadn't changed anything else on purpose so that we would know it was the light doing the work. He ordered the usual lupus panel and said I should have the results the next day in time for my appointment with my rheumatologist. Then he sent me down to photography to document my now rash-free and unswollen face for the record. When I arrived the next morning, my rheumy had already discussed the whole thing with my dermatologist and was just sitting there with a smile on his face.
"Wow. You DO look better!" (I was very secretly pleased that they had already had a discussion on this...the light can be contagious).
More stunned as my lab results rolled in one after the other reporting 'normal' levels. My ANA was not elevated and all of my inflammation markers were normal. Even my platelets and white blood cell count had reversed. Not only had my symptom presentation and disease activity changed, so had my serologies. This light had done what drugs could not. I was in remission. Even better, my doctors both had read some of the research on UVA1. I knew that they now knew that this was an option for lupus patients. It may still be a fringe option, but they knew about it, had seen it work, and that made me happy.
So here I am almost 5 years later. Still no lupus. I recently had a panel done and it was clear. I still get tired when I overdo it. I have to watch my stress and make sure to keep it under control. But I go outside. Much like busting out of prison after years of captivity I feel an overwhelming sense of freedom on a daily basis. When I get dressed in shorts and a tank top, when I go out to lunch, or when I look in the mirror. For a while, as I continued to get better, I would sometimes catch myself having to remind myself that I could in fact go out to the garden or that I could in fact go to a show. I had been saying "I can't" for so many years that my reflex at times was still no. I would stop and smile and remind myself that the light had changed all of that...I could now. It has been so long now that reflex is gone. UVA1 phototherapy not only saved my life, it gave it back. It gave me back my hope, my face, my thoughts, and an ability to plan a future. I am free now and have been truly enlightened. I am on a mission to spread the word - don't be in the dark!!