Have you ever heard the Jean Kerr quote ‘if you can keep your head when all about are losing theirs, it's just possible that you haven't grasped the situation.’ Whilst this is an obvious pun on the Kipling poem it is also a fairly accurate reflection of how I am feeling this week. I am usually a very private person but since starting this blog obviously my illness has become public knowledge. Those friends who knew I was ill probably had no clue how bad it was and a lot of friends didn’t even know I was ill, this is entirely down to me not telling people. I have been truly touched by people reaching out to me to congratulate me on my blog and to share their own story. This week I have had a number of friends contact me to see how I am and how I am coping my stock answer is - I am fine, how are you? However sometimes it brings it home to me how serious my illness is, particularly when my husband sums up what’s going on with the same friends as – waiting for the inevitable heart attack, stroke or life threatening arrhythmia and hoping he is around at the time to deal with. I like to think of this as waiting for god, as it reminds me of a TV sitcom from many years ago of the same name with Stephanie Cole and Graham Crowden and set in a retirement home. Maybe I am becoming a cranky old lady :-).
My husband however is a worrier, but then he has a far better insight into the medical world than I. I however do not tend to worry though I may disagree with that statement at 4am whilst I am lying awake listening to the sound of my pounding heart. It got me thinking that I am a little bit blasé about the situation, I under play everything for fear of not being believed. My shoulder is a great example of that, I hadn’t bother to mention it for a long time and when I finally did at the first appointment the shoulder orthopedic surgeon suggested that it will probably be a physio route first before any surgery. One look at my MRI changed that to you need surgery to fix it and not just a simple surgery they are doing 4 different surgeries in one. For the medical bods amongst you, in January I will be having a, Arthroscopic stabilisation with a HAGL repair, capsular plication and ACJ excision. Once that is done we will look at the other shoulder. This is now two major joint injuries that have been found that would usually be associated with significant trauma, when I have had no trauma at all to the areas because lets face it with my dodgy heart I have been resting for the past 16 months.
Maybe I try and concentrate on the things that I have control over, which at the moment is very little, I certainly focus on risk mitigation. Which brings us nicely to what next week has in store for me, firstly the picture is 1 weeks’ worth of my tablets that 126 in total, not including pain killers or GTN. I have 3 hospital appointments next week, they are orthopedic (hip), cardiologist and pain management consultants. Orthopedic appointments are so easy in comparison, do a scan of the area, is it a mechanical problem? Yes = surgery, no = physio. Obviously it is not really quite that simple but they are certainly a lot easier than the other appointments which are trial and error and a lot of keeping my fingers crossed. The pain management appointment is to tell my doctor that the stellate ganglion block I had on my birthday didn’t work and to see if it is worth progressing to a spinal cord stimulator or if that option is now off the table. I am also hoping to discuss the underlying condition and hopeful that we may finally have some answers.
The cardio appointment will be a check up on my heart, probably an echo and a discussion to see if there is any other options we can try. The Prinzmetal’s is getting worse and the only way to mitigate against the really dangerous side effects, apart from keeping my fingers crossed, is an internal cardiac defibrillator, which we did speak about at my last appointment but from what the cardiologist said last time I don’t think this is an option. So where does that leave us, my poor husband worrying enough for both us, getting our hopes up for answers (yet again), that we might not get and generally waiting for god.