I should have posted this sooner but I have been busy and tired.
The good news is that I am not going to die in the next couple of weeks and they didn’t find a fast acting tumor. So sorry to disappoint those who were hoping for that outcome. I appreciated the emails.
I did my tests at RUH, was pumped full of radioactive chemicals (sadly no super powers came from it) and was scanned, scanned in the exact same way, then I was scanned again. Finally I was scanned the fourth time. I am assuming they were looking for different things.
I did find some time to read my file and it was alarmingly full of errors. It mentions two ulcers and there is only one. It mentions my left leg and it is my right leg that the infection is part of. It doesn’t surprise me. There has been sloppy mistakes made constantly in how forms and things have been handled.
What’s worse is the amount of nurses and technicians who say, “It happens all of the time”. That doesn’t make me feel comforted.
So basically after all of those tests (and about $50 in RUH parking fees – tell me again why RUH parkade is the MOST EXPENSIVE IN SASKATOON? It’s not like you have an option to go anywhere else), and a fine cup of Starbucks coffee, I am told that a part of my bone has died and I get to wait until the middle of September to the next step. Yes I said a month. That is healthcare in Saskatchewan for you. You wait months to see a specialist, then you get the rushed tests, then you wait a month to see the results.
Of course no one is really dealing with the infection which beat it’s way past the antibiotic this week. I am on a yet different one. No expectation of making me better but I was burning up earlier today and partly from the fatigue, my breathing was really shallow. Since the inflection is also in my skin and the bone, when it gets bad, it is really painful. The ankle swells, is extremely painful to touch and the bone feels like it is going to burst. If you have never felt like your ankle bone was about to burst, it’s painful.
The pain is kind of manageable but the fever makes it so I can’t sleep. I find myself going downstairs to get some cold water, take a cold shower, drink more water, find another fan (as if that is going to help), go out for a walk, drink more water, take another cold shower…. it’s not exactly conducive to a good night’s sleep. Then when that doesn’t work, I browse the web. The markets in Asia aren’t the most exciting reading but you got to do what you got to do.
So right now for treatment, they are treating my vascular system in my legs which seems wrong to me since I don’t think I have a vascular problem. The problem I have is that I have a massive amount of antibiotic resistant infection in my bone marrow and when the antibiotics stop and the legs swell up, everyone goes, “vascular problem”. Yet when I am on antibiotics, the swelling goes away.
So after I lather on a “powerful steroid” leg to deal with the itchiness of the Coban wraps tomorrow. I realize that no one really seems to have a grasp at what is wrong with me despite me getting worse. The weird thing is that for one of the very few times in my life, I have no idea what to do.
For someone who doesn’t trust others very well, this is a long way out of my comfort zone, what’s worse is that I fear that it is costing me my leg.
No wonder I don’t sleep well most nights.
Update: Progress! I only have the Coban wrap on the leg that needs it (I am really happy with that). Am working on seeing if I can get into the infectious disease specialist that everyone thinks I need to see.