In April of 1998 I unveiled my Lupus Awareness Homepage in hopes of informing as many people as possible about Lupus and I had great hopes that research would find a cure. It was all I had left to give to my friends in the Lupus community. We all were suffering and not enough people knew what Lupus was. I give thanks to my girlfriends in my Lupus support group online, as they have been with me since the beginning, before the launch of my first website. They have seen me through the worst of times and the best of times. We have been through sickness and health, shared the joys of births, and the heartache of death. Marlene, Alex, Barb, Deb, Jacqueline, Jeanette, Judy, Melanie and Sammie, it has been over eight years since we first met online, and we've been through everything imaginable together. I would also like to give thanks and special mention to one of the most important people on my health care team. Fernanda Civitella, my pharmacist. You have have been the best, you were always there to help me and supported me throughout hundreds of drug changes. I will be grateful for your help always. To all of my online friends, my at home friends...God Bless You All.....
In June 1998 I fractured my vertebrae while lifting hand weights in physical therapy. The osteoporosis from years of prednisone had taken it's toll. I was now hurting everywhere, and was becoming less mobile day by day. What a mess. I could no longer live in the apartment we had called home for the past 20 years. I needed a home that was accessible, and the only option was to move me. My parents were worried that a move to another rental would be too hard to guarantee the adaptations that I would need, so they bought us a house in the same neighborhood we had always loved. The children would not have to change schools, friends, or their support systems. We were only moving five blocks away.
In January 1999, I was now braced from head to toe. I was in constant pain severe pain. Had very limited mobility, and needed help every day. Either by my children, or from our local community health department. A wonderful home care giver would come in daily to give me my bath, wash my hair, and prepare meals for us. We were also hooked up with services to have someone come in and clean the house. My Occupational Therapist began the process to have my home adapted to my needs. The wait for the adaptations was three years, so in the meantime, dear friends built ramps, widened doors, and helped where they could.
One day when I was full of despair, my childhood friend Greg says, "Kath, I have this friend, Dr. Scrase who is a Chiropractor. PLEASE come and see him with me.!" "You've tried everything else, drugs, therapies, etc. What have you got to lose?" I had much faith in Greg's judgment, so I did go with him to meet Dr. Christopher Scrase. After a thorough examination, x-rays, and complete medical history, Dr. Scrase said that he thought that he would be able to help me regain some of the mobility that I had lost. He did not know how much, but I felt confident that I was in the right place, and was eager for him to begin my treatments. I began seeing Dr. Scrase almost every day for awhile. Then it was three times a week for a couple of years. First I regained the mobility in my neck. Then my arms. Bit by bit I was able to remove the braces and move my body with less pain. The corrections - adjustments he was doing to my spine was the secret we had unlocked to get the right healing messages to my body. I was improving slowly. Soon I was able to cut down on some of the medications I was taking. It wasn't always easy getting there. I would wake up, my homecare nurse would come and bath me and brace me, and dress me. In the winter it was added snowsuits. The only way for me to get to Dr. Scrase was to travel the 5km each way by electric wheelchair. No matter what the weather. Even in snow, and ice. It was that important to me to keep trying, as every teeny little bit of mobility I got gave me hope for the future, and I wasn't giving up on that. We nicknamed my wheelchair the Forestmobile. It had four wheel drive, power brake and power steering. It was even equipped with tail lights for night driving. I put a LOT of mileage on that chair.
There were some very sad days at the beginning of my first year traveling back and forth to Chris. Just after I moved into my home, the following April my Daddy died. His passing left a whole so big in my heart, I often thought it would never close. Just a few months after that my best friend Sue died suddenly at the age of 36. She left behind three beautiful children. They moved to their fathers house in another province, and I missed them dearly. My emotional wounds from these two great losses in my life, left me afraid, lonely, and extremely stressed. So the twelve months following were the toughest I think. It was faith that got me through those long months. One day at a time.
By the summer of 2000 I was getting better for sure. Still making my trips back and forth to Dr. Scrase and Dr. Bernstein regularly, I was constantly showing signs of improvement. Sue's children came back for the summer and we healed together. It was a wonderful summer I'll never forget. There were many tears, lots of laughter, a ton of love, and new memories to carry us forward. At the end of that summer, the children returned out west to live with their father, and I was once again left with that feeling of loneliness.
But I was much healthier by then. I was still using my wheelchair, and still had my braces on my legs, and back, but had faith that I was still improving. One cold dark winter day at the end of 2000, I was watching the Oprah Winfrey show. I had watched hundreds of her shows in the past, but none of them had the impact that this one did. It was how to live your best life. Dr. Phil was there and he was talking about the life laws and how we teach people how to treat us. And if you are unhappy, you have a choice, you can stay that way, or you can find a way to change it. I knew what I was missing in my life. I had two beautiful daughters, but I was missing adult companionship. I have always been a people person, and wanted somebody to share my life with. I wanted to conquer my fear that I was not *good enough* or *deserving enough* to meet and date men because of my illness. I was who I was, first of all a human being with feelings, and hopes and dreams. I was a mother, daughter, sister, etc. And I just happened to have Lupus. And always will have. So I have to learn to live with this chronic illness, and not *be* the illness. I mustered up all the strength and courage that I had, and put a profile up on web personals. I wasn't out in the *real* world yet, as most of my friends were online. So I thought I'd do what I knew worked for me. That was to make friends online, and continue the friendships offline. The first day I logged on with my polished profile and photo, within hours I was already receiving emails, and messages from people who were interested in communicating with me. I know there are a lot of horror stories out there of people getting into trouble meeting people on the internet, but I had had nothing but honest, family oriented, caring people that wanted to meet me. This is where the story gets really good!!!
As soon as I logged on I received an instant message from "secret identity 5235". Right away we discovered that we shared a love for the forest and all the beauty that it holds. We both had children, and we had both been divorced. I think it was our love for God's miracles that hooked us, but in no time at all we were chatting away as if we had known each other forever. It was so much fun. There were other dates that I had met online those first few months. All of them were kind, caring and considerate. I was so lucky to be blessed with such wonderful new people to make my life even richer than it was. I enjoyed so much all the times we spent together, and cherish the knowledge that there are people who care about you first, and disabilities second. It was a lesson I was honored to learn.
So, back to Mr. "secret identity 5235"! In no time at all I had found out that his name was André Bergeron, he was a stock broker and lived only 15 km away. He was very charming, but was not as used to *chatting* online as I was. Also English was his second language, so it was more difficult for him to type than speak. So after just a couple of days of emailing and chatting, he asked if he could call me. I was uncertain, but new that this was the road I had chosen for myself. To build a new life, and I had to start somewhere. I would never know if I didn't try. I said yes, and later that evening I received a call and could now put a voice to that lovely face and words I had only read. André was quite the charmer, and I felt myself being swept off my feet from the very beginning. To ensure that I wasn't just falling for the *first* guy I met online, I did date other people for the first six months, but it was clear to me that André had completely stolen my heart. A week after our 'phone' dates, we were to meet in person. He knew that I was in a wheelchair, and I had giving him my website address for him to go and read, so that there would be no surprises about my abilities and how Lupus had affected my life. He arrived to take me out to dinner, in a snow storm. He managed to get the chair apart, into the trunk of his car, and back together again at the restaurant. He passed with flying colors. Could this be real. Was I really out in the *real* world dating again! It was a wonderful evening that I will cherish forever. What André did not know until one year later was, that just incase the date did prove to be a disaster, I had friends staked out at the same restaurant, who 'pretended' to bump into me and say "Hello"! I was being as safe as possible. Our relationship just blossomed from there, as we got to know each other, our hopes and dreams for the future, and each other's families over the months, we were falling deeply in love. Six months later, André and I began living together, and my life began changing dramatically. There were a lot of blood, sweat and tears to get me where I am today, but he has been my rock throughout the whole ordeal. He became a member of my health team. He saw me learn to use my body all over again, as I was still gradually getting better with the help of Dr. Scrase, and Dr. Bernstein, it was slow, but it was a mountain I was so eager to climb. He even learned to give my my B12 shots. :0)
By May 2002 I was out of my braces and walking with aids. I had learned to drive a car again (with hand controls), and had my freedom back. I was able to be an active part of this family once again. My medications were being tapered and I felt stronger every day. I was still plagued with chronic fatigue, but I was in less pain and more mobile than I had been in for years.
May 10, 2002. A blessing in our family. Isaac Anthony Sabourin Ekins was born healthy. Cindy and Marc were the proud parents of a little boy, and I was the proudest Nanny in the world. This was our year of miracles. My little angel filled my life with such joy, that I knew now, more than ever I couldn't give up. I would have to work extra hard at my therapy, and treatments, to make sure he would have the best I could offer him. Unconditional love and support. He was my little angel...little did he know how much his little smiles, and giggles would make my worst days feel like the best. Isaac, sweetie, watching our world through your eyes... makes me believe that we will one day have world peace, wipe out diseases, and all live as one happy family. I know that is a dream our children have the power to make come true. I've watched your first steps, and your first everything...and I am so proud of you!
Isaac, the first few months you were born my strength grew as you grew. Lifting you every day was wonderful therapy for me. You helped build up my muscles and my spirit. I was able to hold you the day you were born, carry you as you grew, and am still able to pick you up and dance with you in my arms. Grandpa-pa was proud as I retold my "Isaac" stories each and every day. More miracles. Thank You God!
November 2002. Dr. Scrase sees that I have improved enough to start some serious physical therapy. I was so excited. I began immediately with my Physical Therapy Sports Specialist, Melanie Scrase. The last time I had seen Melanie for therapy, she was at my house teaching me how to roll over in my bed without hurting myself. She was surprised to see me doing so well, and right away she had me working on strength and stability. It was NOT easy! But it was necessary if I was to continue to move forward. And that was all I wanted, was to do my best on any given day. We started doing exercises with my new "Swiss exercise ball". It was fun as much as work. But I started to see improvements fast. I had spent so many years braced and in my chair that my body forgot how to work. We had to retrain it. That is a process that might take me years, but we take in one day at a time. After all, it took me years to become that disabled, I would need lots of patience to endure the road back. Melanie had to constantly warn me not to go TOO FAST. That was a little hard....I'm not a very patient person.
I was soon able to stop taking the morphine, and reduce the dosages in many more of my drugs. We were still moving forward, one baby step at a time. My whole health team was very happy with the progress we were making. It was almost miraculous. I was still having some serious problems with memory and cognitive function, and my OT was a big help in that area. So much to learn and relearn. It took me an average of two hours a day in therapy just to stay mobile for the day. And that was on my good days. I still have days where I cannot get out of bed, but they are few and far between.
With the right medical team, and all the love and support of all of my friends and family, I was heading into remission. It was and still is very difficult, but with lots of work, I feel better. I can still not go anywhere near fluorescent lights as they still make me flare. It is an important trigger that I must avoid at all costs. I still must do my exercises every day. I am still taking some medications, but they have been drastically reduced since 1998. I have relapses when my lungs do not feel like co-operating, but Dr. Bernstein is right on top of it, and we stop little flares from becoming big ones. Although I still suffer from the chronic fatigue that comes with Lupus, I feel more healthy than I have in 25 years.
This past winter and summer saw some of the best days of my life. André brought Melanie and I to Disney World (yes I got to meet Pooh in person.) and I went on ALL of the rides, roller coasters, everything. I walked around the whole park, and when I got to excited to see something, I ran. It was a real dream come true. I learned archery well enough that I have my own bow. We went on a sleigh ride with my nephews. Isaac was Baptized in January and then in May, Isaac celebrated is first birthday, and I celebrated with him my first year of so many of my own *firsts*!. I learned to ride a mountain bike. I went horseback riding. (the horse walked very slowly, but hey it was good for me!) I swam. I walked for exercise. I joined Yoga, and Pilate's. My body liked all the stretching and relaxation after all the hard therapy. I hiked though the forest. I canoed. I walked the dogs on my own two feet. I was able to spend days with the children doing things I could have only dreamed of. I pushed my grandson in his stroller, and pushed him on the swings at the park. I tried out water slides! What fun!! I drove our car. I could drive Mel to work. Erica and Joey came back for a visit from out west. They had never seen me walking without braces. Their happiness for me brought me to tears. If only their Mom could have been there to see all of this. I know she is watching and protecting me from above. André and I went to visit animal farms, the Ecomuseum, Parc Safari with the grandchildren. I even went on the amusement rides with seven year old Alex. I tired HIM out! <G> I helped with moving Cindy and Annie into their new homes, as well as my new sister-in-law. I helped paint our home. I worked in our garden. I babysat the little ones. I think if I sit here long enough, the list will be endless. None of this I could do five years ago. For all my dearest friends who sent me cards of encouragement to NEVER GIVE UP - you are with me to share in these dreams come true.
Then the best of all dreams came true. On August 30th, 2003 André and I were married. We held the celebration of our love here at home, with our families to share in our happiness. It was a fairy tale wedding, with a fairy tale ending, and together we now begin a whole new life, and new journey. We between us have four beautiful girls, Mireille, Annie, Cynthia and Melanie, and four beautiful grandchildren, Marilou, Sophie, Alex and Isaac.. Cindy and Marc have their wedding planned for next June, and we will join them in celebrating commitment for their love for each other. I love my new sisters in law and brother in law. They have been wonderful to me since the very first day I met them.
And finally, this past September 2003, I joined my first ever aerobics class at our local community center. It is gentle aerobics, but being a part of that class has boosted my self esteem and hopes for tomorrow even higher. I had a bit of difficulty with the chorography at first, but a few months later I'm starting to catch on. My instructor, Wendy, is a sweetheart, and we all love her.
In Oct. I was ill after a virus and a dose of UV from fluorescent lights that I didn't notice until it was too late. It affected my joints, my lungs, and my energy level. But after a 10 day pulse of prednisone, and a few extra asthma meds, I was improving again. It was just a little bump in the road. I still require at least two hours of therapy/exercise a day to keep me on my feet, but the payoff is worth every ounce of sweat and effort.
*Update* - In January 2004 I started working full time with André in a securities firm as Office Manager and Receptionist. I don't know for how long yet, as I am taking it one day at a time, and seeing how my health goes. Right now I am working 40+hrs a week. I am very much enjoying it every day. Fatigue is a problem so I just go to bed really early. I still require almost 2hrs of exercises every day, and must be up at 5:30 a.m. to make sure that I can fit them in before I leave.
Update September 2004: I have had a few flares since I began work, and we treated them with prednisone, and usually I bounce back. It is now September, and I am looking to cut back on my hours. Fatigue is really becoming a problem, which in turn interferes with the strength that I have to keep up with my therapy. One Day At A Time.
The legacy that I want to leave to my children and grandchildren is to try your very best each and every minute of every day, to never ever give up, even if you think it is hopeless and to always, ……always………have faith, and live your best life and to NEVER say NEVER, because miracles really do happen. You've all witnessed that in me.
When you have faith, anything is possible! In all times His love is ours to share….
*Love* & *Light*
Katherine Kilcullen-Bergeron aka Forestgreen
*Faith Is The Light That Leads Us Through The Darkness*
Index /Forestgreen Living With Lupus//Montreal Gazette Story 1998/Montreal Gazette Story 1999 /My Miracles/My Photo Journey - My Many Faces of Lupus/My Strength - My Family/ Comfort and Hope/Lupus Support and Other Health Links
Graphic at the top of the page was made by my dear friend, Rainbow Gypsy. Her site is www.rainbowtravellers.com.
Thanks for all the support over the years Sassy.