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How Did We Get Here and Where Do We Go From Here?

The Grass isn't Always Greener.

By Jessica MusanoPublished 2 years ago 4 min read
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Symbol of hope, love and perserverance

So here we are, getting back into the swing of life, trying to move forward and seeming to do a decent job at it. He was working as usual, I was working, I added therapy into the mix, because everyone could use a little help now and then. We were getting back to it and moving along with life. But let's remember, Covid-19 was a thing, as we all see it still is today. Things were ramping up, masks and lockdowns were everywhere and we were suddenly entrenched in, are either of us still going to be able t0 work since they are shutting the world down? The short answer, thankfully was yes. We both were able to keep working, because both of our jobs were deemed essential. But with a catch, my job was almost entirely unaffected, we had to reduce hours, so there was less overlap between employees and his job split their shifts so that there was less over lap but the same amount and time for production, so he was moved to overnights.

this change was very much hard on both of us. we barely saw each other except mostly in passing. he came home as i was leaving for work and we had barely enough time for how was your day, it was rough to say the least. I can't imagine how couples or couples with kids live on opposite schedules for indefinite lengths of time. we were loosing ourselves, we were loosing connection with each other, we were slowing turning into roommates.

As things began to hit a status quo with Covid-19 and our jobs were slowing able to start shifting back towards what used to be normal, we kept trying, trying top reconnect, trying again for another chance to hopefully become parents, almost to no avail. in the next few months we ended up having to chemical pregnancies. At this point, we were coming up on a year of trying and nothing was working, so what next, seek out help, see if someone somewhere can find a possible answer. So off we went to fertility doctors and the work began.

And, some answers we got. The doctors started with me. Lots of scans, and tons of blood work later, we had an unexpected and big answer, that led to more questions and more tests and some more answers. What was the answer you might ask? Well, after much blood work that only showed minor thyroid issues and a script to help that, we found out that I have a very rare genetic disorder that was preventing all these pregnancies. I was officially diagnosed with Turner's Syndrome. Now most people here this and are scared, because as I'm sure, you as the reader, are probably asking What is that? I've never heard of that before. Most people haven't, most doctors haven't.

Turner's Syndrome is a genetic disorder that affects only those who were assigned female at birth. It can only be found by testing a person's karyotype, that means testing their DNA, those 23 pairs of chromosomes. This syndrome is shown on the gender chromosome (XX) and either the lack of or missing piece of the second X chromosome. This is where the answers with more questions comes into play. Because as the course of my life would have it, my very closest friend from way back in college has exactly this diagnosis, so thankfully for me I've heard of it before and have at least an outsider's understanding of what it means, what it could mean.

I though, am very different from this close friend and I don't have some of the physical traits that she has, I don't as of right now have the same health issues she has and I am quite a bit taller than she is..... Sooo, how do I have this, how an I only finding out as a adult, because you see, this disorder is so rare, so rare to survive that only 2% of cases found to have turner's syndrome making it to a full term healthy baby. How am I here, how did i make it?

For the majority of cases that do survive, there are signs, very early in life and being diagnosed near the end of adolescence is considered a late diagnosis.... and in even rarer cases, such as mine, some women wont find out that this exists in their live until, like me, they are trying to start a family.

But, how is this possible? I am not short stature, at least not according to what is considered the average height and weigh of a female in the US, BUT I am several inches shorter than the rest of my family. I am borderline hypertensive (anyone can be borderline), but have extensive family history of heart disease. I have smaller than normal ears for a grown woman, but everyone's ears are different. I was diagnosed with ADHD when I was eight, (very common with turner's syndrome to have comorbidities), but that was also a time where way more children than normal were being diagnosed, so it was normal to have that diagnosis. But, do you see how all of these things I've just told you could be explained away? Only after several unsuccessful pregnancy attempts did i find out that all of these things were actually related to each other because they are all things that have a higher rate of occurrence together if you are someone who has Turner's Syndrome.

There can also be other issues that pair with Turner's syndrome, like a webbed neck (excess skin at the base of your neck), lower hair line at the nape of your neck, heart health/function/structure issues, liver health/function/structure issues, liver health/function/structure issues, diabetes, learning disabilities, bone density issues, coordination/depth perception issues, even fertility issues all the way up to being sterile. You see, Turner's Syndrome is a lot like Down syndrome or Autism, in the way that no 2 cases will ever present the same, or to the same severity.

So all this to say, now, we finally have an answer, but sooo many more questions.

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About the Creator

Jessica Musano

35 years old

Wife

Dog and Cat mom

Loss mom

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