| Blog series by Sandra | updated 86 days ago | 6 parts | 8097 reads | 119 comments total |
Part 1: The pity party is over
Was in Halifax this week for testing, and FINALLY it’s been confirmed that there is something serious going on with my nervous system. Without going into mind-numbing detail, I’ve spent the past 18 months in a big cloud of uncertainty. I was hospitalized, initially diagnosed with ankylosing spondylitis, then that was tossed, hospitalized again, maybe MS? Not MS. Hospitalized again, more tests, more waiting. Back to work, off work again, etc etc etc. I don’t have l...
Part 2: Back in hospital- need a good laugh
Back in the hospital with whatever this health issue is. Latest report reads “findings are compatible with large and small sensory fibre dysfunction or with dysfunction of central sensory pathways….” Goodie. Just sent hubby home to get some rest. Any good/moderately off-color jokes to pass the time?
Part 3: Down but not out
I got home from the hospital on Tuesday night after being admitted on Sunday with a racing heart and high blood pressure. Those were the same symptoms that started the dominoes falling 18 months ago. Since July I’ve had a possible diagnosis of small fibre neuropathy. On Monday, the latest neurologist confirmed it.Essentially it’s a diagnosis that identifies the process going on, but not the cause. There’s a 50/50 likelihood of finding the cause. If they do (the myster...
Part 4: Is it giving up, or is it accepting what will be?
After my last stint in the hospital, i’ve been put off work again. At the end of the day, it’s highly likely that my small fiber neuropathy is going to be deemed idiopathic. In other words, I have a diagnosis for the process that is causing nerve damage, but no cause and therefore no treatment other than symptomatic. There are still some outstanding test results, but they are for rare diseases that quite frankly I’d rather not have anyway. This whole ordeal has been go...
Part 5: Bungie cord injury. Dufus factor squared
I don’t think I could do this again if I tried. At least all I ended up with was a sore nose and a headache. I went into the shop this morning to set up my miter saw. It’s on a Ridgid stand that I fold down when not in use. When I bought the saw and stand secondhand, there was a bungie cord attached to the stand. I soon realized that it was because sometimes the stand doesn’t completely click when folded away. It’s not an issue for me, but the previous owner wo...
Part 6: Having ologist-itis...
Last week truly sucked. I typically don’t like that expression, but in this case it sums it up nicely. In April, it will be two years since I started this medical misadventure. Before last week, my diagnosis was idiopathic small fiber neuropathy. In other words, you have nerve damage. We don’t know what caused it. It may or may not level off. Go home and take drugs, or surround yourself with white light, or eat kale, whatever works. In my case, my pain management has invo...
