My Update and an Important Research Request

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 pamelatsigdinos@gmail.com) 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
ptsigdinos@yahoo.com
@PamelaJeanne

 

19 thoughts on “My Update and an Important Research Request

  1. Thats actually a very common “inside joke” in the childless not by choice widowed community too – because widowed parents are always saying that: “If I didnt have my kids, I couldnt do this.” Or “If my kids werent here, I would just die” or “Thank god for my kids”, well, you get the idea. Not a fun thing to hear over and over when you didnt get to have any kids and youre grieving THAT along with the death of your husband. Anyway, life is just filled with clusterfucks aint it? lol.

    • This perspective is important and a good thing for people to be aware of. What’s unfortunate is that it’s still 100% socially acceptable to constantly verbalize such things with no consideration for to whom one might be speaking. And further, the person on the receiving end without kids who may have tried very hard and/or wanted them is expected to empathize, while there is no reciprocity expected in return for our situation.

  2. “Random bad luck over which you have no control”….certainly speaks to me. My immediate thought after reading your post was “warrior woman”. I think what we’ve been through sets us up for that..or something like that description. Although some days are better than others we keep getting up and keep fighting. Take care of you. Thanks for the information on Pamela’s research. I have already emailed my responses.

    • Love that image! And yes, not that it necessarily makes up for anything, or that experiences beyond our current one aren’t also painful, but IF and involuntary childlessness provokes a major arsenal of powerful and unique coping skills. Was contemplating this as I awoke this am…..

  3. Oh yes, I have a condition that is random bad luck over which I have no control, and that when it flares up, it affects every single minute of my day. So you have my sympathies, and I’m very glad to hear that your neurologist has given you such great odds of a full recovery.

    .

    • Sorry to hear that Mali. Those things on which we have a limited affect, or no control over, are the hardest. Knowing that I will recover makes it an infinitely easier deal all around. My situation is so not a worst case scenario. So of course I’m getting “credit” from people for being “strong and positive”. Groan. I’m just telling the truth – that this is currently debilitating and a complete disruption to my life but in the long run, likely not such a bad deal. If it were a worst case scenario, I would be blunt about that too – but people who grasp at “positivity” usually don’t entertain such harsher realities.

  4. You know that I always appreciate your twisted sense of humor!

    I find the dynamic of the general public being supportive and well-intentioned to be very interesting. And very different from medical conditions involving the reproductive parts.

    Sending you continued good thoughts and well wishes. And maybe a virtual scratch-n-sniff sticker too.

    • The differences in response from my infertility and involuntary childlessness experiences – both medical and social – have been quite eye opening so far.

      And thanks, I think I read somewhere that virtual scratch and sniff stickers encourage healing in dysautonomia patients. Either way, I’m getting through this for my children……

  5. I’m glad to read an update from you! I am sorry to hear about the dysautonomia, but I am happy to hear you will recover (especially “for your children” haha!). I completely understand the “powerful and unique coping skills” one acquires after dealing with infertility. Every challenge I face now is met with the thought: well, I already lost my children so this is nothing. Thank you for continuing to write. I hope you feel well extremely soon. Thank you also for passing along the info for Pamela.

    • Exactly! One the one hand, I felt a bit more vulnerable about the idea of my symptoms needing long term management, wondering how much else I could carry and feeling that because I’m without the children I wanted I really need the rest of my life even more. But once I found out I just had to be sick for a year – I was like “oh, I can do that!” Thanks so much for your kind words and encouragement.

  6. I so admire your strength, humor, and perseverance. Wishing you WELL!

  7. Ha – cheeky!

    My goodness – you overachiever, you!

    I’m glad to hear it was diagnosed so quickly and that the prognosis is good.
    It was quite an interesting read learning about this condition.

    I came down with glandular fever right after we ended our fertility treatments. I spent the following 3+ years recovering from it.
    Work was the only thing I pushed myself for. Everything else stopped. I got back into knitting and reading and jigsaw puzzles. I had to let my body set the pace for the recovery. Looking back at that time, it was a godsend to be able to slow down and process, what had happened during the preceding few years, and the new sharp curve our future was taking… maybe another example of random bad luck over which you have no control.. .

    Hehe, I eagerly look forward to reading about your experiences over the coming months.

    • Wow – 3.5 years is a long time. Glad it aided your process instead of impeding it.

      I hear you on letting your body set the pace for recovery – every time I pushed myself before I knew what I had it backfired. I had to realize that, like grief, this thing is leading me.

      Funny thing about the timing though – I had recently, when going out into the world, started to find my old triggers less potent. And then all of a sudden I had these sensory issues I couldn’t explain and eventually, a legitimate medical reason to stay away from outer world mayhem. Leaves me wondering where was the dysautonomia when I needed it:-)

  8. I’m sorry to hear about your illness, but yes, you nailed it when you said it’s random bad luck and yes, that sort of story resonates with many of us here.

    Now I’m away to clean my ‘puter after choking tea all over it after reading you’re ‘doing this for your children’ hahaha my warped sense of humour exactly, right there. Reminds me of one IVF treatment and we told friends we were having a ‘family bbq’ for me, my husband and the embryos that had been placed a couple of days before. We had the confused looks, the speechlessness and thankfully, the accompanying laughter from those who share the same sense of the ridiculous that we do. Get well soon! xxx

    • Sorry about your computer. I tend to have that spitting/choking affect on people……..

      I love your version of a family bbq!!! Wish I could have witnessed people’s responses. The pictures of our embryos are buried in our backyard so I might have to steal that concept from you if you don’t mind. When I’m feeling better (months from now, but I will get better) and can have people over for some backyard grilling why I just might mention, in quite direct terms, that the whole family is present:-)

  9. You have been missed, and I’m sorry to hear the reason you’ve been absent. Wishing you a speedy recovery! ❤

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