My Story....(Part 2)
Six weeks post-op I reviewed with the surgeon. He suggested I return to the hand therapist to get my hands working again, at this point he was surprised to see my function was still limited in some ways - fortunately the nervy pains had gone and my sleep had been much better. I saw the Hand therapist over a few months and my hands still weren’t making anymore improvement. After all I had been through I was beginning to think this was my destiny and that I’d need to adapt to a life where I didn’t have full and normal use of my hands - the thought wasn’t nice but I was beginning to wonder ...!
The Hand therapist soon knew something wasn’t quite right and referred me for ultrasounds on my hands. Fortunately I didn’t have to wait long for this appointment and it confirmed that I had tendonitis in both hands - this was the reason I still couldn’t make a fist or straighten and press my hands together in prayer like fashion! So back to the hand therapist for another round of exercises and funny little finger stretches. A new diagnosis was new hope, new hope that there was a solution!
Four months on from my CT surgery and I really hadn’t made much progress. I was so frustrated and getting to my wits end with it all. What was wrong with me? Why was my body not healing? And again ‘is this my destiny?’. Once again hope stepped in, I knew there would be a way through. I was referred back to the Orthopaedic surgeon who wanted to run a few bloods. He asked about pain in other areas of my body, in particular bilateral pains? I told him about the unexplained pain in both my feet that I’d had for some time, the pain that bit rather hard when I took my first few steps out of bed in the morning and the same pain that had stopped me wearing high heeled shoes. He suggested Rheumatoid Arthritis. It would have never occurred to me. Not my destiny! I had the blood tests as suggested and returned to see the doctor. I’ll never forget 17th November 2017. Over a year of pain and frustration, multiple diagnosis that hadn’t been resolved and then the news “You have sero-positive Rheumatoid Arthritis!”
The day I got the RA diagnosis I recall feeling stunned, shocked, bewildered and relieved in a strange sense. Relieved that I finally had an answer - albeit a serious one! I got in the car and cried all the way home. I cried for the past 14 months of bodily limitations, pain and medical interventions. I cried for the 14 months of challenges that my husband and children had faced with my woes. I cried for the life that I knew could change so dramatically with this new diagnosis and the typical path of the disease. I shared this news with family and close friends and grieved for a week or so. The horror of the diagnosis truly set in when I recalled patients in my care with RA and the debilitating effects it has had on their lives. The medical literature supported my horror with suggestions that ‘after 5 years it is likely that you will not be able to continue full-time work’ and ‘RA is degenerative and unforgiving’.
While I was in this ‘grieving’ phase as I referred to it I never lost hope. It felt like hope was sitting in the depths of my being somewhere spurring me to keep going and to find a way through.
I was referred to a Rheumatologist, the wait to see him was a few months so I knew I had to start making some changes in the time until then. Overnight I made some drastic dietary changes - changes that my knowledge of nutrition, gut health and inflammation told me were good places to start. So out went coffee (the morning drink I enjoyed as a daily ritual with my husband), out went wine (I knew It would be missed but it wasn’t the end of the world - I had healing to do), I also cut Gluten, Dairy and Sugar. A few weeks later I gave up eggs as well. This was a tough time, a time that made me very quickly realise how much our lives and the joy in our lives revolves around the food we eat!
I researched lots of different healing diets and came up with The Wahls protocol and Autoimmune protocol, both seemed achievable and the testimonials from those who had followed them were great. I hadn’t finished reading Terry Wahl’s book before I was already following her guidelines for healing. I continued to be dairy, gluten, egg and sugar free and focused on increasing my good fats such as avocado and coconut cream. I followed this quite well for around 3 months waiting for the results that I had read about - it seemed this protocol wasn’t suited to my healing.
My first visit to the Rheumatologist was an interesting chapter in my healing journey. I still had hope. I knew deep down that I would be able to healing with a nutritional focus one way or another - I just had to find the right path for me. I also knew that I wasn’t keen to start taking medication for RA, at this point in time I felt I had a little more time up my sleeve. The Rheumatologist did a thorough examination of my joints and advised me that I had a lot of inflammation but at that point in time no joint damage. My hands, knees and feet were the worst parts affected by RA inflammation initially. The doctor wanted to start me on steroids and DMARDs (Disease modifying anti-rheumatic drugs). When I asked about the side effects of these drugs he told me I’d have a ‘bad day’ each week on the day I took them, a day where I wouldn’t feel so good and would need to plan to be at home not doing to much. I think that just about sealed the deal - I had to much in my life to give up a day each week to feel rotten, hope told me there was another way! I told him of the dietary interventions that I was making and that I had hoped to continue this for a little longer before making a decision about drug therapy. Despite his beliefs about the disease process and my prognosis the doctor said he’d see me again in 6 months - if not beforehand if things made a change for the worst.
I had brought myself some more time, more time to do things my way, the way that felt like the best option for me. It’s important to note that despite my determination to stay off the drugs I knew deep down that there was a point where (If I reached it) I would use drugs as an intervention.
I booked myself into a Juice Fasting Retreat. I already had experience juicing and knew the value of using this to cleanse and nourish the body. So I had 5 days away from my family with a group of around 8 others fasting and drinking only freshly pressed fruit and vegetable juices. This was an empowering experience for me. I for one had a holiday all by myself with some complete strangers, but also learnt about yoga and meditation through daily guided sessions and got to experience other healing therapies such as massage, sauna, oxygen therapy and much more. After 2 days I didn’t even think about food, the juice was enough and my body felt fine. I did a lot of reflection over this time and felt encouraged talking to others on the retreat and learning more about healing. I came home after this lovely wee health break and eased back into the Wahls protocol again. While I didn’t come home from the retreat pain-free restarting the Wahls protocol showed me that that wasn’t the path for my body, my inflammation and pain got worse……!
Physically I was noticing some decline. I took a good half hour to get moving in the mornings. Getting out of bed I would creep around uncomfortably on sore feet, having a hot shower allowed me to thaw out somewhat and get moving. Early morning tasks such as spreading toast or cutting up fruit for lunches were a challenge, my joints constantly reminded me of my diagnosis. I recall feeling concerned for my ability to move in a hurry if there was an emergency or if I needed to assist my children when they needed me. I could no longer run due to the pain and swelling in my knees, I was really slowing down - at aged nearly 33 this was not going to be my future!
Part 3 to follow....