Hey there readers!
In know it has been awhile. I noticed my last post was almost three months ago, and I’ve missed you and everything about writing and all that goes along with posting.
Let me get right to the point………..….I’m not pregnant. Ha!
I am, however, dealing with a condition called dysautonomia. Two important things on that – it is very debilitating AND I’m expected to recover fully. After two months of trying not to faint and throw up (among other things) I received my diagnosis as well as the all too welcome news on Feb. 14 that this thing will go away eventually, and I’ve been taking it all in. I should see small improvements month to month and my neurologist gives me a 90% chance of recovering in a year.
Dysautonomia is a dis-regulation of the autonomic nervous system, so I’ve been dealing with lightheadedness, dizziness, heart palpitations, shortness of breath, digestive problems, rapid weight loss and extreme sensitivity to auditory and visual input. My autonomic nervous system either over or under assimilates stimuli. Function inside my home with some medication is fair, I’m not able to do much out in the world yet. I have post infection dysautonomia which likely developed to due a minor cold I had in early December.
So in other words, it’s random bad luck over which I had no control that doesn’t really mean anything yet totally impacts every aspect of my life. Oh, can you hear the bells clanging, my fellow infertility and other trauma survivors?? I know you can:-).
Don’t worry about me. While this has been quite sideswiping and will continue to be for some time, I’m so grateful I get to recover. The things we get to leave behind in life, that’s not the real tough stuff. And really, after 4 years in the perpetual trauma and heartbreak of trying to conceive, and three years in the grief of children, parenthood and grandparenthood denied, what’s one friggin year with dysautonomia? Seriously. I come to this pretty well qualified. And I know you do too, those of you who are facing challenges post life crisis. For those of you who are facing a life crisis on top of a life crisis, well, you’re just wiser than me.
My twisted self is of course looking forward to joking about “getting through this for my children” (more infertility humor I doubt most will get). And I’m delighted to announce that to date, no one has told me that since I have dysautonomia, I’m lucky I don’t have kids to worry about. Some might be thinking it but are likely too afraid to speak (as they damn well should be).
My writing brain is returning and I’ll be writing about my experiences in full detail soon (yeah no worries THERE). It seems the minimized blood flow to my head has not impeded my sarcasm and creativity much. Or my drive towards activism, which brings me this important research request. It’s a good opportunity to participate in the creation of a more complete and truthful assisted reproduction narrative.
My friend and colleague Pamela Tsigdinos is working on a magazine piece. The story will be multi-dimensional and incorporate anecdotes and experience from women (some like me) who went through fertility treatment some years ago as well as those who engaged more recently in treatment. She is canvassing a broad cross section of women. Equally important she wants you to have peace of mind. She will not include any information (even a first name or alias) in any reporting without your consent.
She’d like to start with a few basic questions to collect some facts and anecdotes across a wide spectrum:
– your age (and year) when you sought treatment;
– where you lived during treatment and where you live now;
– how you decided on the clinic you chose;
– the circumstance or condition that prevented you from conceiving;
– the procedures or protocols you’ve had (and their outcomes);
It would also be helpful to get some description of the consultation itself:
– Did you interview more than one clinic?
– Who at the clinic was your point of contact?
– Who provided the treatment menu and what sort of medical advice (risks or otherwise) did you receive going in?
– What do you wish everyone knew before going in to a fertility clinic?
– What sort of emotional support did the clinic provide?
Please send your thoughts and any other background you’d like her to have via email (please send to firstname.lastname@example.org) next week. In a perfect world she will try to speak to as many women as possible even for 15-30 minutes by phone, but she may not have time to interview all by March 3. Thanks, in advance, for your help!
Pamela Mahoney Tsigdinos
Award-Winning Author & Top Health Blogger