Tag Archives: ehlers danlos syndrome

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.

Rare Disease in Small Town America

The shower head in mine and Joe’s 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 dumb bells 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 that 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 every day. 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 suffering. 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 that any doctor in small town America is an expert 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 that if it does, I’m poorly equipped to handle the fallout.

Peace, love, and health.

“How are you?” and other tough questions

Joe and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation- it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once said to him (not an exact quote), “I understand Tiffany’s illness, and I think people believe she’s sick. It’s just hard for them to understand when they see her out and she’s smiling and bubbly.”

Hmm. Okay, I’m typically the great empathizer, so I can try to understand what others see. I can understand to a degree that it’s difficult for people to see a 30 something with a loud voice and ridiculous laugh- and reconcile that with the stories they’ve heard about me being ill. I suppose I can understand how it’s all confusing.

But, geez Louise, people! How on earth am I supposed to act? If I’m in public, I try to act like I belong in public. I don’t leave the house if there’s no chance of me staying conscious. When people ask how I’m doing, I say, “Fine” or “The best I can” and I smile. That seems normal, and that’s how I’ve chosen to handle my illness. If I know that I have an event to attend (even if it’s a seemingly ‘no big deal’ event like dinner with friends or an evening basketball game), I prepare the entire day beforehand, so I will seem “fine.” I rest more than normal. I don’t lift anything or do any exercise, so I can protect my joints. I eat foods that aren’t likely to make me sick. There’s a lot of work that goes into appearing “fine.”

The problem with so many people who live in my world of chronic illness is that we never fake being ill- but we’re masters at faking being well. It makes people uncomfortable if I’m honest about how I’m feeling. Think about it. If you say, “Hi, Tiffany. How are you today?” and I reply, “I feel horrible. I just popped in a dislocated elbow, and I’m really nauseous now” then the conversation is awkward for everyone. You suddenly feel like you have to offer me some sort of comfort (You don’t.). I feel awkward, because you’re pitying me. It’s just more difficulty than I want to add into running my errands or joining my husband at a football game.

An acquaintance recently asked if I’m “doing better now.” Well, that’s complicated. In that exact moment, I had been running errands for a bit. I was drenched in sweat and shaky. In that moment, the answer was “no.” In life in general, I have a chronic condition. There will always be good days and bad days. There will more than likely never be a time of being better or worse, because symptoms seem to come in unpredictable waves- the kind of waves that sweep you off your feet and make you eat sand and get salt in your eyes. However, the best response I could give this person- who had all the best intentions- was to say, “I’m trying my best to do better.” Cue the smiling and awkward giggling.

So, for the sake of everyone’s sanity, I’m going to keep giving oversimplified answers to difficult questions. Please, don’t misunderstand. I appreciate that people include me in small talk. I choose to keep my answers simple- even if they don’t accurately describe my current condition. I don’t feel like I’m lying- I’m shielding people from an uncomfortable truth. We all do it to an extent.

To the people who don’t feel like I act “sick enough,” I have no apologies. I’m doing my best to handle this life- same as you. I’m open to questions, because I understand that my reality is quite different from that of my peers. Let me share with you about my world. There are needs and concerns that exist for my chronic illness friends that others our age have never considered. I don’t expect those who don’t live this life to understand. I don’t fault anyone for not understanding either. I’m simply asking for the benefit of the doubt. Trust me, with this body, I’m bound to prove to you that I’m sick if you watch for a bit.

Peace, love, and health, friends.

5 Ways I’m NOT a Total Drain on a Relationship

I’ve spent a lot of time writing about why it’s so hard to be married to someone with a chronic illness. It is. Joe puts up with a lot. He is as affected by my unusual sleep/wake schedule, my unpredictable pain levels, and the general emotional roller coaster of illness as I am. He drives me to appointments, suffers through medical jargon, and hopes for better days right along with me. I’m not trying to minimize his sacrifice, because it is most definitely significant.

Even though I recognize all Joe does for me, I’m sometimes exhausted by people who act like Joe is the holiest of saints for putting up with his crippled, reject wife. I’m aware of the sad glances, the hushed voices, the people who ask Joe how I’m doing- even when I’m standing there- because they assume he’s managing my care. To some degree, I’m glad they see his silent heroism. I’m glad they see that he is a trooper who has dedicated his life to making the best of a bad situation. Seriously, he’s awesome. If you would like to invite him twirl the baton in any parade, I’ll be the person cheering the loudest.

BUT I’m still a human. I’m still a vital part of this relationship. As a matter of fact, if I weren’t here, I sort of think Joe would get lonely. While I think Joe is the most fabulous of the male species (let’s be honest, males are their own distinct species), I think he and I need each other- rather than I simply need him and he kindly and good naturedly puts up with my drama.

1. We have fun together. Believe it or not, my life with Joe is at least 80% Netflix binges, sing alongs while we cook, puppy snuggles (with the dog- that’s not a code or anything), and philosophical discussions that make my eyes cross. The other 20% is less fun, of course. But, seriously, I know people that would love to have an 80% enjoyable life.

2. My brain is mostly functional. Sure, there are brain fog moments (which sometimes add some silly laughter to the 80% of fun in our lives), but for the most part even when I can’t walk, sit up for long, or do basic household chores- I can still think. That means I can help Joe brainstorm for book ideas, teaching techniques, or general household problem solving. I’m not completely useless. There are days that I feel completely useless, but I’m glad I still have a way to contribute.

3. I’m a good listener. Joe and I haven’t kept it a secret that he struggles with depression. I realize that depression is a complicated illness that requires much more than a good listener, and I’m forever thankful for doctors, therapists, and medication. However, I still believe that I have a role in his success despite obstacles. I listen to him. I occasionally offer advice. (Actually, I typically offer advice, but it’s only good advice on occasion.) I love this guy, and I want to do my part to make this life simpler.

4. I love the people he loves. My best advice to anyone in a new relationship is to learn to love who your significant other loves. His parents hold a special place in my heart, and I do all I can to help Joe as he cares for his parents. I’ve developed an affection for Joe’s friends, because it’s easy to love someone who loves my husband and treats him well.

5. I’m a valid excuse. Okay, this one might not be a “good” reason why I’m not a total drain, but it’s true. Here’s the thing- fevers and dislocated joints are a part of my daily existence. That stinks; it really does. BUT if there’s ever anything Joe really doesn’t want to do he can truthfully say, “My wife dislocated her hip and needs some help around the house.” Or “My wife is running a fever and vomiting. I don’t need to leave her.” Granted, he hasn’t utilized those excuses (except when I actually needed someone to stay with me), but I like knowing they’re there. It makes me feel like he’s getting a little something out of being married to me. Edit: Joe says he used me as an excuse once when he was sitting next to a really strange man at a meeting. My apologies to our friend, Twyla, because he left her alone with said unusual man.

I’ll grant you some of my reasoning is silly. I’ll even grant that most of the things on my list should be expected of anyone in a healthy relationship. However, I want the world to see that when you’re married to someone who is disabled, it’s not always a labor of love. Sure, there are bizarre moments that would never happen in a relationship between two able bodied adults, but for the most part we’re normal. Joe didn’t have to sell his soul or his life to get married to this hot mess. Do I regret that I brought illness into his life? Sure, I would totally change it if I could- for both of us. That, however, does not give me an excuse not to be as good of a partner as I am capable of being.

Peace, love, and health, friends.

A Dream is a Wish Your Heart Makes . . . When You’re Falling Apart

Based on that title alone, I’m fairly confident Disney will never ask me to right lyrics for their next great princess anthem. That’s okay, because my heart is set on writing of a different sort entirely. Want to know a secret? I started dreaming of being an author when I was an awkward high school sophomore (who used to lock her bedroom door and play pretend in order to imagine how my newest story should transpire). But . . . dreams are scary. If I tell people and fail miserably, you’re exposed. Everyone knows that you tried and failed. That’s painful, and I’ve felt more than enough pain in my 31 years.

Why am I telling you this now? Because jumping out on a limb is scary enough- why not ask the blog world to watch?!? I have an e-book! I’m a sort of author. It’s on Kindle only, so I haven’t realized the dream of having a physical book to hold in my hands. It was compiled by Joe, because the sick life is complicated and his help is necessary. It’s not the exact dream I imagined, but at the same time I have a certain awareness that something I’ve wanted for a long time is finally happening.

When I became sick, I suffered the loss of so many dreams. I lost the dream of being a mother. (I’ve been naming my future children since I learned to spell.) I left my dream job as a middle school teacher. The life I intended to live slipped away. However, I’m learning that God in His infinite wisdom places new dreams in our hearts- or in my case, He rekindles old dreams that seemed unattainable. When I look at the series of events that led to this moment, I’m amazed.

I married an author– a legit author with 10 books at real, legitimate presses! (Don’t worry. I don’t even aspire to surpass him.) At the time we married, I thought it was cool and respected his accomplishments. I never dreamed that the most painful part of my life (the whole illness/ disability thing) would lead to me wanting to write again. I could have never fathomed that my super author husband (Is that his new super hero name? Super Author!) would encourage me to pursue this inkling of a dream. He’s the person who encourages me through my process (which includes a lot of procrastinating and Netflix) and gives me pep talks when I complain that I’ve sold exactly 2 books in 2 days. He believes in me, and he legitimately knows what he’s talking about (in regard to writing, Tennessee football, church history, and making baked potatoes- beyond that, his advice isn’t worth as much).
While I’m deep in the process of writing completely new material, I’ve released an e-book of my blogs as well as some new material. Why publish previously written blogs?
1. Blog readers have asked for an offline version of blogs to give as a gift to newly diagnosed friends. While this isn’t a hard copy, it’s easily purchasable and able to be sent to anyone with an e-reader or smart phone.
2. This gives me a practice run before my new material is ready for publishing. There have been some serious hiccups in this process, and I’m hoping to get those out of the way now- before my new material releases.
3. If sales go really well, I might be able to buy a Diet Coke at Disney World next year.
Ultimately, I’m new to this process and learning as I go. I’m touched and honored that anyone would purchase my writing. It’s an odd feeling to have someone purchase something that contains some of the rawest parts of your heart. So, thank you for reading my words. Thank you for sharing my heart. Thanks for letting me realize a new dream I never believed could happen.
Peace, love, and health, friends.

Sorry. This post wouldn’t be complete if I didn’t include a link to the book. Thanks for understanding my shameless self- promotion.

Preview my book HERE, please!

The Interesting “Side Effect” of Being Chronically Ill

When you become sick you enter into a secret world you never imagined you would even visit. You enter a world where “dress up days” are for doctors’ appointments, and showers are a luxury rather than a routine. You trade fashionable clothes for pajamas. Girls’ (or Guys’) Night Out is exchanged for a snuggle night with your fur baby and Netflix. (Let’s all take a collective moment to appreciate all that binge watching has brought to our lives . . .)

And all of that . . . well, it sort of stinks. I like yoga pants as much as the next 30 something, but it would be super nice if I were wearing them because I like the look rather than because jeans will cause my hip to dislocate. There are a lot of unfortunate tradeoffs when your life deters into the world of illness, and I won’t lie- I’m typically not a fan of all this life offers.

However, there is one super fantastic thing that happens when you’re chronically ill. Even though I would gladly exchange health for this perk, I’m glad it exists. It’s basically the only redeeming quality. When you are chronically ill . . . you get an extra family. In my first few days and weeks of realizing that illness had become a part of my life, I had never been lonelier. It wasn’t until I saw the phrase “chronic illness” that I realized I had a new identity. I was chronically ill. Armed with that phrase, I began searching for “my people.” Thank God for social media. Thank all that is good and holy that I found Facebook groups for the chronically ill. You know what? No one tells you when you become chronically ill that you inherit an entire family of supporters through Facebook, IG, and Twitter.

I get it. I know there is more to life than social media. I understand the risks of spending your life connected to social media rather than the life that is going on around you. However, the life that is going on around me isn’t terribly glamorous. Today, I’ve kept up with my medicine schedule, taken injections, and worried about my bladder pacemaker. Does that sound like something you wouldn’t want to be distracted from? Yeah, I didn’t think so. Don’t get me wrong. I have a wonderful family and friends. They do all they can to support me. However, it doesn’t change the fact that they haven’t traveled this exact road of illness that I’m experiencing.

Why does it matter? A few months ago I posted to one of my chronic illness support groups that I felt discouraged. I explained to them that I had been trying to go to the gym, and I was accumulating far more injuries than progress. You know what? They GOT it. My online family reassured me that effort counts. They told me success stories- as well as their stories of dismal failures. Of course, every human has experienced health gains and fails, but only the chronic illness community can truly understand the struggle. Only my chronic illness family understands the pain of doing your best and having a body that just won’t cooperate. In that moment- in so many moments- having someone to say, “Yeah, I feel your pain” means infinitely more than advice.

In so many other instances, I’ve seen friends who had a daunting diagnosis, a failed relationship, or a traumatic doctor’s office experience receive support and love from dozens of people who have never met them. We support each other. We empathize. We ultimately strive to hold each other in this painful game of life as well as possible. For that, I am beyond grateful.

Years ago, before my health struggle became blatant, I would have told you I have all the friend and family support I need. I would have told you that it’s impossible to trust friends you have never met face to face. I would have believed that face to face encounters matter more than the relationships we forge through online communities. To some degree, I still believe that. However, I am forever grateful that I have an online family that understands the “sick life.” I love that people I have never met know that I love Disney more than any adult should, so they tag me into cute Disney memes. I appreciate that my odd obsession for sloths hasn’t gone unnoticed by my Facebook friends. I am grateful that I exist in a world that thinks I’m “normal.” The real world thinks I’m little more than the victim of unfortunate circumstances; my online chronic illness family knows that I’m doing my best. They see my struggle because it mirrors their own situation. They know I’m doing my best- even when that means I’m stuck on the couch for days.

Chronic illness bites. It’s a life sentence without parole that I wouldn’t wish on anyone. However, there is one wonderful side effect- online support. It exists, and it makes my days and nights more tolerable. As much as I appreciate my online family, I am fairly confident I’m not the only one. I’m guessing that throughout the community of chronically ill people, there are many who have benefited from the love and support of their new online family. That . . . well, that restores my faith in this chronic life. We have each other to lean on, and I know beyond a shadow of a doubt that really matters.

Have I mentioned that my online family is also great at suggesting binge worthy shows from Netflix? Yeah, that makes them awesome too.

Peace, love, and health, friends. 

Want more Crazy, Chronic Life? The blog has been compiled into an e-book via Amazon. Check it out, please! 💙  Newly Wed and Stuck in Bed- Chronic Illness, You Don’t Know ME!Click here to check it out!

T-5 Days Until Disney World!

I woke up to one of the sounds of summer this morning; Joe was singing. (Let’s all have a brief moment of reverence for the loss of my quiet morning routine.) He is a morning person, and I’ll be honest,  I think God’s sense of humor has never been more evident than it is in the fact that I married a person who sings in the morning. Ugh. All the ughs. All griping aside, the sounds of summer mean two things. 1. The college semester has ended, and Joe is home for the summer. 2. It’s time to go to Disney World. (I promise- I’m really excited about both things.)

We are five days away from going to Disney. Joe is totally packed, and I have refilled all my meds- so essentially we’re ready to go. (Yes, I realize I have to pack clothes, as well, but seriously, Joe would rather have me medicated than wearing clean clothes.) I’ve already written about the preparation process of Disney and general advice (Here.), so I’ll spare you the monotony. However, I want to share the pre-vacation prep schedule with you, because I know I’m not the only one in our community who deals with this.

1. Packing. I hate packing.

Joe is totally packed. I don’t even have enough clothes to be decent for a week. Here’s the struggle. First of all, why are women’s shorts so indecent? Don’t get me wrong; I think women (and men) should dress however they’re comfortable. I’m just not comfortable in shorts that’ll make me feel like I forgot to wear any. Also, there’s the whole wheelchair situation. (For those of you new to the crazy, chronic game, my wheelchair’s name is Snookie, and she’s infinitely more fabulous than I’ll ever be.) Some shorts are just not meant for sitting, and my body was clearly not meant for standing. It’s a colossal conflict of interest on the best days. So, yeah, I have to buy shorts within the next five days in my teeny tiny town. Ick.

2. I’m in energy save mode.

My house could stand to be cleaned. Some of the clothes Joe packed could use ironing. You know what? It’s not happening unless magical fairies bestow me with their abilities. That’s okay. It really is. I’m doing everything I can to reserve my energy for the vacation I’ve been making payments on since last July. I’m sleeping 10+ hours. I’m napping when I want to. I’m generally refusing to do anything that I don’t absolutely have to do. Fortunately, Joe is totally cool with that. He actually requested that I save as much energy as possible, and I’m grateful for the suggestion.

3. Planning for the worst- hoping for the best.

Let me be clear. I have no plans of having a health meltdown while I’m in Disney World. Clearly, Joe and I wouldn’t plan a vacation that we didn’t think I could handle. However, I’m trying to be practical. I’m packing books in case I don’t feel like leaving the room one day. I’ve taken every possible precaution for general comfort. (Here’s to hoping my body doesn’t throw a huge EDS tantrum!) I have rescue meds, cool packs, KT tape, and anything else that might be useful. I’m not being negative. I think my week at Disney will continue to be my favorite week of the year. At the same time, I don’t want to be totally unprepared for something that I knew could possibly happen. Besides, who really wants to buy a $9 bottle of aspirin in the most magical place on earth? If my body decides to throw a curve ball, I’ll be prepared (unlike my Braves . . . smh).

I’m excited- can you tell? I can hardly wait to go. I’m aware that it might not be the type of perfect healthy people imagine, but I can almost guarantee that it’ll be Crazy, Chronic Perfection. At this point, that’s all I ask. If you want to follow me on my Disney journey, feel free to friend me on FB (Click here- be my buddy!). I can also guarantee that I’ll upload pictures all day every day, and I’ll try to keep you informed on the whole traveling with a disability thing too.

Hugs to each of you always!

Peace, love, and health.