One month ago, I had pleasure to speak at a Parliamentary event on Integrated Medicine and Juvenile Rheumatoid Arthritis. It was an amazing day in so many ways…To be inside Parliament (sadly, no photos allowed…)..to be sharing our story…and most of all, to have the opportunity to inspire other mothers on similar journeys to me…I loved the whole experience.
While I was there, I met the editor of the British Homeopathic Magazine. He was interested in our story and my speech will be published here in the UK sometime in the next week or so. For those of you who are not homeopaths, here it is…. (If you missed my last post, you might want to read this.)
A MOTHER’S TALE (my speech as given in Parliament)
Isn’t it funny how some life choices lead us to the most unexpected places?
12 years ago, I moved to the UK with my work as a director in a large US company. My life was full and fast-paced. My work was fun and, I thought, challenging.
6 years ago I became a single mother when my daughter, Phoebe, was born. Sharing my life with my beautiful daughter was wonderful, but I was an ocean away from my family and things were far from easy. Little did I know but life was soon to become much, much harder for us both.
In 2011, inspired in part by my beautiful girl, I left the safety and security of my career to pursue my dream of becoming a portrait photographer. I knew this would be difficult, but I believed together we would make it. Setting up as a self-employed photographer inevitably meant life became tougher, especially financially. But none of this had prepared me for what was yet to come.
Two years ago, I sat with my daughter in a very plain, cream-coloured room and heard for the very first time the words “Juvenile Rheumatoid Arthritis”. Initially, I rejected these words out of hand –they couldn’t apply to us. But yes, in fact, they did! My little girl was three and half years old and diagnosed with a chronic disease.
Her left knee was swollen, and what had started as an intermittent limp, had become something more consistent. Over time, from May to September of that year, she had more and more difficulty walking, and often would wake crying in the morning. She would crawl to my room because she couldn’t walk, and my heart would break for her. Again and again.
My first response to that diagnosis was mixed. On the one hand, I was very much afraid for Phoebe and wanted to find out what modern medicine could offer. We started our medical journey with a general rheumatologist in our local hospital, who, when I didn’t want to inject her knee with steroids straight away, painted a very dark and dire picture. As a result of her words, I was fearfully focused on what the disease might do to my daughter and to her joints. We quickly transferred to a paediatric rheumatologist who listened to me, but who also painted an equally dismal picture. It seemed, according to the rheumatologist, there was no choice but to use some pretty heavy medication to treat my daughter.
My second response to the diagnosis was a determined one. I have always held a belief that my mind and my body together can heal. I have always believed that diet is crucially important. For myself, I only used drugs as the very last resort, mainly because I didn’t want their side-effects. Holistic medicine, such as homeopathy, kinesiology, osteopathy, Reiki, acupuncture, reflexology, had all helped both Phoebe and I in the past. And so to treat my daughter’s inflammation, I wanted holistic medicine to be the primary course of treatment, using conventional Western medicine only at those crucial times when my daughter absolutely needed it. I wanted to support and not suppress my daughter’s body, to give her immune system the time and space to right itself.
And so began our journey with an elimination diet (in the beginning, Phoebe had a very long list of food intolerances), with supplements, with homeopathy, with kinesiology and with osteopathy. Her treatment took into consideration her whole self. My healer worked and continues to work with Phoebe energetically, emotionally, structurally, chemically and nutritionally.
As many of you will know, healing through holistic medicine doesn’t happen overnight. And so in September of that year, when Phoebe’s knee was painful and not getting better, she received a steroid injection into the joint. About this time she was also diagnosed with Uveitis in both eyes, a serious condition associated with JRA which can lead to blindness. Things were getting worse. For although her knee had responded to the steroid injection, she soon after suffered another flare-up, this time in both knees with the uveitis continuing to affect both her eyes.
At each of our hospital check-ups, I was put under increasing pressure to treat Phoebe with Methotrexate (MTX), an anti-rheumatic drug that can have some very serious side-effects including hair loss, seizures, confusion, blurred or loss of vision and, weakness on one or both sides of the body. This was something I was – and am still – adamantly against using. I was told in no uncertain terms that with her presentation of symptoms the chances of remission without MTX were slim to none. I was told I was damaging my daughter. And on more than one occasion, the doctors reduced me to tears by the things they said.
A stubborn lady
Luckily for Phoebe, I can be one stubborn lady. I held my ground. And last June, more than a year after it started, the inflammation disappeared from Phoebe’s eyes and her knees. She remained inflammation-free for nine months. Two months ago, Phoebe’s symptoms returned. However, this time she’s not in pain and her mobility has been little affected. Thankfully, we work VERY closely with our homeopath-kinesiologist and Phoebe is now seen at Great Ormond Street Children’s hospital. But as the medical staff there will tell you, I continue to be as determined as ever to support her system in healing with minimal drug intervention.
That first year following Phoebe’s diagnosis was by far the hardest of my life. On top of the emotional strain of learning my daughter had a serious illness, I felt like I had to fight the system that was in place to support and heal her.
There were no easy answers to Phoebe’s condition from complementary and alternative medicine either. Thank goodness for the Internet! I spent hours researching and spoke to many different holistic therapists and doctors. Phoebe and I saw and spoke to people both here in the UK and in the US, before I found the team of carers that now work to support Phoebe today.
You may be wondering what all this cost me. The simple answer is – quite a bit. How could I afford this? Keep in mind that at the time I was in the second year of setting up my own business, had yet to make any money and was a single mother. And yet in my mind I knew I HAD to afford this.
In terms of both money and time Phoebe’s alternative care was and is expensive. Sometimes we have three or four doctor visits in one week, most of which I pay for. Our food bill has more than doubled because we now eat a primarily Paleo diet: lots and lots of organic vegetables and very high quality, organic meat and wild fish. Phoebe is taking lots of supplements too, which are also expensive. And every day, on top of being a single mom, on top of running my own business, I spend two to three hours in the kitchen cooking or making fresh juices and smoothies for Phoebe.
For me, this was simply a choice of priorities. Her health and my health come first. Holidays, clothes, eating out, all these things come second.
Is it easy? No!
Can it be done? Yes!
Do I believe Phoebe is healing? Undoubtedly, yes!
Anyone who knows me knows that I think of these last two years as a journey. As difficult as it has been, this has been a time for me of immense learning and a time that has presented me with many, many gifts. And I would like to share six of these gifts with all parents facing a diagnosis of JRA or any other autoimmune disease.
- Trust. Trust yourself. Trust your intuition, especially when it comes to you or your child. You are different from any other person. You know your child better than anyone else. You will know deep down when you are on the right path.
- What you think and what you say counts. I never say “my daughter has JRA”. I also don’t think of my daughter as sick. She is healing and I see her as whole and well. When she could not walk, I would visualise her running across the field. I would talk to her about the time when she would run. In fact even today, we often march around the park chanting: “My knees are better, my eyes are better, I’m inflammation free.” Silly but effective!
- What you eat matters. Period!
- There is no “one size fits all” in relation to your or your family’s health. What works to heal one patient will not automatically work to heal your child. The best thing you can do is to find a gifted and compassionate holistic healer, preferably one with training in multiple healing disciplines. And then find a rheumatologist and ophthalmologist who are sympathetic to your viewpoint. They may not agree with you. They may not understand your methods, but at least you can work together for your child.
- Be patient. Holistic medicine takes time. It took months if not years to knock my daughter’s immune system out of kilter. It is taking a similar amount of time to bring it back into balance.
- Make friends with your fear. Reading this you may think I’m supremely confident and secure in my beliefs. You may think I am without self-doubt when it comes to my decisions as a mother. But that is only because I work all the time on recognising, but not being driven by my fear.
Before I close, I would like to share these three wishes with you.
- Firstly, I wish for CHOICE. I wish our GPs and our consultants would present information and healing options to us. I wish there were a way that we could work together with our doctors to choose and create a healing treatment plan that utilises the best of Western medicine and holistic medicine in combination. I know other countries are doing this. Why can’t we?
- I wish we could approach healing with the WHOLE person in mind. As I teach yoga I know that tight hips are not just tight hips. To ease the tightness, the whole body must be worked. Often the mind must soften too. It is the same with autoimmune disease. In my experience, my daughter’s sore knee is not just a sore knee or a wayward immune system. Her issues can be healed but not without considering ALL of her.
- And lastly, I wish for more SUPPORT and CONNECTION. This has been a very lonely journey for me. Thank goodness for Facebook and the encouragement I received from my friends there. How grateful I am that I met Lauren Vaknine from the British Homeopathic Association, who supported me at a time when I felt very alone. How I wish there was a way to better connect like-minded parents and patients together.
I hope mine and Phoebe’s story offers hope and encouragement to someone embarking on their own healing journey. Namaste!
Here, after the event, with Lauren Vaknine who was instrumental in putting together the entire day.
Denise is a single mother with a passion for healthy living, eating and moving. She is yoga teacher and a family portrait photographer who leverages her American roots and makes her home in Windsor, UK. You can find more of Denise’s work and her story on www.denisebalyozphotography.com and www.theukmama.com