All Aboard The Struggle Bus

I’m going to be honest, my first name idea for this blog was “Unwell Isabelle” because it rhymed, but I ended up going with something a tad more neutral. If you’re reading this, it’s likely that you already know me, and may know that I have struggled quite a bit with chronic illness in my life - especially related to my autonomic nervous system (thus “Autonomically Isabelle.” It’s clever, I know). 

For years, I was a medical mystery not taken seriously by doctors because they thought I was just a hysterical teenage girl wanting attention. Then I finally got diagnosed with my autonomic system disorder, and learned to cope with it over the course of a few more years. Just the other week, I was unexpectedly diagnosed with a central nervous system disorder that puts my entire life into perspective. (Seriously, now EVERYTHING makes sense.) 

Even now, I am learning new things about my body and my messed up nervous systems that I never anticipated, and raising new questions I never thought I’d ask. 

Recently, I discovered that my dad had an old blog documenting his journey with panic attacks (which he didn’t know were panic attacks) when I was very young. I got the chance to read through all of his entries and was just thinking I’m so glad he wrote this down. I learned a lot and it was cool to see what life was like when I was that age (even though it sucked for him; sorry dad). 

This happened the same time I was working on a full medical history write-up for a new doctor. I texted my best friend Katie, “My medical history has become less of a simple bulleted list of information and more of a memoir…“ 

She told me “You should write a memoir, you’ve got enough to talk about.” 

These things in combination made me think hey, maybe I should start a blog of my own, devoted to my illness(es), so I can have everything laid out and look back on it in the future. I am nowhere near done with this journey; I am still learning and navigating my way through it now! It will be an easy reference point for anyone who has questions (and I get a lot of questions, which is fair...I also have a lot of questions about myself). It is a great way to update family and friends all at once, and I won’t forget who knows what. I'm not discounting the therapeutic value of this, either. 

Plus, there’s always a small chance that if the right person reads it, it could change someone’s life - getting diagnosed with an invisible illness is a long, winding road, where people scream profanities and throw sharp objects at you as you timidly walk by. If just one person in my life had even vaguely heard of this “women’s disease,” it would have advanced my road to recovery by years. Even today, I constantly find myself explaining my conditions to doctors who have never even heard of them. These are the same doctors who are potentially in charge of diagnosing other people with the same thing. The story of me finally getting a real diagnosis is a frustrating one. Education is improving, but it’s nowhere near the level it should be for something that has this high of an impact in this many people’s lives. I believe that awareness of these illnesses are becoming more important by the day, so this is also my way of spreading the word. 

This is just my introduction, but soon I am going to make a series of posts explaining what exactly is wrong with me until we are all caught up to my current messed-up self and how she is coping. 

As I mentioned above, I just got a brand new diagnosis and am still learning to navigate life with my crazy impaired nervous systems. 

It is my goal to be completely transparent and honest in sharing this full health journey - I don’t even feel shame anymore after casually explaining my poop-fainting to so many doctors. (That’s just a quirky little thing I do sometimes.) 

While I can post about whatever I want because it’s my blog and all of three people will read it, I am making this solely to document my physical health. My mental health is a whole other can of worms, and honestly, I’m tired of talking about it (it makes me cry). So while I have lived my entire life crippled by extreme anxiety and OCD, and will continue to do so for the rest of my days, that’s not what I am going to be focusing on here. We are going to discuss happier things, like chronic pain and my hair falling out. Let’s get to it! 

Autonomically,

Isabelle

(Okay, is that too tacky? I thought signing off that way might be kind of cute, but it looks ridiculous now that it’s done. I guess I need to have a signature though, so I’m keeping it for now.)

P.S. - 

I am still not done talking. I changed the settings so that anyone could comment without making an account, but it would be anonymous. If you do ever feel inclined to leave a comment that way, please include your name so I know who you are! Also, there is an option for anyone to sign up to be emailed when I make a new post (through another website, after I failed to learn beginner coding at 1am last night). I don't have the time of day to post frequently enough to be annoying; it's more of a backup plan for when I haven't posted in so long that people forget that this page exists. Thank you for taking the time to read this!