Someone to Steer the Ship

The medical limbo we’ve entered is strange and daunting. These waters are deep, dark and turbulent.

Outside an epic storm rages, tossing my ship and drowning the decks with mountainous waves. Clouds loom and laugh, blocking the light, only visible with the crack and crash of daggered lightning.

Collapsed in the wheelhouse, I watch raindrops pound the windows. My sweet husband is below deck. Every day, he goes to work and then covers my normal duties as well: caring for the children, cooking all the meals, dishes, cleaning, laundry, running errands, and everything else. Right now I only have one job to do. I need to get my ship back on course.

But I don’t know how.

My body is changing in ways I don’t understand. I’ve been sick before. Usually I fight! But this time fighting makes it worse. The more I buck, the more damage I cause. But the more I rest, the more de-conditioned I become.

Often I lie in a puddle, watching the captain’s wheel spin out of control, unable to make any difference at all.

I’m surrounded by angels. I’m keenly aware of that. But they can’t steer—only comfort. I’m still praying for someone in the flesh to wear the captain’s hat.

Many have come: rheumatologists, neurologists, a physical therapist, primary care, pulmonology, gastroenterology, and others. About a dozen now, not counting the ICU. Some just peek in. Others stay a while and some even try on the captain’s hat. But no one is willing or able to stay the course.

I’ll never forget one specialist who looked around, told me there was no storm at all, and walked away. She was supposed to be “the one.” The expert all the other doctors were pointing me to. I had waited months to see her, and her treatment (or lack of treatment) caused me eight long … slow weeks of additional pain and suffering.

I am still stunned that an MD could look me straight in the face after I had lost 40 lbs and all my hair, and tell me there is “nothing wrong with me.” The pictures on the far left and far right were taken five months apart. That hairball is from ONE morning during 3 months of daily hair loss. I’m not a doctor but … Does this seem normal to you?

But we can’t stop. We have to push forward, so we do. There are always more doctors. More waiting and enduring.

In the meantime, my condition is worsening. My joints are in constant pain, even more so when I move. And my muscles are weak and painful. On my bad days, which are becoming more frequent, I am often incapacitated. On my worst days, I struggle to walk (or even waddle … haha), I cannot hold a book or turn pages, and my husband has had to feed me because I am unable to bring a spoon to my mouth. Once I tried grocery shopping, but ended up napping in my driveway afterward because no one was home and I wasn’t strong enough to get out of my car by myself!

Life has become quite an adventure.

Having exhausted our resources that are covered by insurance, and now drowning in medical bills, we’ve resorted to an academic medical center at VCU. One of my doctors made me an appointment there in hopes that they wouldn’t be so dismissive of my case just because I “don’t fit inside a neat little box.”

And …. Wonder of wonder, miracle of miracles! Ladies and gentlemen, we are finally making some progress! Wahoo!

It has been a wild ride, several months in the making, and lots of waiting in between, but I’m starting to assemble a medical team that is willing to dig and give me some answers.

I have a neurologist and rheumatologist, both at VCU, who are running blood work, x-rays, and other tests no one has bothered to do until now. Both agree that we are probably dealing with Ehlers-Danlos Syndrome (EDS). This diagnosis coincidentally matches that of half a dozen other doctors I’ve seen. They just weren’t in specialties where they could help me.

Next, my VCU docs are sending me to see a colleague downtown. He is an Ehlers-Danlos specialist who apparently has a dedicated rehab facility and a physical therapist on staff exclusively for EDS patients. The appointment is in May, but it is worth the wait!

I am getting some help! Finally! And although it feels like it’s been a long time, I’m learning that I’m actually very blessed. It takes many EDS patients several years to get this far. And I didn’t even have to leave my city or state to find help, as many others do. That kind of puts my 9 months since ICU in perspective.

However, they are now telling me that my other two hospital stays, surgery, and other visits to the ER last year might also be related. So perhaps I have been hunting for this diagnosis longer than I thought. I just didn’t realize everything could be connected. If I do in fact have EDS, it might explain A LOT of my health issues. Who knew?

Also, now that VCU is leading the way, my primary care doctor is suddenly onboard, so that totally rocks. He started me on some chronic pain medication … which after a week is doing absolutely nothing, but hey, it’s a start!

As a dear friend recently put it, sometimes we have to be willing to make our body into a living chemistry experiment if we want to find relief. Sad but true. I do not love medication, and somehow I always manage to present with the weirdest (as in 1%) side effects, but I have to be able to function and take care of my family! *le sigh*

So … That storm? Still raging! Me collapsed on the wheel-room floor? Yep.

But the troops are starting to report for duty.

And I swear I see a ray of sunshine on the horizon.

Top: “Vikingship” by Caio Monteiro

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