Virginia Guindon's Story

What were the steps leading up to your diagnosis?

Lupus runs in my family. I started having symptoms when I was in junior high school – migraine headaches, fatigue, swollen lymph nodes and low-grade fevers. At that time the LE Prep test was all that the doctors were doing and mine kept coming up negative. Then in 1985 I became pregnant and a difficult pregnancy it was. I was 21 weeks pregnant, in a hospital on the verge of losing my baby boy. He was born 8 weeks early and spent a week in the NICU.

I never fully recovered and started having black outs. After seeing an endocrinologist and leaving the office with a prescription for Inderal LA and a pat-on-the-back, nothing-is-wrong diagnosis, I called the Lupus Foundation to find a rheumatologist. I explained my family history and that I didn't care how far I had to travel, I wanted the best doctor. With my test results from the endocrinologist in hand I met with my rheumatologist. She was fantastic, understanding, and listened intently about our family history.

Our family history trait is that we have everything to do with SLE but our markers don't show unless we are hospital bound. I couldn't get anyone to understand that part, they just dismissed it. So after 19 tubes of blood and a very lengthy office visit, I had the diagnosis. That was in 1987. I have had my fair share of fights with the wolf inside me through the years. At different times it has attacked my kidneys, lungs, spleen, joints, etc. This past December it made its way to my heart.

Who has been there for you? How?

My family. Without my family and their strength, I would not be the strong willed person I am today. We have all lived through the trials of other family members with lupus. Some family members have been lost to lupus and some of us are still fighting the fight. My husband is my biggest cheerleader, and also my watchdog. He knows me sometimes better than myself, when I need a pick-me-up or a finger waved at me letting me know it is time to rest.

What lifestyle changes have you needed to make?

I had to take a disability retirement after working with special education students for 15 years. That was one of the hardest things to accept. I became a Co-Chairperson for the Amster Butterfly Walk in Michigan and for many years we have raised between $25 and $30 thousand each year that we’ve held the walk. Every penny raised was donated to the Amster Lupus Fund at the University of Michigan Hospital for research. I love to garden and used to pat myself on the back for throwing that huge bag of dirt over my shoulder and walking across the yard with it. Now my lawn tractor has a trailer that has become my shoulder.

What accomplishment are you proud of?

I am proud that I spent so many years volunteering for the Amster Lupus Fund. I am proud that I am able to meet people and tell them about lupus. I am proud that I am a strong woman.

What's your advice to someone else living with Lupus?

Know your body and get a great rheumatologist. Don't ever settle. My doctor is a lupus research doctor and she is amazing. My cardiologist is very well studied in lupus and so is my neurologist. Find those types of doctors.

Is there anything else we should know?

Lupus is a word that has been in my vocabulary since I was a child. You see, lupus has never skipped a generation on my mom's side of the family. My grandfather died from complications of lupus, his daughters (my mother and her sisters) all have lupus. My mom, Patricia, was diagnosed when she was hit with a bout of Gillian Barre Syndrome. She is doing well now, and refuses to see a doctor. "I don't believe I have lupus," she says.

Pamela, my mother’s sister, had lupus to the full extent. Pam had been clinically dead six times in her lifetime, had one failing kidney left, an artificial heart valve, I could go on and on. Pam lost her fight with lupus in 2010. She was strong and will be missed. The baby sister of the three is Cynthia, who seems to do fairly well with her lupus. She is a very creative spirit, with a huge heart. She also lost a child who was 23 months old, due to Lupus like symptom/complications.

Then there is me, living with my lupus every day. I do the best I can, and I’m now on disability. My symptoms are migraines, fever, Raynauds, pleurisy, pericarditis, seizures, mouth sores, hair loss, memory loss, butterfly rash, joint and chest pains. I have had an occipital nerve tumour removed from the back of my head, and suffered through compartment syndrome (blood clots). In 2010 I was also diagnosed with mitochondrial myopathy in addition to my lupus. Apparently, it's just not enough to have lupus, but now I have to have something else on top of that.

It hasn't been pretty at times, but I make the best of it. I do not let it get the best of me, and I fight this thing all the way. Even with the handfuls of medication and the myopathy cocktail, I still forge on with a ton of will and any strength I have. This year there was a blessing – my lupus is officially in remission as of January. This is only the second time for me since the diagnosis many years ago.