It’s September, must be time to get back to work… My life has always been ruled by the school calendar. Not only did I spend my entire childhood at school, plus 6 years of post secondary education, my profession was always in schools. Of course, even though I’m not working as an SLP, I have two kids, and September is still the real beginning of the year.
I wrote very little over the summer. Not only was I extremely ill, I didn’t feel much like writing. I love writing, but it’s so much harder than it used to be. I was uninspired to write, but now that school has started, I’m ready to get to it! Having the time and energy is still an issue, but I have so many ideas running around in my brain, I’ve got to de-clutter in there.
Health wise, I’m not awful. I’ve recovered from my bout of sepsis, and even managed a short trip to Toronto. I felt quite good a few weeks ago after an iron infusion, but they have since cancelled the following two, saying that their service now thinks that I am too complex for them to handle. They go in courses of three, and they cancelled the second one an hour before my appointment. It takes six months to get another set of three arranged. It is one of very few things that has an immediate dramatic effect on my MCAS (iron is a mast cell stabilizer), and my function (I’m badly anemic- close to needing a blood transfusion). I was really not impressed. It’s utterly ridiculous that something as simple (and cheap, and effective) as an iron infusion should be so difficult! I’ve had seven infusions there before, but suddenly I’m too complex… at least I know not to take it personally, I know a few others who used to go to the same pocation for infusions who have been unceremoniously turfed.
I have a newfound footing to fight for what I need. It’s a long story, but basically, I was treated properly at an ER in Toronto. The contrast makes me feel almost physically ill when I think about it. It has highlighted the level of abuse that I have been subject to, as well as giving me the confidence of a ‘fall back position’ if things go haywire here. (It’s far, but I can get to Toronto really quickly if need be, there are flights every hour, and it’s under five hours flight). I will not tolerate further abuse, and I have followed through on some of the situations that arose in June. Local docs seem to be getting the message, and several things that I have been waiting for for years are suddenly getting done, but they feel like bribes. (There are two programs, one I have been waiting four years for, the other two and a half years. I’m sure it’s a coincidence that I got a spot in them on the same day, 24 hours after I sent a ‘fix this before I lose it’ email to my team of physicians. 🙄). I will not be backing off on previous complaints even if I am getting the care I need. I know that if I don’t, I will continue to be abused by the medical system. Trying to solve issues one incident at a time is not preventing it from happening again, and again, and again. I’m so far past done with this crap.
When all the supports are in place I’m fairly functional, but if the slightest thing shifts, it all crashes down. I know how well I can be (even if I’m only seeing glimpses right now) and I know that I can ‘do this’ if I have that goal in mind. I also know that our system is quite capable of treating people with MCAS appropriately; if it can be done in Ontario, it can be done here. The realistic possibility of actual improvement in my health care (and subsequently my function) is all I need to keep at it. And in the meantime, I’ve got some fun stuff to share, some rants begging to be unleashed, and some thoughts to explore.