Street Corner Conversation #4 “Have you always had this?”

“No. But yes.” (Helpful, eh?).

The longer answer is “Yes, I have had it my whole life. But I didn’t know it, and it was nowhere near as bad as it is now.”

It’s amazing what you can see in hindsight. I have had relatively minor ailments my whole life. They were always ‘atypical’ or ‘idiopathic’. And very often a wait with a specialist would take 6 months; Waiting six months to hear the Latin name for exactly what I described, and told that there was nothing that could be done about it. I kinda stop trying after a while. Now that I know that I have MCAS, EDS, AD, etc etc. it explains so many things. (I’ll be posting the full list soon.). Tick borne illnesses (such a lyme and bartonella, anaphylaxis to beef) come up quote often with MCAS patients.
Many people with MCAS can give the exact date or month when we got sick(er). The use of ‘sick(er)’ is common on MCAS sites and supports groups. I think the genetics is likely a predisposition. A common pattern is that I had stable health (perhaps not often ‘well’, but not actively sick either). Then I would have something (an infection, a trauma- physical and/or emotional, a car accident, a baby, moving houses, dental surgery, etc, etc,¬†etc.), that would trigger that predisposition, and I’d take the next step up. I never quite recovered fully after each ‘step’. I’ve been actively sick since November 20th, 2011.
[A quick aside- it warrants further exploration another day. In the Pacific Northwest and BC’s lower mainland, a stunning number of us got sick(er) in the late summer/fall of 2011, or early winter 2012. It can’t be a mere coincidence. I suspect it will take a long time for us to establish the extent of it, let alone the cause…. the most obvious possibility being radioactive or toxin exposure after the tsunami and nuclear meltdown in Japan in the spring of 2011- (If I were actually chatting with a stranger I save my wild speculation- I’d rather not be put immediately into a tinfoil hat category.) In all seriousness though, there’s something there.]

There are several times in my life that I’ve taken a step downwards health wise. There are a few ‘biggies’; some of which I can explain, others that I can’t. An example? Hmmm- come and sit down for a minute and I’ll tell you the story.

I got my wisdom teeth out in between the end of camp, and going off to my fist year at McGill. Oh man, was that a bad idea.. I had an allergic reaction to the antibiotic (if only I’d known then what I know now….). You get very little sleep working at a summer camp- especially an Easter Seals one. Some campers had to be rolled several times a night… add in campers’ homesickness, quick trips to the loo for one, a glass of water for another kiddo… It would be time to turn the first child again… We had on duty and off duty nights- but we were sleeping in the same room, so a good night’s sleep was rare. I had the dental work done when I had active bronchitis (this was so common for me that it barely registered as important). Then, I had frosh week (enough said…). So I got sick. It didn’t stop me in tracks, but it affected everything I did. I had to drop a couple of classes, including biochem.

If only I’d known how helpful organic chemistry would be to me down the line.

I went on prednisone, gained 30 lbs. I was told that my lack of energy was because I was overweight, and I needed to exercise more. My first yoga class the teacher told me to leave because I was coughing so much…, and was quite rude about telling me that with my obvious knowledge of yoga, I should have known better. (It was my first yoga class ever. She told me I had to be lying- nobody was that flexible without training….). When I didn’t really recover, I had one physician tell me that I technically fit the criteria of Chronic Fatigue Syndrome. It was an excuse to be fat and out of shape, in his opinion. I just needed to push through (I hate that phrase now…).
MCAS isn’t a degenerative disorder, per-se. I think the term ‘progressive’ fits better. It waxes and wains depending on a whole myriad of factors. It does not go into full remission- and we often become less functional with each step. That said, it’s not a one way street. The symptoms can be reduced and our lives improved significantly.

Are you still here? Start a discussion!