So How Do You Do It?

Recently I blogged about what it's like to have Ehlers-Danlos Syndrome and the secondary conditions (dysautonomia and Gastroparesis) it's led to. It's not always easy.

Sometimes it's downright awful. 

I'm an honest person by nature. And though I don't often parade around with these raw emotions displayed across my face, I fully admit there are days I hide, days I stay in bed, days I cry in the shower, too weak even to stand, too discouraged even to reach out. There are days I wonder why I keep going, days I can't face the fact that this is what the rest. of. my. life will be like. 

But such days are the minority. They're rare. Most of the time, you'll see me smiling, and that's no lie. It's not an act. I'm not pretending or forcing the pain aside. Most of the time, I really am joyful. My life is full, despite these health issues. I am a wife. 

I am a mother. 

I am a teacher. 

I am a friend. 

Daughter, sister, volunteer--my roles are many. People ask me often, "How do you do it?"

To answer, I have to tell a story. 

Once there were three young men. They were faithful men living in exile in a foreign land. The king of this land enacted a law that everyone had to bow down and worship a statue of the king. These three  young men remained faithful to their God and refused to worship the king of that land. The king liked these guys, and that didn't sit well with some powerful people in the kingdom. So the powerful people watched the young men and caught them in the act of disobedience to the king and turned them in. The king was bound to his word, so he had them brought in to face punishment. 

What was the punishment?

Oh, just a furnace heated so hot it instantly vaporized the guard who opened it. 

Yeah. 

These men stared down the furnace and said words that ring through my head over and over again each day. "Our God can save us. But even if he doesn't, he's still God, and we'll still serve him."

God can save us. But even if he doesn't...

The men were bound up and thrown in. The king and his guards watched through the doors and saw four men walking around inside, among the flames. 

Now you're looking up a few lines, checking something. Yep, three men. So who's the fourth? Hang on. I'll tell you in a minute. 

So the king had the doors opened, and the three men walked out, no longer bound, not a hair on their heads singed, not even the smell of smoke on their clothes. The king was aghast and said, "No other god can save in this way!"

I'm staring down my own furnace of sorts. It's hot. It intimidates those around me. Those guys were on to something. God COULD save me. He could. It's within his power to heal me. But even if he doesn't. 

But even if he doesn't. 

The king said something else when those men came out of the fire. He said, "These men were willing to lay down their lives for their God. Praise be to God! No other god can save in this way!"

Remember that fourth guy? Most scholars believe it was Jesus. Jesus didn't start at the manger. He was with God from the very beginning. He was with Shadrach, Meshach, and Abednego. And he's with me. And so are so very many others. I'm not in the flames alone. 

In 1 Thessalonians 5, Paul (a guy who knew a thing or two about hard times) wrote, "Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."

I'm willing to lay down my life for my God. My life is his. God can save me. But even if he doesn't, may the world look at the way I stare down the fiery furnace and say, "Praise be to God!"

So...What Exactly Do You Have?

Explaining My Life With Ehlers-Danlos Syndrome, Dysautonomia, and Gastroparesis 

People often stop me to express their concern and love for me. They know I'm sick, and they care. But understanding what I'm sick WITH can be a bit of a challenge. When you live with rare or underdiagnosed conditions, it can be hard for people to understand what you're going through. If someone is battling cancer, we all understand what that means. Conditions like Lupus, ALS, or MS are common enough that people at least have an idea what they mean. But a diagnosis of Ehlers-Danlos Syndrome, dysautonomia, or gastroparesis can be harder for people, no matter how well-meaning, to understand. So what do these conditions mean? 

Ehlers-Danlos Syndrome is a genetic connective tissue disorder. I was born with it but wasn't diagnosed until I was 25 years old and a surgery revealed just how damaged my ligaments were. EDS is a collagen deficiency, so my ligaments, skin, blood vessels, and some organs are too loose and fragile. I partially-dislocate and hyperextended joints easily.  I wear ankle-foot orthotics and occasionally need to wear braces to stabilize other joints too. 

EDS often leads to dysfunction of the autonomic nervous system, the part of the nervous system that regulates functions you don't actively think about, like heart rate, blood pressure, temperature, and digestion. This dysfunction is known as dysautonomia, a term that encompasses many conditions. I was diagnosed with dysautonomia after fainting in the automotive section of a Wal-Mart. I struggle to regulate my heart rate and rhythm, blood pressure, temperature, circulation, and digestion. 

Likely a consequence of that autonomic dysfunction, I've also developed gastroparesis, a paralysis of the stomach. My stomach does not digest or empty as it should, causing pain and digestive distress and severely limiting what I can eat. 

This may be an oversimplification of the way these diagnoses are related, but it does help explain what's going on. 

So what does all this feel like? Think of having the flu. Your body aches. Your joints and muscles are sore, and it hurts to move. It's like you've hyperextended every joint, pulled every muscle. That’s what the EDS feels like. You feel weak and tired. You nearly pass out every time you stand up, and your head hurts. Your heart races to keep up. You have to muster up the will to take on simple chores, or they may be insurmountable. You find that you have to take a break in the middle of even small tasks. That's what dysautonomia feels like. Your stomach aches, and you're afraid to eat because it could make you ill. Anything you eat or drink refluxes into the back of your throat. You feel nauseated like morning sickness, your lower gut feels unsteady, and you have no appetite. The pain feels like giving birth through your intestines while someone squeezes your stomach. That's what gastroparesis is like. Some days are better, even nearly normal. Some days are bad--all this and worse. 

And what does this mean for me? I am sick. Barring dramatic medical advancements or a miracle, I will always have these conditions. I won't get better. I'll have good days, and I'll have bad days. But there's no remission. No cure. Very little even in the way of treatment. I could lie in bed. I'm sick, after all. But I don't want my life to BE these conditions. Yes, they are a part of my life, and they are like a lens that tints everything I do. But I love my life. It is full of happy, worthwhile things. I am wife to a great man who has dedicated his life to loving God and loving people. I am mom to two wonderful boys who face each day as if it's a grand adventure (and give the best snuggles ever). I am member of a church that has shown me such tremendous love and support. And I am a teacher to students who need my creativity and quirk to help them find their route to success. 

I do not plan to stop working. If you've read my magazine article or the article about me in the newspaper, you might have guessed my career is a source of great joy to me. Being a teacher is to me like being a musician is to Billy Joel or happy trees were to Bob Ross. It's not just my job--it's part of who I am. I love it. But I don't want my job to leave me too depleted to be the kind of wife, mother, or friend I want to be. So I'm having to rethink what my daily life looks like in the small things. Chores, errands, volunteering, making the day-to-day work. I plan to write separate entries about how I do that, at home and in my teaching. For now, though, suffice it to say that I can't do it all. I have to say no to some valuable things, and I have to find new ways to do some essential things. I may need to accept help. That's hard, but I can't keep living as if I'm “normal.”

People sometimes comment about the grace, strength, and faith they see in me as I go through all of this. That's humbling to hear, but it's a blessing. I'll share more about that in a future post too. 

For now, hopefully this entry gives you a better idea what life in my shoes (or rather, braces) is like. The simple fact that you're trying to understand shows me great love and helps me feel less alone. For more information about these conditions, I recommend:

www.ehlers-danlos.com

http://www.dysautonomiainternational.org

https://www.g-pact.org

I understand people may want to help. I'll share some ideas soon. In the meantime, if you want to show support, consider a direct donation to any of the above organizations, or purchase a Bravelet. When you purchase Bravelet jewelry, $10 goes to one of these organizations, and you get awareness jewelry that is actually fashionable. When people ask about your Bravelet, you can tell them about me and spread awareness while your money funds support and research. 

https://www.bravelets.com/bravepage/ehlers-danlos-national-foundation
https://www.bravelets.com/bravepage/dysautonomia-international
https://www.bravelets.com/bravepage/fight-digestive-tract-paralysis

Thank you for your love and support. Thank you for trying to understand this journey. You give me strength and encouragement. Thank you. 

An Update on My Health

Some of you have asked for an update on my health, and I can't find a way to do notes on Facebook anymore (except that they now let you write a status the length of a Super-Mega roll of toilet paper, which might be a tad obnoxious), so I'll write it here and link it on Facebook for those of you who are interested.

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
• fevers

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.

Encouraging, right?

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 :)