Idiopathic Hypersomnia and a Sliver of Hope

I first became sick four years and one week ago and have since received countless diagnoses.

Cardiogenic shock. Translation – total system failure (or, as I like to call it, temporary death) caused by heart failure. Dilated cardiomyopathy. Translation – my heart was too large and too weak. Pleural effusion – fluid in my chest cavity. Renal insufficiency – kidney failure. Chronic kidney disease – after my kidneys started working again they became permanently diseased courtesy of a necessary medication. Diabetes – elevated blood sugar levels that cause your every thought about food to be considered through a new lens as irritating as a gnat that you can’t smack. Edema – swelling due to fluid build-up. Anemia – reduced red blood cell function. Hypothyroidism – reduced thyroid function. The list goes on.

One might think I would hope to end the slew of diagnoses, but not when another condition has gone unexplained for years. I have struggled with debilitating chronic fatigue for nearly three years now – THREE YEARS. I’ve dreamed of pinpointing its cause and have gone to great lengths in pursuit of a diagnosis. In my desperate attempt at solving this mystery, I admit I have hoped for positive HIV test results, hepatitis, multiple sclerosis and other diseases and conditions that make most people shudder.

A cure would be nirvana, but I would settle for a concrete cause – a diagnosis that ascribes science and legitimacy to the way I have felt all of this time. An undiagnosed debilitating condition is treated as frivolous by many and is absolute torture for the person affected.

My latest answer-seeking endeavor has been with the Emory Sleep Center here in Atlanta to follow up on an abnormal sleep study I had a couple of years ago. My new doctor is an expert in the field of sleep medicine and seems highly sympathetic to my situation. I participated in a second sleep study a couple of weeks ago, which was followed by a full day of sleep testing that was as close as I have gotten to Chinese water torture – more on that another time.

I haven’t seen my doctor for follow-up yet, but I did get my hands on the report. And halleluiah, there was indeed a diagnosis right there at the top: Idiopathic Hypersomnia. The earth-shattering translation goes something like this: “We have found that you are abnormally tired all of the time and require an extremely excessive amount of sleep, but we have no idea why.” Reading that felt like I had finally found the location of the elusive holy grail, but someone had replaced it with an empty red solo cup.

However, to put my cynicism aside for one moment [wait for it], I do maintain hope that my doctor will have some suggestions when I see him in person soon. I don’t really have another choice but to hope, do I? The good news is that with a diagnosis – no matter how vague – comes the possibility of treatment. Without that tidy diagnosis code that someone at my insurance company can type into a little box, all progress ceases and I look for the next specialist. So with my diagnosis code in-hand and an appointment coming up soon, I choose to be hopeful in spite of the bitter disappointment that has defined my last thirty-four months.

Nacho Mama, MY Mama

Well, an eleventh hour Happy Mother’s Day to all of the moms out there! I’d say Mother’s Day (with Father’s Day as a close second) is the most important of Hallmark’s invented holidays. There are a lot of mothers that deserve thanks and celebration today, and I’d like to honor four here.

First, my sister-in-law Maggie is celebrating her own motherhood for the first time this year, so this Mother’s Day is extra special! A couple of weeks ago she became mom to the sweetest little monkey in the world, my very first nephew Michael. I can’t wait to meet the little man in a couple of weeks! Maybe the little guy will give you the gift of sleep for your first Mother’s Day!

The second mom I celebrate today is my donor’s mother, Denisha. As I’ve said before, I wholeheartedly admire the strength and courage of this wonderful woman. Even on this first year that she celebrates Mother’s Day with one fewer child in her household, she is able to reach out and think of others. Please join me in praying for this gracious woman today. I am beyond delighted to announce that it looks like I’ll be able to meet Denisha this summer (more to come)!

Third, I celebrate Kathy Ritvo, the woman that trained Mucho Macho Man, a strong contender in yesterday’s Kentucky Derby. She was diagnosed with cardiomyopathy in 2001 (I believe at age 32) and became very ill before receiving a heart transplant in 2008. Shortly after her transplant, Kathy was back to doing what she loved. She credits a desire to be there for her children with helping her hang on in those final weeks before a donor was identified. I’m sure every Mother’s Day is quite the occasion for that family.

And most of all, I celebrate my mom today. I celebrate her for staying home with her four children, all of whom provided some significant challenges along the way. I celebrate the woman who attended every soccer game, from Atlanta to Texas and California to Ohio, despite my inability to appreciate that attention and support at the time. I celebrate the woman who just became a grandmother and is going to be the best darn grandmother on this Earth. I celebrate the woman who is so generous and gives so much of her time to charity. And I celebrate the woman who single-handedly saved my life with that first trip to New Jersey in October 2009, who provided and continues to provide constant support and love through some difficult times and who put her life on complete hold to come live with me for many months so that I could maintain some semblance of my life in New Jersey.

I’m sure you all have wonderful reasons to celebrate your mothers this weekend. I’m sure they have all done wonderful things for you throughout your life. But I have to tell you that the best mom of all is NACHO MAMA, it’s MY MAMA. Happy Mother’s Day, Mom. I love you very much.

Mom and me on Christmas night, 2010.