Blogging Forward…

I wasn’t sure what to expect when I started writing this blog over four years ago. Putting one’s personal details, thoughts and opinions out there has its risks, but as it turns out, also has had many delightful outcomes. The blog has brought me new friends, a great deal of support and many smiles along the way. For these positive outcomes, I’m very grateful.

There was also a downside to going public. I was dealing with a situation with at least one reader whose questionable intentions were distressing to me (to the point that I seriously considered no longer writing this blog).

The negative consequences were keeping me from being more forthright on the blog, I wasn’t happy that details of my declining health and personal circumstances were being perused for reasons other than concern for my welfare of that of my daughter, or for education on Erdheim-Chester Disease. Some good friends know what I’m referring to, it’s assumed that it’s a situation that won’t change no matter what I write here. I’ve addressed it privately, but don’t expect anything to change. I can’t keep anybody from visiting this blog unless I password protect it, but if as a reader you’re here only to pass on information to a party who has a financial interest in the timing my demise – well, that’s just really sad.

I want to thank two members of my palliative team in particular who, this this week reminded me of why I started this blog in the first place. It was to keep my friends informed of my health without repeating the same information over and over again – and over the last few months that’s exactly what I found myself doing again while I went into a “protective” mode. Many readers have also let me know that the blog has been helpful in dealing with their own serious illness, or that of a loved one. I’m honoured to know that my words might have brought comfort to others along the way.

So here’s the scoop. I’m not doing well. A few weeks ago I was diagnosed with congestive heart failure, causing significant additional breathing problems not eased by increasing the oxygen. Fluid has been building up in various areas of my body (lying on my back almost 100% of the time might give you an idea as to how gravity has been playing its part).

Daily medication “drains” the fluid for a few hours each morning. Not to be indelicate, but if you have an idea of the pain and discomfort involved for me in getting up to go to the bathroom every few hours – you can multiply it significantly when I require usually more than ten or fifteen bathroom visits in the space of two hours. By mid-afternoon I’m in so much pain that it wouldn’t take more than mere suggestion to agree to having my legs amputated.

The PSW visits are the worst. Hobbling around the corner to lie down while she changes the bed sheets are agony. One might suggest instead sitting up nearby for few minutes in a chair, but that’s even worse. Sitting up has me shaking so badly from weakness and pain that I end up near tears.

With my palliative team we’ve come to the decision that the pain management protocol was I going to try in hospital (mentioned in a post a month or so ago) is no longer in the cards, I’m simply too weak to travel there to give it a try. It was risky to begin with, but my declining health has further shut the door to that experiment.

We’ve declined the food delivery service, unfortunately my appetite and ability to swallow have both significantly diminished. The volunteers were so very kind in trying to prepare meals that might appeal to me, unfortunately little does these days. It’s easier to let Suzanna shop for herself, she’s a great cook and I get the benefit of the wonderful aromas.

The tables have turned on my sleeping habits as well. For the longest time it was standard to only get four or five hours of sleep, now I’m asleep far more than I’m awake in each twenty four hour period. The upside is that I have fewer hours now that I need to fill with mental stimulation, that was becoming quite a challenge with bone pain often succeeding at thwarting my attempts at mindful distraction.

This post isn’t meant to make anyone feel sorry for me, to me it’s righting a situation that has been out of whack for some months. This is what my days are like, it was time to stop pretending that it’s one wondrous and humour filled day after the next.

It was time to get back to representing things as they are. With that comes a hope that there is understanding as to why I’ve become quite lousy at returning emails and phone calls, why I’ve been cancelling a lot of visits lately. I’m feeling nothing less than miserable much of the time, and we’re now faced with tough decisions as to where we go from here.

Despite any negativity, it doesn’t for one second change the positive aspects that writing this blog for over four years has brought to me. Thank you for the support, concern and well wishes. I hold them dear.