Downtown in a small town in Oklahoma with buildings of various ages and architectural styles.

The shower head in our bathroom won’t stop dripping. It’s incessant “drip, drip, drip” keeps Joe and I awake at night. I catch myself nodding my head in time with the drips. It has essentially become the metronome of our existence at home. We’ve tried everything to fix it. We turn the shower on and back off again. Sometimes that slows the dripping- other times it gets worse instead. We’ve cleaned the shower head and the on/off lever. Sometimes we push really hard on the nozzle in hopes that
we’ll make the shower completely stop running water. It doesn’t work. Nothing
works.

Now, some of you are saying, “Why don’t you change the shower head?” Well, that’s a fine idea, but it’s not exactly in mine and Joe’s skill set. You see, Joe and I have a variety of gifts and talents – none of which include plumbing. I mean, technically, Joe fixed our sump pump a couple months ago, but he used a couple dumbbells and duct tape to do so. I’m not sure that solitary experience makes him qualified to change out shower fixtures.

I once fixed the toilet chain in a college dorm toilet (seriously, Cumberland
College, why was I fixing my own toilet?) with a paper clip, but again, that’s
hardly professional experience. It has come to this – we need a real, licensed
plumber. That comes with its own set of difficulties. It takes days of sitting
around the house before a person actually shows up for non-emergency water
problems. Real, licensed plumbers are way more expensive than mine and Joe’s
pseudo-expertise. At this point, we have just accepted the shower drips, and that’s a strange quirk of our home.

Why do I think you care about my plumbing woes? Well, I don’t suppose you do. However, the drippy shower has become my constant analogy for living life with a rare disease. My body has several medical “quirks.” The quirks are the background noise for everyday. But, at this point, I don’t have the time, energy, or money to address the issues. Much like my dripping shower faucet, my aches and pains have become such a part of my existence, that while I’m not happy with the situation, I’ve accepted them as part of life. My pain is not adequately managed, and I don’t always deal with it well.

However, small town medicine is about as effective with managing a rare disease as Joe and I are at handling our plumbing situation. I have great doctors, really. I am sure they are great with managing many common illnesses. I feel like if I were a typical patient and went to any of my medical team with strep throat or high cholesterol or any number of other common problems they could handle it beautifully. Let me be clear – my frustration is not directed toward local practitioners. My frustration lies in the fact that awareness is lacking, physician education is lacking, and I’m the one struggling. Unfortunately, when you’re a “zebra” in the medical community, your problems are anything but common.

Even when my complaints are “common” there’s always a rare disease (and its complications) to take into account. The people that are equipped to help me (you know, the ones who have actually heard of my illness) are hours away. They’re in clinics with a two-year waiting list. But, I’ve never really had a medical issue that I’ve thought, “Wow. This should probably be addressed 24 months from now.” That’s not how illness works either. It’s complicated. It really is. For my friends with
complex medical issues, medical care is pretty much a gamble. We are begging to
be heard (drip, drip, drip), but we are blending in with the masses.

I get it. I don’t expect many doctors in small towns in America to be experts in any rare disease.

I’m not blaming doctors for this discrepancy.

I’m simply saying this life is difficult.

My medical issues aren’t easily addressed, and I am tired of being turned away. My illness is a constant dripping that keeps me up at night — praying that at no point does the drip turn into a gush — and knowing if it does, I’m poorly equipped to handle the
fallout.

 Follow this journey on Crazy, Chronic Life

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Nine years ago I started this journey with our third child, but not yet as a nurse — more importantly, as a mom of a child with special needs. Little Wade stayed in the NICU for the first three months of his life. Our lives had been thrown into this world of surgeries and doctors and hospitals and specialists. It was like I had stepped onto another planet with its own language and ways of doing things, completely different than anything I had ever known. So we did what any parent would do and we jumped right in.

Little Wade had a pretty rough start: more than 50 surgeries in the first five years with accompanying hospital stays. He would quit breathing without explanation and we wouldn’t know what to do, except bag him to keep him alive. We’d call the doctors, rush him to the hospital, try different medicines, position him differently, try different foods, anything they said to do, we did. It got so bad that he was life-flighted six times in three months; each time we were told the same thing: “His MRI looks fine.” I had started to guess that it was likely something to do with his head, but since he was non-verbal I could never know for certain. For years we went on like this. His oxygen saturations dropped into the 30s while we frantically bagged him back up. We went to the hospital only to be looked at in pity. I was the “poor special needs mom” who just doesn’t want to let go. And I couldn’t convey to them that yes, he does have special needs, but they only see him when he’s sick. They don’t see him when he’s happy and playing with his toys and grabbing his feet to put in his mouth.

Trying to find answers, we took Wade to Seattle, Cleveland, Dallas, and then back to Houston. We found a neurosurgeon at Texas Children’s who had trained in Chicago, which was our next destination. Reluctantly, we went to see him. It started out like all the other appointments: me explaining in my mom language what was going on. Wade would just quit breathing. He said, “His MRI is unremarkable. It’s what I would expect for someone with Pfeiffer syndrome.” And I said, yes, I understand that. But I’m telling you something is wrong. When he lays down, he’s fine, but when I sit him up he starts crying and pushing back to lay down, he starts hitting his head. I asked if we could do an ICP monitor to see if there’s pressure in his brain. By now, I had surmised through my research that his shunt wasn’t working right and perhaps it was over-draining since his ventricles were always flat on the MRIs. The doctor said sure, why not. So he went into the operating room the next day. When the doctor was walked in he came over to me and said, “If I know one thing, it’s that I don’t know everything and these kids always surprise me. So let’s just see what we find.”

Wade was sent to the PICU for observation while the ICP monitor was in place. A few hours later, the doctor came to check on Wade. He walked in and went to the ICP monitor display at the head of the bed, calculated some numbers and said, “Do you see that number?! That number is 90. His ICP is 90! Normal is 0 to 20, 20 when you’re laughing, but it goes right back down.” He hurried away and we were immediately scheduled for emergency surgery to replace Wade’s shunt.

Being in a hospital can be isolating. You’re in another world, with signs that are not in the language you know, with people who don’t understand you or what you’re going through. Sometimes, or rather, most of the time, you’re the last to know the plan, even though you are the one living it. Many times I sat in his hospital room feeling as if I, myself, were a void, questioning my own value, my own ability to care for and speak for my son because no one asked what I thought.

And then, one day I decided to go to nursing school. I intended to get some letters behind my name so someone would listen to me, so I could be part of my own son’s team, not really fully understanding that I am his team, and the medical team is just the periphery.

Over the years I have became aware that we all have the same goals, but speak three different languages:

First, there is “mad mom” — the version of me when I am crying and mad when trying to tell you there’s something wrong. I can’t tell you why, it’s just a feeling and I know that something is different.

Second, there is the “medical” language — this is the language I learned from other parents. It sounds something like, “I am concerned that Wade’s ICP is increased because we know that despite his MRI being unremarkable, he does have decreased CSF flow in the posterior portion of his brain due to the venous congestion relative to his Pfeiffer syndrome, and this is not the normal disease pathway for hydrocephalus.”

Third, there is the “data” language. This I began to understand as I am now in administration in the hospital. I am learning that I need to be able to “quantify my claims and stratify down as much as possible so we could put numbers to it and justify.”

What I’ve learned through all this is that as an advocate, it’s about taking an experience and translating it into something meaningful for all three areas that intersect patient care: the person(s) receiving care, the person giving care, and the person ensuring we get paid for it and are able to keep the lights on.

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I was once a bright student who left school with top grades. A few years later and I struggle to remember something told five minutes ago .

Two and a half years ago I was struck by a rare neurological disorder called functional neurological disorder (FND), which affects the central nervous system and stops the brain from sending the correct signals to the body.

One of my many symptoms from this disorder is short-term memory loss. I can completely forget something said to me even minutes ago. I will sometimes argue with someone that they didn’t even tell me. For someone who once was academically bright it causes great amounts of frustration.

Imagine being able to go from memorizing a whole math course to not even being able to remember where your partner, who left two minutes ago, was going. There have been times when I’ve forgotten he went out at all and have searched the house for him.

Friends, family, and medical professionals even find it hard to comprehend how a young person at the age of 23 can have the memory of an elderly person. In fact, my grandparents have better memories than I do. Can you imagine that?

Not only is memory loss incredibly frustrating, but it also often puts me in danger. I often forget that food is in the oven, only realizing when the house is filling with smoke and the alarm is going off. This makes cooking something dangerous when it should be an easy skill for someone my age.

Due to my age people don’t understand just how bad it affects me, and I’ve had on several occasions people think I’m lying when I say I can’t remember, which only causes further upset.

It really is an isolating and frustrating symptom, one I wouldn’t wish on anyone. I only hope this story goes some way in helping people understand that age doesn’t stop an illness’ takeover.

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Dear Rascal Flatts,

The song “Stand” and the lyrics “You feel like a candle in a hurricane, just like a picture in a broken frame, alone and helpless, like you’ve lost your fight, but you’ll be all right, you’ll be all right,” is just one example of how your musical group composed a verse that almost anyone can relate to. It is undoubtedly challenging to keep my inner light illuminated when I feel like my body is defenseless, unreliable, and broken. The broken frame is my lungs. My lungs have decided to form holes and bone tissue, due to dendritic pulmonary ossification. My “frame” (lungs) may be broken, but my overall picture (my personality, my spunk, and my witty self) is not broken. I joke that the calcification process going on in my lungs could happen where I actually need calcium, like in my bones and teeth. My crackled breathing is audible to the point where I think I could be apart of a Rice Krispies commercial. When the slogan comes on, I can “crackle” in “Snap, Crackle, Pop, Rice Krispies.” I have also graciously accepted the nickname “Wheezy” from my neighbor, as exercise brings out the wheezes. Just because one aspect of myself is not up to par, does not mean the rest of myself has to be weighed down. 

I try my best to not get bogged down by the medical terminology. I try to leave behind the doctor talk at the doctor’s office, but sometimes I find it in the rearview window, trailing me on my way home. I am also a pioneer and guinea pig for those who may have this disease in the future. There is nothing more intimidating and knee-wobbling to find out there are not any profound cases that can shed a light on my rare diagnosis. I wish I could find the words to muster up the helplessness I feel when I’m reminded of the lack of funding or the lack of effective treatment for my lung disease, but words don’t justify it. I also know what it’s like to want to give up because tests and scans are coming back abnormal. Symptoms have rooted themselves in my daily schedule, and doctors don’t have simply answers to give to me. My routine in the morning is definitely different than the past. It is now comprised of inhalers, prednisone, and nebulizer treatments.

I have walked the halls of hospitals at nightfall to distance myself from feeling like I’ve lost my fight. I have asked for the curtains and shades to pulled up at midnight so I could see the city lights and riverside view from my room. I may not be in control of the course of my lung disease, but I am in control of what type of beauty I surround myself with. City lights and a wedge of river out my hospital window may not seem like much at all to some, but it is a reminder of life outside the hospital. If you haven’t looked outside a window at midnight with lights mirroring off the water, then I suggest you find a friend and take a trip to do so. A window may just be a frame with a piece of glass, but it is a window to a picture that is ever-changing with the seasons. I may be a rare and weird unicorn in the medical journals, as one of my doctors once told me, but I’ll be looking for the day when my symptoms become a minor detail of the day, instead of the main idea. And that is when I will be completely all right.

Sincerely,

Angie, a rare lung disease warrior and Rascal Flatts fan

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Lately, I have been thinking about how to transform healthcare advocacy into an act of love, and as an invitation to meet allies.

“Advocate” – a person who pleads for or in behalf of another.

Both my kids have rare diseases; both situations require radical acts of love and advocacy.

My youngest has a genetic disorder that results in periodic flare-ups and unremitting symptoms that range from Crohn’s-like ulcers in her mouth and belly to swollen, aching joints, high fevers, fatigue, wasting, uveitis, swollen lymph nodes, to merciless pain.

Her illness is capricious in its when’s, how’s, and why’s and can hold our entire
family captive to the swathe it cuts across childhood.

And yet, we all choose hope and we find allies in each day. We find allies in each new specialty care clinic, each new lab, each new intake area. We take the chance to look for love and allies.

I realized early on in advocating for a child with rare disease, (which happens to affect less than one in a million) that I would be writing my own “how-to”
book. There was no “what to expect” book, with those guideposts that served me
well in the era before the illness took root. There was no chapter for managing uncontrollable pain, holidays missed to sky-high fevers and illness, movies unwatched because of ocular issues, and regular ER trips for the flares that come out of nowhere.

I have all kinds of tricks now. I know how to find clinical trials, doctors publishing in the arcane corner of the medical world relevant to her illness, other families living with similar illnesses, and complementary and integrative approaches to care. When insurance says “no,” it’s merely the beginning. I can talk about L1 receptors, cytokines, and cellular level inflammatory processes. I can find the needle in the haystack when it comes to providers or researchers who may help my daughter. I don’t flinch in the face of the regular fevers that won’t respond to analgesics and go from normal to over 105-degrees in minutes. I just get the prednisone and ready ourselves for the ED.

I am tenacious by nature and a fierce believer in justice. Even prior to my own child’s illness I had dedicated my career to advocating for increased access to medical care for low-income communities. A career that I engage in with love. For in every health disparity, there is an opportunity to form an alliance, to right a wrong, to make the path to wellness more available.

Even so, I was not ready for what lay before me. The mountains to be climbed to get medical accommodations at the school, the relentlessness of rejections by health insurance for necessary medications and testing, the time required to coordinate more than a dozen doctors working out of three medical centers, the psychologists and therapists who need regular medical updates, and the real difficulty in effectively managing pediatric pain. It has been an exhausting, illuminating, and humbling lifestyle to assume.

If we don’t look for magic we won’t find it.

I think it’s the same with allies when we advocate. I realized all to often “advocate” becomes “adversary” in this damaged system of healthcare.

I seek providers who will serve as allies and champions, and there have been so many. I learned early on to build the team out of providers who share moments of gratitude as well as expertise – and who put my child at the center of care. These are providers who listen to this small person, because she is the ultimate expert on her own body. And when they fail to listen — when they fail to respect she is the expert in her own experience of illness — they fail to be her ally and they fail to be her advocate. When they fail to serve as an ally in healing, I quietly dismiss them from her team of caregivers. There is room for respectful differences of opinions, but there is no room for an adversary on the team.

This team of caregivers are there to care for this small expert by honoring her experience of an illness that steals a portion of her childhood.

Advocates work on behalf of others and allies formally cooperate with one another. I
don’t expect cures or answers at this point; it’s not that kind of an illness.

But I do expect, and am glad to have found allies in healing.

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We are waiting for Red’s disease to get worse. For progression. For decline. We are waiting for dialysis and transplant, for worsening. Years, it will take years of slow decline to get to our worst nightmare. Some say, “Be grateful for the time you have now, when she is stable.” Some say, “Focus on the positive,” “She’s happy and living ‘normally.’” Others say, “They may find a cure!” for my daughter’s incurable rare disease.

At this moment, I feel like saying, “Enough.”

Four years post diagnosis and Red is stable. We’re out of major crisis, but still in the woods, and it is at this point that my mental rigor is dismantled. My capacity has shortened and depression has taken over. It seems to me this is the most socially unacceptable time to experience any signs of mental health disorder, when things are trotting along. Friends don’t register your life as “tragic” anymore. Family sees you moving through your routine. Work colleagues see lesser absences for hospital stays. By any measure of tragedy, things are OK, well, even … better.

So why has depression perched on my shoulders?

Why do I feel frozen as I lay in bed?

Why does getting through my morning routine feel like the equivalent of running a marathon?

I still have not found a way to live “in the in between.” In between this bout of stability and the next hospitalization. In between this month of normal numbers and the next medical crash. In between this set of milestones and the next round of set backs. In between her turning 4 years old and not knowing when her illness will take over.

So what do parents of critically ill children do in the in between? How do we wait for the disease to grip her tighter and attempt to suffocate her childhood? How will we relinquish control and surrender our child to progressive disease?

In the quiet months of Red’s stability, my spirit has completely retreated to the safe and warm corners of my mind. Fully withdrawn and disengaged, it feels easier to live in between. It can make things easier while I have to stand by and watch my daughter’s condition slowly decline, and it feels easier to prepare for the inevitable war that is to come after all these long, drawn out battles.

Being on perpetual stand-by can be exhausting and mentally draining. In the years since Red’s diagnosis, I have seen many selves emerge as her mother. I have been strong, relentless, empowered and I have been completely and utterly torn and devastated by her disease.

Parenting “in between” means you swing your legs over the side of your bed and let your feet touch the ground. You stand yourself up and walk as slowly as you need in order to get your body situated on autopilot. You get through your day. You do it all over again. You push through the depression and exhaustion of the in between.

So hold on, for however long it takes, hold on. Few will understand the path, and fewer will understand the pain. You can handle crisis and tragedy, and so dear parent of a rare child, you can handle the dark times of parenting “in between.”

But do it quickly, her war horse is needed.

Follow this journey on My Rare Child

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