Slowly over the last few years (maybe longer), I've developed some symptoms that extend beyond even the bizarro-world of Ehlers-Danlos Syndrome. Around Christmas, enough of those symptoms began to overlap that I realized I might be facing a new problem. A month ago I saw the doctor, and he ordered some tests to rule out more obvious causes like infection or inflammation. Those tests were all normal. Which is good...and bad. I went back to the doctor today, and he confirmed my suspicions: I have autonomic nervous system dysfunction.
I know, I know. You're asking, "What in the world is that? What does that even mean?" Well, in a nutshell, it means that the things my body is supposed to regulate automatically aren't being regulated. That includes heart rate, temperature, blood pressure, circulation, aspects of vision and speech, and the movement of the digestive tract, among other things. The most obvious symptoms I've been experiencing include:
- a disturbing lack of ability to poo (so much so that I'm now blogging publicly about it)
- numbness and tingling in my hands, arms, feet, and legs
- trouble speaking; my mind knows what it wants to say, but my mouth won't obey
- irregular heart rate
- irregular blood pressure
- feeling faint or dizzy
So here's what that means for me. I've been taking medication to regulate my BP and HR for a couple years. That's already covered. It will still fluctuate, but the meds will mostly keep it under control. I now need medication to keep my GI system moving. No meds, no movement. We can't do anything about the fevers, dizziness, numbness, etc except to accommodate those things in my lifestyle and try to deal with them.
I'm fortunate to have a truly amazing doctor. He took a great deal of time with me today and demonstrated genuine compassion and concern. He's working on getting me into a specialist, but that will likely take several months. He's also trying to help me know what to do to manage my life. He's the doctor for my whole family, so helping me deal with my conditions involves helping me take care of my life without sacrificing my family's well-being.
Now how does this impact my daily life? I sought a transfer to a less stressful position at work but was denied. I'm doing what I can to make my current position a little easier for me to manage. And I'm grateful to have a job. But it's hard. My job isn't exactly killing me, but it is a huge part of why I keep getting worse instead of better. My body just can't work that hard, with that much stress, every day and keep going without consequences. I'm causing bits of damage every day that just build up because my body doesn't have a chance to rest and heal. Don't get me wrong--I'm extremely grateful to have a job, and a job I love at that. The great news is that I can provide for my family and continue my career. The bad news is just that I might not physically be able to sustain this...even though I have to. We cannot afford for me to not work, and I'm our insurance carrier, so this is it.
So how do I make it work?
- Family: Nathan is an amazing husband. He is compassionate, patient, supportive, and strong. He takes such great care of me. I am so fortunate. My kids love me, challenge me, delight me, and encourage me. My parents, siblings, and Nathan's family are all so encouraging and supportive. Our boys also have the best baby sitter imaginable. She considers them her grandkids and us family. I am blessed.
- Friends: I have the kind of friends that would be here in a heartbeat if I asked for help. In fact, a friend was willing to leave her own job early to keep my kids so I could go to my appointment today. Thankfully she didn't have to, but knowing she was willing...that's humbling.
- My needs are met: I have a home, food on the table, cars to drive, insurance, even (meager) savings.
- Balance: Some things matter. Others don't. A dirty floor will still be dirty tomorrow, but maybe rest today is more important. Or dessert with a friend. Or snuggles with my kids. Or a date-in-night with Nathan. I have HAD to learn to let some things go. And that's OK. And in a pinch, those family and friends I mentioned above are around to lend a hand.
- Joy: Joy is a choice. It's different than happiness. We FEEL happiness. It happens to us. But joy is something we choose and claim no matter what happens to us. And I choose joy. Even on a bad day, I can count my blessings and smile a genuine (albeit tired) smile because despite it all, God is still good, I am still blessed, and when my head hits the pillow, I am satisfied I've given my best today.
- Faith: Listed last here, but not last in importance. God sustains me. When I am not enough, he is. Even when I'm struggling, God has not left me. He loves me. And he has a purpose in all of this. Maybe his purpose is that I impact someone else through my journey.
There ya go. I never intended this blog space to be entirely about my health. There are enough health blogs out there already. Instead, this is just a place to share what it means to be ME, and yes, my health is a part of that. There are lots of people in this world battling various forms of chronic illness. I've noticed that a lot of them are defined by their conditions. They focus on their symptoms, medications, appointments, and challenges to such a degree that we don't see the person anymore, just a diagnosis. I commit to being more than that. I am a person. I am transparent--what you see is what you get--and I commit to living life as an open book. I will not claim to have it all together (because I don't), to have all the answers (because I don't), or to know what tomorrow will bring (because I don't). But I'm learning a lot on this journey, and I'm willing to share it all, the good and the bad. And that's what this little blog space is all about.
I appreciate your prayers and support, but please remember, I'm OK. No need to worry about me! I promise I'm still smiling :)