the adventure continues.
I’ve attempted to write this post for awhile now. But it just hasn't quite flowed right every time I try. I'd like to blame pregnancy brain, but I think it has more to do with just navigating and processing as a whole. And exhaustion ;)
My last post was about my trip to Boise to see my functional medicine doctor. As you have maybe figured out, we had to put doing any other type of protocol on hold due to the pregnancy. When we left we thought there might be a possibility I could still do it. But after he consulted with a few other doctors they decided I should wait until after baby. I wasn't thrilled about this. I completely understood why and obviously would not want to add any risk. There was still disappointment though. It ultimately meant I'd be waiting a year before I could start anything. So I just let myself be upset about it for awhile and I've come to terms with it.
There have been a lot of emotions for me surrounding this pregnancy. More so than with the other two I think. I honestly didn't think I would get the opportunity to have another child. So that in itself sometimes overwhelms me to happy tears. With that there has been a lot of fear. The fear has thankfully subsided some as time goes on. But at first I just knew how challenging it could potentially be with my already existing health issues. And then I was worried about the judgement I'd get about that. But sometimes even the healthiest person can have a difficult pregnancy. So you just don't know and have to take it one day at a time. And I was also very wrong in my judgement worry. People have been incredibly excited, at least to my face ;) The excitement has really helped me through some tough days, so I really appreciate it.
Mixed in with these happenings I had an evaluation done for Ehlers-Danlos Syndrome. Long story short, someone posted about it, I had some commonalities, looked into it, made an appointment, and here we are. After going through the evaluation (which I'd be happy to tell anyone about if they care to know) and doing some additional testing I have officially been diagnosed with hypermobile Ehlers-Danlos Syndrome. What does that mean? It means you don't want it and wish it wasn't true. ha! But in scientific terms, it's an inherited connective tissue disorder that affects the production of collagen in your body. Collagen is the most abundant protein in your body and makes up about 30% of total protein. We often think of collagen in terms of beautiful skin. It's become a very popular supplement as of late. But it's more than that. It affects your entire body: skin, organs, blood vessels, digestion, bones, joints, muscles... you get the point. Can you just supplement with collagen and feel better? No. Collagen supplements are made up of amino acids/proteins. Your body will use these amino acids to make more collagen in the body, but it will still produce defective collagen if you have EDS. Currently EDS is considered a rare disorder, but is suspected to be underdiagnosed. And since it's underdiagnosed there hasn't been enough research and studies done on it. Though it seems awareness is increasing and hopefully more resources will be attributed to it. There are 14 types of EDS, most types have a specific genetic variant identified, hypermobile currently does not (hopefully they can figure that out soon). It's lifelong and there is no cure. Everyone with EDS experiences a wide range of symptoms, each unique to oneself (they call us Zebras). It's not a one size fits all disorder. Which means that management is different for everyone and takes time to figure out.
Since learning of this and processing it I've been able to understand why I've had certain difficulties all my life. When I was younger I honestly don't remember how often I was vocal about how I was feeling. Right after my evaluation I was talking to a friend of mine and I mentioned my headaches when I was younger. She said she remembered that in elementary school. The fact that she noticed it back then made me take pause. My hyperextending joints were well known when I was younger. It was the unique weird thing I could do which I'd later become self-conscious about. If I catch myself standing relaxed I'd adjust to try and look "normal" before anyone took notice. I'm not sure why or what caused this shift for me to become more self-conscious about it. I'd get weird pains that were chalked up to growing pains. I was tired all the time, which turned to being self-conscious about being lazy. So I'd try to sneak naps or rest when I felt no one would notice or I'd push myself beyond my limits. There's more but I think we get the gist of it. These things accumulated and worsened over time. But let's not mistake this for a lack of joy and happiness in my life, because as far as I can remember I was still happy most of the time :)
I'll get into more about what EDS can do to one's body in another post. In the meantime, here are a few TikTok videos I came across that go into a quick overview if you're curious.
- Ultrasound next week
- EDS management appointment with one of my doctors
- Echocardiogram (to check arteries/valves as these can be weak with EDS, though not common with hypermobile type)
- More testing to follow after pregnancy
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