Sunday, 7 June 2015
And I get Life
Well, the answer is a long one, (barring the 'hit by bus' scenario). I do not have a lung disease. No Rheumatoid Lung. No 'Atypical Asthma'. Nothing ongoing, which is a great relief.
What I do have is a pair of lungs that are gradually healing from being lacerated 3 times over the past 9 months. And the laceration came from the Macrodantin drug I took to control my UTIs. All of this is unpacked in the link to this previous blog.
It seems that only 1 person in 100 000 has this sort of reaction to Macrodantin. But the reaction is severe and life-threatening says my Pulminologist. That feeling I got that I only had a few minutes left when I left my kids alone at home and drove myself to hospital was spot on. That little psychic voice that told me to google the side effects of the drug was spot on. If I hadn't done that when I did it, or found the information when I found it, I wouldn't have made it to hospital. And my kids would have woken to find me dead in my bed in the morning. The oxygen that the hospital emergency room staff gave me literally saved my life!
Apparently the Macrodantin usually solves UTIs by making a cocktail of Formaldehyde in your bladder. It's a lethal concoction that quickly kills any bacteria in the bladder and is then expelled, not being absorbed by the body. But in very rare cases, mine in particular, for some reason the body makes the Formaldehyde in the lungs instead. That is a lethal thing - the formaldehyde sears all the breathing passageways (the incredible chest pain I felt), scars them, and makes it almost impossible for the lungs to function normally to extract oxygen from the air. Only the administration of pure oxygen will keep the person alive.
I'm pissed off that I was already communicating with my doctors the first time this happened to me that I thought the drugs had something to do with my condition. But the first Pulminologist was very set on his diagnosis of 'Atypical Asthma' linked to my extreme stress at the time that he was just not prepared to investigate my concerns. So I took the pill twice more, exposing myself to a lot more scarring, another hospitalization and two more life threatening moments before it was solved.
So all of this is completely unrelated to any of the Autoimmune issues I already have. It's just extra, on top of it all, that I have had to cope with this year. I feel pissed off that this has been thrown at me over and above everything else. Like why the fuck. Really?!
And at the same time I can feel the purpose in it. The incredible life changes I have effected because of the trauma of all of this. Because I have had to stop completely and look very long and hard at myself. And become more of the woman I need to be.
And I also feel more loneliness and bereftness through it all. Because to this moment I haven't been able to snuggle up in anybody's arms and cry about what happened to me. Someone who really really cares that I very nearly died twice this year. Someone who gives a shit that I'm still coming slowly back from that edge and fighting daily to reclaim my health. Reclaim my breath. Reclaim my body.
I'm glad I'm not dying. So fucking glad.
But I'm not over all this yet. Far from it.