Yesterday I found myself being schooled by a world renown rheumatologist in not looking back – amongst other things. I’ve had the good fortune of crossing paths with this amazing man several times in recent weeks and he has chosen to spend unhurried time with me to work with me on finding solutions. I’m really very honoured, it’s a rare thing to spend time with a medical consultant who sees the person and intuits much of what that person needs beyond the immediate issue.
Since having surgery I’ve developed sore joints and painful, numb hands impacting dexterity etc. After experimenting with a steroid injection and a MRI the upshot is I have inflammation in all of my joints, which is as a result of auto immune disease. My hands can be fixed apparently, so they’re in my mind as an inconvenience for the moment.
It would be so easy to lose my head right now. After a year battling against my own body, which insisted on destroying my colon, I had my colon out and I’m seven months on from that major surgery. I knew I would adapt to having an ileostomy and pick up the mantle of life once again. Surging forward, my heart was full of hope and excitement for a life grabbed back in defiance of the persistence of auto immune disease. It was a battle won, me victorious staring down the defeated disease that dared to try to take me down. Such was my mood.
This remains my attitude but instead of finding myself in that moment of liberation and jubilance I’m once again steeling myself to go into battle with my body. It seems this is my life now. The defective gene or whatever it is that allows bastard auto immune disease to take another stronghold is up for another fight and battle of wills.
So, for the moment I’ve decided to go my own way, see if I can find solutions of my own through diet, exercise and lifestyle. This is aways a good route but especially because right now what’s being suggested throws me to a place I don’t want to go.
The option, it seems, are to try to manage unmedicated for myself but if this doesn’t work I’m back into the world of biologics. I tried one such drug, Humira, before electing to have a colectomy and it didn’t work for me. There are other drugs to try through injections and infusions but I don’t want to entertain this right now. These are the very drugs that I rejected before and to find myself moving toward them again is something of an overwhelming thought. I’m guessing that it’s inevitable I will find myself back on them at some point but for now I’m not going there. Once on them that will be me for the rest of my life so I feel very strongly that I want to push back on that option for as long as possible.
So back to my lovely doc. He’s asked me to trust him, to let him put the pieces of the jigsaw together and to find the solutions for me. Never have I met such a genuinely caring and engaged consultant. In a rare moment of trust I have put myself in his hands and have taken his guidance to heart. If it wasn’t for him I would probably be raging and lost right now but instead I’ve decided to not look back and not look too far forward either. This is now, what’s gone is gone and I will always, as ever, make the most of the cards I’m dealt. I’m not sick or dying, not yet, I have a wonderful life and I intend to live it. Sure, I have to make some adjustments but doesn’t everyone at some point.
Right now I can’t train or cycle and that’s temporary so I’m making damn sure I’m doing all my physio and rehab exercises to get my body in the best possible condition. That’s all any of us can do right?! I intend to live this life to the full and bloody hell maybe even find someone special to share it with.
As pervasive as this disease wants to be I can match it with my determination and not be beaten. Today I feel very blessed and am looking ahead, face to the sun.
When in hospital I called my Ostomy Arnold. It was a nod to ‘I’ll be back’. But it’s not about going back to my old life, it never was, I just didn’t realise. It’s about adapting and finding a new adventure. So Arnold is no more. I have wondered before if my Ostomy deserved a different name and I’m feeling he’s more a Wilson these days, my partner in crime (a reference to Wilson in Castaway). I get the feeling my Ostomy will have a journey of names along the way. We’re in it together after all!
So no more looking back, it’s all about today and the next day. I’m good with that.
“Don’t look back, unless you plan on going that way..” unknown