You know that overwhelming feeling when you know the tears are coming but no matter how much you bite your bottom lift the tap turns on and you are away. Today is one of those days. It is a decade since my diagnosis of RA became a reality and I have received my latest follow up letter from the hospital and the myriad of tests we have had over the last 12 months. There are another few lines added to my growing list of health conditions to overcome.
I have been diagnosed with oligoarticular arthritis in my wrists and knees, bilateral facet arthropathy in my spine and Osteopaenia (the early stages of osteoporosis) and……….
My RA is in a flare, and we are in another major med change.
My Asthma had been uncontrolled so I am doing tests with the Respiratory department. Thanks to all the meds my allergies are also flared. I have been asked to consider treatments for my Endo so am back on the poke and prod list with our gynaecologist. I have lost my taste and smell and we are trying to work out if this is a side effect of my new meds or something else.
This 30seconds it just all feels overwhelming and like I am in a bad dream….. my rational brain says it will pass and we are only given what we can handle….. while my irrational brain wants to hang out in my pjs and give the world the tall middle finger!
On a positive my chest X Ray was clear, my CRP is the lowest it has ever been and I am sleeping through the night. Before I was unwell I was definitely a comfort eater so my own mind chatter is working overtimein positivity mode, with meditations and stopping for quiet time so that I don’t head completely into the depths of waging war on myself and eating everything in sight – love prednisone!! Each day I am out of wheelchair is good, each day I am off crutches is great. I can do this!!
Sunday was our team challenge day – I had put it off as I was too unwell last week and I had set my own goal to get back in the pool by the end of the 20 Weeks. It took a bit of planning but it was a success! I was able to get into the pool for the first time in months – thanks to some pretty awesome antihistamines, a fair bit of steroids, a tonne of menthol cream for after and a big dose of courage and a huge dollop of I CAN! I was able to walk and then flutterboard, inspired by one of my LeapStars who hadn’t really been back in a pool since her brain tumour was enough for me to dig deep too. WOW it felt good – sadly my shoulder and back didn’t want to swim but I got to walk and take part, I hung out at the lane ends and loved every minute of the faces of my LeapStars as they were overcoming their challenges… It was an amazing day for me to be involved in. A sprinkle of happiness in a stressful time! Encouraging and watching my LeapStars and their LittleLittleLeapStars was great soul medicine and gives me strength to get me through this week.
So as I head into the hospital for another round of my new wonder drug, I know I am super supported! One of my LeapStars has burnt the most wonderful opera CD and I lent me a new book, others have offered to keep me company, take me to the appointments. It is so so lovely. Riwai has the time off so I will take my new cuddly toy and my mohair and kick back and reflect on a decade of what I have learnt from having all these challenges in my life. I will remember without them I would never have ended up in my wonderful and rewarding career and business, and that everyday I am surrounded with people who accomplish so much more than they ever thought was possible.
All of them help keep my own dreams alive and have helped me endure this horrible treatment. My wish is to keep working with them all for at another decade at least stays alive! …. while closer to home my wish and goal is simply to to be able to walk around my own block and feel connected to my body, if I can do that I can aim to walk up our local stairs (250 odd) unaided without stopping, and feel a sense of achievement and enjoy the view….and of course a girl has to dream big so I am not giving up that one day I may even get back on my bike without pain and feel the wind whistle through my helmet on a downhill sprint. That’s better the tears have stopped and the sun has come out – time for lunch and a lemon and ginger tea – writing always makes me feel better. Smiles and Hugs and keep dreaming, wishing and doing what you love!
You are amazing, inspiring, strong, courageous. I’m grateful to know you. Thinking of you and sending you buckets of love and strength to help you through the tough days. xxx