Friday, July 8, 2011
Be Your Own Advocate--Angela Coulombe
In August of 2007 I had just completed three things on my life’s “to-do list."
1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do
2. Appear on stage in a solo dance performance
3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 wah-hey!)
On top of a full-time job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.
First Signs of Lyme Disease
The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought, “No big deal. With a couple weeks of OT and rest, I’ll be fine.” I started therapy but after three weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming sore, and it was difficult to sleep on either side due to the shoulder pain.
The OT’s were baffled as to why the swelling in my knee, now very noticeable even through trousers, wasn’t getting better. They scheduled an MRI. The pain in my leg fluctuated from highly uncomfortable to completely unbearable. I had been on Aleve and ibuprofen for weeks without it touching the pain or swelling, and I hoped the MRI would finally pinpoint the problem.
The MRI showed no major injury, just unspecified inflammation. It was now September, and my boys were back in school. At this stage all my joints were sore. To top it off, I seemed to have come down with a stomach bug or some kind of “flu,” as I felt run down, constantly tired, and sick to my stomach. I started to have bad headaches.
The breaking point came one Saturday morning in mid-September. After bed hopping most of the night before, trying to find the best mattress in the house to sleep on, I settled on the bed in the spare room. By this time I could barely sleep for more than an hour at a time at night, needing to roll over to alleviate pain in either my shoulders, back, or hips. The phone rang at 8 am that Saturday morning, I tried to get out of bed to answer it but couldn’t. No matter what I did I could neither push myself up on my elbows to get up, nor swing my legs around to get up. I was in so much pain I had to scream to my husband to come get me up.
Now I knew things were seriously amiss. It was the weekend and I didn’t want to go to the emergency room, so I decided to ride it out until Monday. Then, out of nowhere, a huge, ugly red ring appeared on my upper arm. I had no idea what it was and had never considered Lyme. I knew next to nothing about the disease or how it was transmitted. As I felt my whole body falling apart, I thought, "Geez, what now?"
The Lyme Diagnosis
My primary care physician (PCP) quickly suspected Lyme but wanted to have it confirmed by an infectious disease (ID) specialist and some blood work. When I arrived at the ID doctor’s, he confirmed the initial Lyme diagnosis, told me I’d be absolutely FINE after three weeks on antibiotics, and sent me off with a prescription. Three weeks later I was anything but fine! I was more sick than I’ve ever been in my life and could barely move. I could no longer raise my arms up over my head, dress myself, move my neck or head from side to side. September passed into October. I tried not to dwell on the fact that just two months prior I was a top athlete now reduced to a near invalid.
I phoned my PCP back and explained to her that I thought I needed more antibiotics and described what was going on. She told me I had to go back to the ID doctor as he was the one who diagnosed Lyme and had prescribed the antibiotics. Feeling hopeful that he’d be able to help me, I phoned him. I explained that I felt even worse than before, was more of an invalid than before, and asked what he thought I should do. Then he dropped a bombshell. He said, “What you are experiencing now has nothing to do with Lyme; we all have aches and pains, and you are simply experiencing the effects of old age and arthritis. (I was only 43 and none of my blood work showed anything arthritis-related.) You don’t need anymore antibiotics!” Reeling from the shock of what I had just heard, I tried to explain that I found the arthritis pretty hard to believe, as I was so physically active two months before. Heck, I ran a bleeding 10k race! That was a waste of breath; he had already hung up on me.
I never felt more alone in all the world as I lay on my couch in disbelief and shock, wondering what the heck I was going to do next. I knew my PCP and this guy weren’t going to help me get better, but I had no clue as to how to help myself.
I could go on and on about the pain, misery and fear I went through, how it affected every aspect of my life and the life of my family, but that’s not the point of this project.
By a stroke of pure fate, I was given the name of a doctor who could help me. I started seeing this doctor in mid-November, 2007. In my naivete, I expected to get well in a month--or possibly two--once I started treatment. What I wasn’t prepared for was the long year and a half ahead of me. Suffice to say, it was an interesting journey, filled with ups and downs and interesting discoveries, even things I had to laugh at. Once I was detoxing in a dry sauna and thought, "I must multi-task, saunas are boring. I’ll just read a bit!" I brought a book, The Road to McCarthy, by Pete McCarthy (a truly fantastic book I wholly recommend) into the sauna to read. This copy belonged to my husband. I noticed the book seemed to have some loose pages. It took me a while to comprehend that it was the heat of the sauna melting the binding, causing the book to fall apart. I again had to laugh at my naivete and stupidity!
Hope in the Face of Lyme
My whole purpose in writing this is to give hope, so here is my statement of hope. After going from being incapable of dressing myself or getting upstairs on my own, going through detox strategies, etc., it has now been fourteen weeks that I have been off all Lyme meds. So far so good. I am back to most of my "pre-Lyme” activities--Tae Kwon Do, dancing, and running, my life saver! In fact, I have been training to run the Beach to Beacon again, can run four miles at the same pace I did prior to Lyme (and I’m two years older), and I’m almost running a single mile faster than I have since I started running as an adult!
Deriving Hope and Inspiration
First of all, I just knew the infectious disease doctor was WRONG! How could I have become arthritic to the point of being unable to get out of bed unassisted in the course of a month and a half when none of my blood work showed any signs of rheumatoid arthritis? As an athlete, I knew my body. I knew the difference between a muscle ache and a torn ligament! I knew what was going on wasn’t “old age!” So my hope, the one I clung to during this time, was to prove the ID doctor wrong and to one day run again and participate in the activities I so enjoy.
After receiving prolonged treatment, I was able to return to the gym in February of 2008. I once could curl 20 lbs easily. Now I had problems lifting just 4 lbs for months, but I hung in there because at least I could lift 2 lbs in each hand and saw that as real progress! The encouragement of my family was crucial; every day they saw small improvements and brought these to my attention. Where I once couldn’t squat down to pick up something off the floor, by July of 2008, I could. Though I felt like I couldn’t run again, my curiosity got the better of me and I tried to run a mile on a treadmill in the basement. I ran my first mile in Feb 2008 in--drum roll--45 minutes. (I could have walked it in the same time or maybe faster?)
That alone inspired me to try every day to improve on that time. By March I had the mile down to 35 minutes; by June, I could run it in 10 minutes! Seeing that I could actually regain what I had lost gave me tremendous hope and inspired me to strive to do more. I don’t think I would be where I am today without the support group of people I had not previously met--or might never have met--had it not have been for Lyme bringing me to them.Their selfless sharing and reaching out sustained me throughout. I also clung to the idea that something positive would have to result from this experience. By sharing my story and other people's stories, I hope to give others in my situation a glimmer of hope and educate others about the effects of chronic Lyme.
Life Changes and Modifications
Granted, my present-day well-being has come with a price. I’ve had to modify my lifestyle to maintain this state of well-being. I can no longer have late nights, excessive stress, or “over do” it on a continual basis. I now realize that when I’m tired, I need to rest; when I’m stressed, I need to let go; when things are out of my control, to say “c’est la vie” and let it stand at that. I’m learning to live with Lyme but not let Lyme become my life.
My message of hope to anyone out there is to believe in yourself, trust your instincts, and when in doubt, seek a second opinion. Educate yourself, be your own advocate and above all, don’t settle for a diagnosis you know in your heart is not right.
I have now been off all Lyme meds since April 2009. I’ve celebrated my 45th birthday. My one wish for 2010 is to train for a marathon to raise awareness of long-term Lyme Disease, and how the effects can be managed by long-term treatment.
I GOT IN! I’ll be running in the New York City Marathon, November 7, 2010 to raise awareness about long term Lyme Disease. I have never run more than ten miles in my life, so this should be exciting, but someone has to do it!
Update, November 2010
I DID IT! Follow me on Twitter http://www.twitter.com/lymerunner or http://www.lymerunner.com/ for more details of my marathon experience.
Angela Coulombe, Maine