Category Archives: Postural Orthostatic Tachycardia Sydrome

This one’s for the teachers who can no longer teach . . .

Back to school time is one of my favorite times of year. I love buying crayons and pencils far more cheaply than any other time. I enjoy the enthusiasm of a second-grade girl picking out the perfect backpack. (In my day, kid, we had Lisa Frank Trapper Keepers, and they were the bomb.com.) I appreciate a clean classroom that shows the tireless efforts of the janitorial staff to prepare the building for young learners. And, I’m borderline obsessed with classroom decorations. (Seriously, parents. If your child has a teacher that has decorated every inch of his/her room, please comment to the teacher on how amazing your child’s learning environment looks. Those decorations are time consuming and EXPENSIVE- and more than likely came out of the teacher’s personal funds.) I have loved this time of year since I was old enough to join my older brother for back to school shopping when we were kids.
Now, though, it’s different. I still love the energy and hopefulness of both teachers and students at the beginning of the year. I still enjoy hearing about first days of school. I’m thrilled that my social media is filled with teacher friends’ pictures of their classroom for this year or parents’ pictures of their little ones headed off for the first day. I even look forward to taking a super obnoxious “First Day of School” picture of my own absent-minded professor (and husband) when he heads back to the classroom. There are aspects of this time of year that make me smile, but the fact remains that this time of year hurts.
I am a teacher- or I was, at least. Mentally, my calendar still runs August to May rather than January to December. I still have nightmares where I’ve missed the first day of school or I have a class of 40 students who won’t listen to anything I say. But, if I’m being honest, I’m also haunted by a dream where I go back to work, and I’m a teacher again. In the dream I keep saying, “I never thought I’d be well enough to do this again.” Then, I wake up, and my shoulder is dislocated and my heart is racing, and I realize I’m still in the same body that disabled me more than four years ago when I taught my last class.
I’m not complaining, really. I’m certainly not trying to put a damper on anyone’s back to school enthusiasm. I’m simply saying to all those who feel especially vulnerable at back to school time, I feel you. I feel your tears. I feel your mourning of unrealized future plans and dreams. Most of all, I get it. I understand how it feels to simultaneously be grateful that you’re able to stay home and focus on your health- all while being enraged that your body has demanded that of you. I understand how it feels to want to hide from your former colleagues because of the shame of “not being able to hack it”- all while hoping they’ll tell you about their classroom experiences so you can live vicariously for a moment. I understand what it means to hurt this time of year- even though it’s one of your favorite times of year.
I don’t have advice on how to handle this hurt, because I’m in the middle of it. I know that it gets better with time- I haven’t openly wept in the back-to-school section of Wal-Mart this year, so that’s progress. I don’t know when or how broken hearts heal. I imagine this will always hurt a little- especially at this time of year. So, while I continue to try ‘to bloom where I’m planted,’ I’ll be the first to admit that where I’m currently planted hurts, but I’m not the only person living that reality. So, former teachers, school employees, and students who can’t return to class for whatever reason this year, I feel your pain, and I’m here. Maybe if we keep our heads down and watch a lot of movies on Lifetime, August will pass quickly and painlessly.
By the way, my absent-minded professor has requested to wear a Spiderman costume for his first day of classes, because he saw it in a Wal-Mart back-to-school commercial. (Goodness, this guy . . .)
Peace, love, and health.

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Overcoming the Fear . . . of New Places

I’ve talked a lot about how chronic illness has changed me. It’s changed everything from my physical appearance to my patience. One thing that continues to surprise me, however, is how much more nervous I am about new experiences now. There’s just so much that could go wrong. It may not- it typically doesn’t go quite as wrong as I imagine it will- but there’s always the very real possibility.
Let me explain using a real-life example from today.
Joe and I decided to visit a church where some local friends attend. Now, before this whole chronic illness and rapidly deteriorating joint situation began, I would have never thought twice about visiting a church. However, I’m a hot mess on any normal day of the week. Add to my normal hot mess having to dress like a real adult (you know, something that isn’t a Disney tshirt and athletic shorts), having to be ready by a certain time, and actually leaving the house before noon (I don’t really get a functional blood pressure until later in the day), and I’m an accident looking for a place to happen.
Today, while walking up the ramp into church (Shout out for an accessible entryway!), my knee quit doing the whole “knee thing.” I crashed into the side of the church to keep from falling. Joe, who is totally used to such shenanigans responded with, “You okay, Margaret?” I, of course, am now convinced the entire congregation thinks I came to church drunk and my name is Margaret. The second faux pas is way worse though. Today was Lord’s Supper/ Communion day at the church. It’s a beautiful service that I’m always humbled to participate in, but leave it to me to turn it into a debacle. As the deacons were passing out the communion wafers, they motioned for me to pass the plate to Joe on my left. Cool . . . except holding anything is complicated with EDS. I overestimated how hard I needed to hold onto the plate, my hand jerked awkwardly, and I spilled the symbolic Body of Christ on the floor in front of the back pew. Joe and I tried to clean it up- but those little wafers fall apart like chalk. And, you guys, it was just bad.
Now, don’t get me wrong. Church was great. No one asked me to leave- or even to stay behind and vacuum under my pew. All in all, I’ll call the day a success. However, that story brings me to this point- taking a chronic illness into public is a bit like taking a rambunctious toddler out among non-toddler humans. You have no clue how it’s going to behave. Yes, we all have socially awkward moments, and today’s mistakes could have happened to an able-bodied person, as well. However, the fact remains that the combination of chronic illness and me has turned me into a one woman wrecking crew.
There was a time when today’s events would have humiliated me. I would have told Joe I was never going back to that church again. However, at this point, I’ve accepted that these things just seem to happen to me. My body is unpredictable, and I doubt that’s going to get better with time. Here are a few things I remind myself to keep from hiding under my bed when social interaction turns into social embarrassment.
I’m not a celebrity.
I’m a somewhat normal 32-year-old woman living in Campbellsville, KY. Paparazzi could not possibly be less interested in me. I’ll never be featured on the cover of US Weekly (Thank goodness.). So, why on earth, do I think that anyone is enormously preoccupied with how I act? You see, in my mind, everything I do is amplified times a million, and I’m convinced the whole world is offended by me. I spend serious time stressing over my inability to sit and stand at the appropriate times during church. I just know that someone is hurt by my seeming irreverence. The truth? Most people probably don’t notice, and those that do are probably more worried about whether anyone is noticing that they’re singing off key or that their breath smells funky. I’m really not that big of a deal.
New experiences are worth the risk.
Today I participated in a beautiful church service. I met new people and visited with others I already knew. I even got a sucker after the children’s service. (I’m not sure how the minister knew I would really enjoy a sucker, and I’m seriously hoping I wasn’t staring at the candy box as though I’d never seen such delicacies before.) The experience of worshiping with other believers, sitting beside my husband during church, and seeing welcoming smiles on the faces of friends and strangers far outweighs any embarrassment I felt. I have yet to have an embarrassing public experience where I felt that my embarrassment wasn’t worth it to do something fun or new (although there have been a couple close calls).
People are generally great.
We hear a lot of stories about the mistreatment of those with invisible disabilities. I get it. There are people in this world who are jerk faces. However, for the most part, people are good. The deacon whose plate of communion wafers I threw in the floor? He chuckled good-naturedly and waved his hand as if to say, “Don’t worry about it.” The people sitting around me who noticed that I didn’t stand for all the opening music? They smiled and nodded and shook my hand when it was the time to do so.
The moral of the story? I’m a mess. That’s okay. People are cool. Keep taking risks- and learn to laugh at your failures along the way.

Peace, love, and health, friends.

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Blooming Where I’m Planted

tiffatvandyDo you see that girl? That’s me- four years ago. (Do you see my awesome collection of stuffed animals? Yeah, my husband specializes in fluffy gift giving.) Four years ago, I participated in an inpatient research study at Vanderbilt University Medical Center (Clinical Research Center) during the 4th of July. I knew that I would never be well enough to participate in cook outs or fireworks, so I spent 11 days in the hospital doing experimental treatment for autonomic disorders. I was new to my POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis and not yet diagnosed with EDS (Ehlers Danlos Syndrome). I was confused and angry. I had left my career as a middle/ high school Spanish teacher nine months prior to this picture. I had no clue who I was or where I was going. In my mind, I had lost my worth as a professional, wife, and friend. But, during the same hospital stay when this picture was taken, there was a faint bit of inspiration that flickered amidst my desperation. I have no idea where I got this phrase- but I’m not especially creative, so I probably read it or heard it on television. But, the phrase that echoed in my mind and heart was, “You have to bloom where you are planted.”

I, like so many others, did not choose to be planted in current circumstances. I did not study to become a sick person. I didn’t marry my husband with hopes of being his disabled wife. However, if we’re all being honest, there are few of us who have written our own way. Life has planted us in some less than ideal places, and we have to decide what to do with the situation. Don’t misinterpret what I’m saying. I’m not going to tell you that all you need to do is smile or have a good attitude. Not at all. There are days when life isn’t a greeting card. There are days when I cry and complain and whine and eat all the junk food. However, in spite of a difficult situation, I choose to bloom.

Yesterday marked four years since the first picture was taken. I can still remember the emotions and pain of that day. I can remember trying to force a smile for a picture- but feeling like the gifts I was posing with were little more than a sympathy offering- little more than flowers at a funeral. Yesterday, I took a new picture- at my first ever book signing. My symptoms hadn’t changed (Has anyone else blacked out when they heard a fire truck’s siren? That was new for me.), but my perspective had.

I’m not handling all this perfectly. I won’t ever be the great inspirational story of the person who overcomes adversity. However, I live my adversity; I accept it, but I also choose to laugh and smile and advocate in spite of it. I’m blooming exactly where I’m planted- even when I wish I could uproot and move to higher ground.

So, how did I get here? I didn’t wake up one day and decide I like chronic illness. I didn’t adopt my “Bloom where I’m planted” mantra and immediately become a blogger. Heck, I didn’t even start giving unforced smiles at that point. But, I started laughing. I started looking for the hilarity of my newfound life circumstances. I slowly changed my thinking from, “I can’t believe this is happening to me” to “You won’t believe what’s happening now!” Regaining my sense of humor and finding my voice, allowed me to bloom.

The past four years have been the most transformational of any I’ve experienced. I have hurt and endured more than I would have believed. However, I’ve become more understanding. I have increased my capacity to love. Ultimately, I’ve become a person I wanted to be- but that girl four years ago could have never believed possible.

I will never be grateful for illness. If I had the ability, I would heal us all in a heartbeat. However, I am grateful that my broken heartedness has healed. I am blooming. It’s not always pretty. (Heck, I’m probably more of a weed or a wildflower than a beautiful, manicured rose.) I am proud of the growth of the past four years, and I look forward to continuing to bloom with all of you.

Peace, love, and health, friends.

Being a Sick Perfectionist

This morning I stood in my bedroom for a full minute trying to wrap my head around the amount of laundry, luggage, and shoes that currently litters the floor. It’s not all mine, but a fair percentage certainly is. Things like this drive me bananas. I like to have everything in its place at all times, but there are times when I lack the energy to put it there.
I’m a perfectionist. Don’t misunderstand- I am ridiculously far from being perfect, but I always have a very clear picture in my mind of how things are supposed to be. When reality doesn’t match my desire, I get stressed. I’ve always been this way. When I was a kid, I wanted my books arranged on the shelf in size order. As an adult, I have very particular views about the direction the toilet paper must turn. (Time out here to say that I have 0 understanding of people who don’t even put the toilet paper on the roll- I’m looking at you, husband!)
Unfortunately, my body can’t always keep up with the demands of my brain, and I have had to let a few things go that I never would have dreamed I would. For example, my towel closet (I think I’m supposed to call it a ‘linen closet,’ but we just aren’t that fancy here.) is a mess. In the perfect world where I have plenty of energy, I would fold everything neatly. Towels would all face the same direction, and there would be a stack of white towels and a stack of multi-color towels. In reality, everything in that closet is clean, and that’s all I can promise. I’ve developed a few general rules to keep this perfectionist as calm as possible- and to keep me from threatening my husband with bodily harm. (See what I mean? The man is an animal. PS- This is NOT my bathroom; it’s his.)

tp
Decide whether the issue is truly a matter of right and wrong.
When you’re bothered by someone’s actions, it can sometimes feel like a personal attack. It typically isn’t. For example, Joe has a strange pile of assorted pajama/ lounge clothes in the corner next to his nightstand. That pile makes me crazy. I can’t conceive ever not folding clothes when I’m not wearing them. There is an illogical part of my brain that tells me sometimes, “He just does this as a passive aggressive attempt to irritate you.” You know what? That’s not the case. The pile of clothes just does not bother him, so he doesn’t think twice about it. If it’s really bothering me, I ask him to minimize the mess, and he has never failed to do so. There isn’t a rule that says “comfy clothes” must be folded when they’re not in use. No one is trying to personally wrong me by not following my imaginary rule. This is not a battle I’m willing to fight.

laundry

Ask for help- even if it doesn’t feel helpful.
My perfectionist tendencies tend to make me cringe when it comes to asking for help. Why? Because the person helping doesn’t do things “right.” Again, these are typically not matters of actual right and wrong- but more matters of how I want things done. I tend to go back and forth between saying, “Joe, will you help me with laundry?” and “Never mind, I’ll do it. I’m picky.” Now, occasionally my concerns have warrant- he has put my “Hang to dry” clothes in the dryer a couple times. But, typically, it’s stuff I can learn to deal with- like folding tshirts down the middle instead of in thirds, as I prefer. Do I really care if I walk around with a crease down the front of my shirt? Probably not.

Laugh at yourself.
Sometimes I have to step back from a situation and laugh at how uptight I’m being. I’ll even ask Joe, “Am I being a little crazy right now?” (He always answers that question way too quickly.) I can recognize how silly it is that I cleaned out a closet before we had friends over to watch the Super Bowl- even though there was absolutely no reason for our guests to look in our closets. I can even laugh at how ridiculous it is that I refuse help when I’m physically incapable of completing a task. That doesn’t make sense- at all.
Friends, if you lean toward being way too worried about insignificant things, the chronic illness life will be especially difficult for you. I’m learning to let some things go. I truly don’t care how things are put in the dishwasher, (Unless my Harry Potter cups are in the bottom- because they will melt, and I won’t be able to celebrate my Hufflepuff-ness daily.) My house will always be clean (or clean-ish), but it will never be spotless. There are probably a few pairs of shoes peeking out from under our bed right now. My kitchen counters probably have a few crumbs on them, and there’s a pile of laundry at the base of the stairs (that lead to the laundry room), because I lack the energy to actually carry clothes downstairs. In spite of all this, I’m sitting on the back porch and typing at the computer without hyperventilating. If I’m learning to deal with this perfectly imperfect life, so can you.

Peace, love, and health.

Birthday, Anniversary, and U2- Oh my!

Who am I? Where am I? Does anyone know what day of the week it is?

Seriously, y’all, we’ve had way too many holidays in the Early household. First, there was Joe’s birthday. He doesn’t ask for much- just a small party with his parents, a day in Louisville for the two of us, and a small party with close friends. Dude wanted 3 celebrations. Now, I can’t judge. I declare the entire month of September as the “Festival of a Tiffany,” so I can’t really begrudge his three celebrations. But . . . by the final celebration, I was sticking potato chips in the dishwasher. Because, when I’m tired that seems like a totally logical place to store chips.

Now, if you’d told me six years ago when Joe and I chose a wedding date that my body would eventually require a couple weeks to recuperate from Joe’s birthday, then I wouldn’t have had the wedding eight days after. But, it’s not legally possible to change my marriage date, so the next weekend was devoted to our anniversary- which happened to involve a U2 concert.

Yikes. Here’s the thing- I love music but, sort of, hate concerts. But, you guys! It was U2! That’s basically a check on everyone’s bucket list, so I had to go. The problem? I was still in recovery mode from Joe’s birthday palooza. Literally, the day before the U2 concert, I was in the recliner all day with insane chest pain. (Note- I’m not being an idiot and refusing to get a medical emergency checked. My chest pain comes from EDS/ POTS, and I have a decent understanding of its source. Over the last six years, I’ve learned this weird body better than I ever thought possible.) There were several points that day when Joe offered to sell our concert tickets on Facebook. But, it was our anniversary trip. I could have cancelled. Perhaps it would have been wise to cancel.

But, to be entirely honest, I’ve lost enough to illness. My marriage has lost enough to illness. If there is a possible way for Joe and I to do something (within reason, of course), then we’re going to do it. Friends, here’s the truth. I didn’t feel great. The concert was outside. U2 came on a couple hours later than expected. It was hot. Joe and I were both tired (him from pushing my wheelchair in 95 degree weather and me from this new phase of never ending chest pain), but we did it. We saw U2! I’ll be honest; if you watch Bono, and don’t get a little emotional at some point- you’re made of steel. I was already a U2 fan (albeit not a superfan), but I have so much more respect for that group and all they stand for. Fan girl shout out- One Republic opened for U2, and they were the bomb.com!

But . . . you know what? The weekend wasn’t over. After the concert there was still the matter of our anniversary. Fortunately, Joe and I decided to forgo the whole gift giving/ fancy dinner thing and instead spend a couple nights in Louisville. That meant I got two nights of 10+ hours sleep (Why do I always sleep better in a hotel? I refuse to admit that it might be the lack of the four-legged bed hog named Zoey that sleeps between Joe and I.) Obviously, when we made our plan, we didn’t know that I was going to be very much on the struggle bus. But, I was so grateful for those two nights of rest.

Here’s my point. Being chronically ill complicates every aspect of life. My marriage is permanently marked by the stain of illness. Joe asks how I’m feeling/ doing every single day- because my health is unfortunately a constant theme. However, Joe and I have made a commitment to having all the fun we can in our time together. Sometimes, that means taking a chance on a concert when I feel like dirt. Other times that means going honky tonking in Nashville the night before a serious doctor’s appointment at Vanderbilt. Friends, I’m far from a relationship/ general life expert, but I still have advice. Take every chance for fun. Put yourself in situations that might be hard but will also be fabulous. Obviously, make sure you’re with someone who will understand if you have to bail, but take the chance that the entire experience could be wonderful.

While I’m giving advice- here’s a little more. I used Snookie (the wheelchair) in order to enjoy the concert. That wasn’t in the original plan, but she became necessary. Once we realized that I was feeling rough on Thursday, we called the venue to see if disabled seating was available. This required us to drive to Louisville a little early in order to swap our tickets. Switching to accessible seating also meant we were on Club Level, so I could go inside and cool off under air conditioning as needed. Also, by taking Snookie to the concert on Friday, I saved what little energy I had available in order to enjoy Saturday/ Sunday in Louisville.

My memories from the U2 concert? Priceless. I wheelchair danced like an idiot. I sang along loudly and off-key with Joe. (We sort of specialize in both loud and off-key singing.) My weekend memories with my husband are just as special. This life is rarely simple, but I am so glad that Joe and I have made enjoying each other a priority. My challenge for each of you is that you take a risk in order to enjoy time with someone special to you. Maybe that’s going on a vacation to a whole new place (if so, I want to hear all about it!) or maybe that’s staying up late to watch a movie that will make you both laugh until your sides hurt. Do what works for you, but take a chance on something fun with someone who matters (family, friends, significant other).

By the way, we’ve already bought tickets for a Bruno Mars concert in Louisville this September. (Thank goodness, the Yum! Center is indoors.) The fun and insanity continue. Live it up, friends.

Peace, love, and health.

I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

A Message of Hope for World Rare Disease Day 2017

It’s World Rare Disease Day, and I feel more encouraged than ever this year. You see, years ago World Rare Disease Day was barely a blip on the social media radar. Few people knew about it, and even fewer cared. I’ve not even eaten lunch yet today, and I’m already seeing #WRDD17 trending on social media. Friends and family members have shared WRDD information- even those who are personally untouched by rare disease. It’s touching and encouraging to see the reach of rare disease advocacy expanding into new corners of my world.

I’m from a rare family. The scope of my immediate family covers multiple rare disease- so much so that my geneticist refers to me as a “geneticist’s treasure.” (In case you’re wondering, being a treasure chest of genetic abnormalities is way more of a curse than a blessing. The whole family would prefer to be uninteresting.)Roughly twenty years ago, my older brother was diagnosed with Wilson’s Disease- a rare genetic disorder which causes copper to build to toxic levels in the body. At the time, (when Internet and social networking were still limited) there was limited information about his disease available and even less support. My parents and brother did what they could to inform themselves, my brother and I, and others in direct contact with my brother, but at the time the spread of information was slow.

A few years passed, and my Mom was diagnosed with Retinitis Pigmentosa- a rare eye disease in which the back wall of the retina is damaged causing limited vision and eventual blindness. Again, she was alone in her diagnosis. The extent of empathy shown to her was the random people who tried to empathize with her condition by telling about that one time they had pink eye. (Lol, seriously, why do people try to empathize using completely unrelated situations?)No doubt there were a lot of lonely and scary days as she tried to process her diagnosis.

Fast forward to now. There are online support groups, research agencies report findings on social media and web sites, organizations like Global Genes make an effort to make patients’ voices heard. The world isn’t quiet as dark and hopeless as it was 15-20 years ago- when having a rare disease meant that you carried a personal responsibility to inform others. Are there still days when it’s frustrating to be rare? Heck, yeah. I imagine there always will be. But as a proud member of a family full of rare genes, I think the future looks bright. There are so many who are blessed with gifts of research, advocacy, and treatment that I believe will be able to help my family and I in the future.

So, on World Rare Disease Day 2017, raise your voice. Speak out. The time for silence is over. The louder our voices are the more likely we are to be heard. Awareness leads to research funding. Research leads to a cure. Care about rare, my friends.

Peace, love, and health.