We are John, Rebecca, and Hannah, and we are asking for some help.
In 2010 I (Rebecca) got sick, although at the time I didn’t know it would be the kind of sick that hangs around for eight years. I got acute chest pain after returning home from a trip to visit family. Doctors ruled out heart attack and blood clots, and sent me home with anti-inflammatory medication and a diagnosis of costochondritis and told me it should settle soon. I had severe chest pain with movement for 4 months and then, out of nowhere, it disappeared.
Life was back to normal for us thankfully, but only for a short time. A few months later I developed a range of persistent gastrointestinal symptoms. These were thoroughly investigated with no clear diagnosis. We were advised to try a range of dietary restrictions, which seemed to have some impact and my symptoms gradually improved.
Things were quite well until the fall of 2012 when I had a return of the severe chest pain, which also involved my right shoulder. This was significant. It forced me to seek a change in my job as I was no longer able to maintain the physical requirements of being a front line nurse because of the impact of the pain when I moved. Thankfully, I was able to find an office based position and continue working as a nurse. Slowly, I had to stop doing some of the things I loved, like running, because of the intensity of the pain. This was devastating for me as exercise and the outdoors has always been a means of stress relief. I sought out treatment right away. I saw a sports medicine specialist, a thoracic surgeon, 2 Rheumatologists, a Gastroenterologist, an internal medicine specialist and had extensive investigations. Imaging showed some changes and sclerosis to the bone in my chest and I was given the diagnosis of SAPHO (synovitis, acne, pustulosis, hyperostosis, osteitis) syndrome which is a rare “auto-inflammatory” condition with no clearly identified successful treatment plan. I tried numerous medications, none of which seemed to have any impact on the pain. It was becoming apparent that I was reaching the limitations of our medical system. Each specialist did their best to help, but I just continued to get sicker. I sought out other treatment modalities and professions such as naturopathy, physiotherapy, massage, craniosacral therapy, acupuncture, psychology, neurofeedback and mindfulness all of which had varying, but subtle positive impact on my condition. It was very much relapsing and remitting, with a relapse negatively impacting all aspects of my life and remissions allowing me to live life close to “normal.” It just became a part of who I was.
As the years passed I managed to find a way to cope which usually involved 2-5 appointments per week just to manage my pain and fatigue, and keep my function from declining. I had to decrease my work schedule and recreational activities to cope. I researched tirelessly, cleaned up my diet and environment and did everything that all of my health practitioners asked of me and just kept on going. As the years went on, so did the illness. Each flare became slightly more intense than the last and lasted just a little longer, impairing some physical capability or taking one away each time. It was easy to notice the physical impairments, but I would just regroup myself and find something different that I COULD do and keep moving forward. It was becoming more apparent that my illness was deciding how I was going to live my life. I would keep fighting.
We desperately wanted to have a family, but struggled with that as well. I had been told previously that there was little chance. With what I call some "Divine intervention,” we were able to conceive our beautiful daughter in November 2015. After the first 3 months of my pregnancy, all of my symptoms seemed to “melt away.” I felt the best I had in so many years. I thought that this gift of life had brought with it the gift of health. With that new found positivity and optimism I began to work on further addressing the psychological toll that having chronic disease had on me. I wanted a fresh start for all of us. There are no words to describe how much joy we felt when our daughter came into this world.
2 months after she was born I got sick again. It was bad. The pain was severe and now widespread from my head to my hips and the fatigue, coupled with the fact that I had a newborn baby, was debilitating. We were devastated. But, with our amazing daughter looking at the world through her clear blue eyes with wonder, we found a deep unwavering motivation to get to the bottom of this illness. I wanted to grow with her, run with her, play with her, and be right by her side through every up and down of life. We researched. I continued an unsustainable schedule of appointments to keep me going. All the while I kept getting sicker.
In the spring of 2017 we came across a docuseries mentioning the Institute of Functional Medicine at the Cleveland Clinic in the USA on autoimmune disease. We were prepared to go there to get some answers. It talked about being able to get to the “root cause” of mystery or autoimmune illness. Featured on this docuseries was a functional medicine practitioner located within hours of our home, so we made arrangements to see him. After a 3 hour initial appointment we had some insight and some new found hope. I was sent away with some investigations and a follow up plan. The irony in all of this was that this specialist was closing his practice the following month, but before he went we were given some clear instructions about a recommended treatment plan and told that he truly believed I would get my health back. We were prepared to do anything.
I was now losing my health faster than I could keep on top of it. I was scared, but also excited that we could get moving forward again. I had a 4 month wait to see the practitioner that was recommended to me. In that time my health continued to deteriorate. I was unable to return to work. I was barely functioning. Our family was forced into survival mode. I was in so much pain. My body wasn’t working, my brain wasn’t working and I was severely exhausted. I was worried for my husband and my daughter, so unbearably worriedI. I hit my “rock bottom” hard when I had to put my daughter in child care so I could rest. I couldn’t take care of her on my own anymore. This was the part that broke my heart and my spirit. The weight of that alone was almost too much to bear.
But still…I could not let MY illness dampen HER spirit. She was just starting out on her own journey in this amazing world. I made every moment count with her and I was ever present as her mom. I made her know that I WAS NOT giving up.
I am now 4 months into treatment and I have made some major progress. My pain has dramatically decreased, my energy has dramatically increased, and I am starting to get my vitality back…my “ME” back. I have a long road ahead, and still many health issues that need to be addressed, but I have a plan now, and it’s working, but I am told, and I believe that each thing needs to be addressed in order to make a full recovery. I have a chronic illness made up of layers and treating it means that we have to get through each one to get to the root. I still have layers to work through, but we are truly getting there, and I am hoping that I will be able to return to work soon.
For me the current areas of treatment are the treatment of stealth pathogens (a combination of bacteria and viruses damaging my body), removing heavy metals and detoxifying my body of other environmental contaminants, and addressing all of the imbalance in all my major body systems that have been so impaired by nearly 8 years of autoimmune illness. It requires seeing multiple practitioners such as private functional medicine doctors, naturopaths and others. Some of the treatments are not available in my area and I have to travel 3 hours from home, and sometimes have to be away for extended periods. Currently, this type of treatment would be considered “unconventional” by our current medical system and coming from a nursing background, I understand the amount of trust it takes to make a leap from a system I knew and trusted, to one I know nothing about, but I believe that the balance of these two systems is one of the keys to helping people get better. This is my lived experience.
This is where we are asking for your help. You see, none of these treatments are covered by our health care plan, nor was the private functional medicine practitioner that got us started on the road to recovery. They are expensive and require time, and the nature of this illness makes it extremely difficult to quantify both. I have learned that there is no “quick fix.” We have spent all of our savings on getting back my health and we have nothing left. Our families have been enormously supportive in every way, but even they are unable to help any further, and we can’t ask them to. It is profoundly difficult for us to ask for help, but we truly need it to go any further. Anything received will go towards medical expenses and treatments and repaying some of the debt that we have had to accumulate to pay for these costs.
Chronic illness is not for the faint of heart. It is a relentless test of the human body and spirit, too often suffered in silence. As my illness not been overtly visible, we have been able to keep our struggles with it to ourselves and to our very immediate family for all of these years, but this has not served us well especially when we ended up in crisis. Looking back it would have been nice to have a community to lift us up and help us rally forward. For me, I think I didn’t want to show vulnerability. I didn’t want to admit to myself or others that this illness was winning. I now believe that maybe our story will be able to shed some light for others in similar situations. This illness is not winning. I am 36 years old and I have so much life yet to live! We have an unwavering determination to beat this, and to move on to live every single second of our lives, in happiness and health, and with love and gratitude for this experience. We want to teach our daughter that there is nothing that the human spirit can’t adapt to, and grow to thrive stronger. We will pay this forward, and I have made it my mission to find a way help others in their quest to achieve optimal health, and to let them know that they are not alone, and that there truly is hope.
We will gladly answer any questions you have in regard to our campaign and truly appreciate you taking the time to read our story.
With sincere gratitude,