Rant rant rant

Wow, it's been awhile. Haven't been in a chatty mood, I guess. What's changed? The feeling that no one is listening.

I'm in pain. Constant, Chinese water torture test, pain. My lower back feels like it is trying to either fuse into a solid sheet of bone or leave my body completely and the small joints in my feet are sore. It hurts to walk. It hurts to sit. It hurts to sleep.

The unfortunate reality is society is not equipped to deal with chronic pain. We - the big we - are more than adequately ready to deal with acute pain: breaks, strains, tears, cuts, scrapes and the like. But when society tries to apply the same rules to chronic pain as they do to acute pain, the sufferer pays the price. People with chronic pain do not get "better." They get by.

It's far easier to blame things like the weather, or the type of chair someone is sitting on, or the exercises one is or is not doing, or what they are or are not eating than it is to accept the simple fact that there is pain out there that does not go away. Ever.

People mean well. But it is extremely frustrating to be the one with forever pain who has to sit back with patience and listen to yet another well-meaning person try to fix their unfixable situation. Maybe you should... But have you tried...? Well my uncle did this...and it worked.

Employers don't get it unless they have it. And then they try to fix it instead of help manage it.

And since when did being in pain end up becoming some sort of contest? Here's a hard truth, folks, the person in the most pain at the end doesn't win. There are no trophies for stoicism. And if i hear "stiff upper lip" "keep your chin up" one more bloody time I'll snap. I'll respect your pain if you'll respect mine.

The next time you see me crying Job's tears, don't try to fix it, and don't tell me to feel better. Pass me a tissue and let me cry. I need the release that comes in tears and in questioning
G-d for giving me this burden to carry.

It's April 11th and it's snowing

It's one thing to be sore from arthritis, it's quite another to feel like someone has poured molten glass in your joints and the pain is so bad you don't want to eat because of the nausea. And the weather certainly isn't helping. While there isn't any clear cut scientific evidence supporting the whole "weather" thing with arthritis, I know from first hand experience that I hurt when the weather changes.

Spring is one of my favourite seasons - things are in bud and the first blush of green appears. Pussy willows (okay, okay, catkins) and the wonderful sound of birds - my neighbourhood has quite the avian population. Blackbirds, chickadees, juncos, sparrows, finches, robins, and across the highway a kildeer family and an American kestrel that likes to play telephone pole tag with me when I go for my walks. And then there's the redtailed hawk that sits on the streetlight on the highway and takes to the sky to catch the thermals that rise over the field. It is quite something to watch her/him hunt. And there's the herd of mule deer that graze on the side of the road and curl up camoflaged in last-years grass and bask in the sun while motorists speed by unaware of their presence.

The weather office says the cool temperatures and snow this time of year is "normal." My bones ache for warmer days and sunshine and my camera wants to capture bees hovering over clover blossoms.

Soon.

"You get love, pain, and the whole damn thing," sings Amy Sky and this song has become somewhat of a theme song for my life. I have ankylosing spondylitis, an inflammatory arthritis that causes pain and inflammation primarily in my spine but also in my shoulders, hips, knees, and on days like today, in my rib cage.

I also have a permanent ileostomy, the end result of a 10 year battle with ulcerative colitis. I will wear an ostomy appliance for the rest of my life, which is okay considering the alternative was a body bag.

Dealing with these medical challenges has been a double-edged sword. I have learned how creative I am, how great I am at problem solving and how to look at situations from more than one angle. I have also learned how frustrating it is to no longer be able to plan ahead because I never know when the next flare-up will happen nor how what I've eaten will be tolerated by my shortened GI tract.

I have met some incredible people along the way; those that have helped me open doors and those that have closed doors literally in my face. My favourites have been the ones that make me laugh.

This blog is about my journey.