Tag Archives: Ehler Danlos Syndrome

The Stages of Falling- Crash, Bang, Pow, and Ouch!

Here’s a truth I don’t care to admit- I spend most of the time that I’m upright hoping that I’ll stay that way. The reality of worsening and limited mobility is that I’m forever afraid of falling. I joke that any day I’ve managed to keep my butt above my ankles is dang good day. To be honest, that’s a pretty high standard for success in this body.

Literally minutes before typing this I lost my balance while bending down to open a container and fell onto my ample behind. Thank goodness for its, um, padding. While lying in the floor deciding if I needed my husband to come help me out of said floor, I started thinking about the stages of falling, and I quickly decided my chronic illness friends would possibly identify with my struggle.

Stage 1: Confidence

I haven’t walked around with total confidence in a while. I always feel like I’m testing out my joints and hoping for the best when I take a step (or, God forbid, walk down steps!). However, it’s always in the moments that I forget how careful I have to be with janky joints that I end up biting the dust. Stage 1 is the most unassuming of all the stages. It’s also the most unavoidable- but, seriously, who wants to avoid having confidence?

Stage 2: “Oh crap!”

Stage 2 is that awful moment when you realize your plan has gone awry. It feels like the sudden onset of a stomach virus coupled with the awful realization that you’re naked. Lovely visual, right? The “Oh crap!” moment is worse than any injury, because your brain moves at lightning fast speed. In the split second I think I’m falling I manage to have each of the following thoughts. “Who’s watching?” “What am I going to hurt?” (Side note- I have a rather expensive bladder pacemaker inserted in my left hip, so I’m very careful to never land on it if I can help it.) “Am I wearing a dress- is there any chance of me flashing my unmentionables to the world?” “Don’t say anything crude or vulgar!” (The struggle is real, friends. When you frequently dislocate joints or tumble onto the ground you have to develop a list of family friendly interjections. My current favorite is, “Holy Potato!”) In the .04 seconds that I realize an impending crash, my entire life- or at least my entire current situation- flashes before my eyes.

Stage 3: Crash! Bang! Pow!

Occasionally, the “Oh crap” stage doesn’t lead to a fall. Occasionally, I recover, look around to see who noticed, and act like nothing ever happened. Typically, though, Stage 2 leads to Stage 3. Stage 3 is that moment when you hit the floor. I’ve learned to land on the most padded part of my body- my behind. It’s not nearly as noisy, and there’s not much there to break (assuming I avoid that left hip) or dislocate. The most important part of Stage 3 is avoiding injury as much as possible.

Stage 4: The assessment.

This is the part after you’ve hit the floor when you have to decide if you’ve wounded your body or your pride. It’s tough to tell. The waves of embarrassment, hilarity, and adrenaline hit much harder than a physical injury. However, before you jump up from your prostrate position (Seriously, there’s no “jumping” on these joints.), you have to take an inventory of injuries. Have I hit my head? No. Has anything dislocated? Probably. Is it fixable without an ER trip? More than likely.

Stage 5: Keep moving forward.

There was a time when I grieved over every stumble. I worried that someone had seen my body admit that it’s ill. You know what? I’m over it now. I make every effort not to fall in public. However, if it happens, I’ll get up- as soon as I’m able- and keep moving forward. Chronic illness and disability have so many limitations, and I refuse to let my own pride become one of those constraints. For now, I’ll laugh when I’m able- because, come on, sprawling in the floor is a little bit funny- and cry when I must.

Peace, love, and health, friends.

This is my current EDS/ falling on my booty anthem- Unsteady

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. 

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4 Reasons Why Everyone with a Chronic Illness Needs a Pet

zoeyZoey2A few days ago I had a meltdown. I’m not proud of it, but it happened. I had one of those “nothing is going right- why does everything have to be so difficult?” days, and it ended with emotions that poured out of my eyes. I laid on my bed last night and threw myself a really ugly pity party. Somewhere during this tantrum, I opened my eyes to see my almost eleven year old shih tzu, Zoey, staring at me. When we locked eyes, she jumped on my chest and started licking my tears away. That was neither my finest nor most sanitary moment, but it warmed my heart on the most basic level. Pets love us- even when we’re throwing ourselves an unwarranted tantrum. My sweet Zoey laid with me the rest of the evening and into the next morning, because she loves in my spite of my dramatic self.

When you live with a chronic illness, life is difficult. Every day is difficult. It helps to have a buddy that doesn’t expect you to explain yourself. My Zoey-pup has led me to this conclusion- every person with a chronic illness needs a pet. Here’s why.

Pets give us a purpose. 

I realize in writing this I’m ignoring the fact that many of those in my chronic illness family have children- and from what I hear, they’re demanding little boogers. (I hear you also have to pay for their clothes and education. My dog requires none of those things. Thank goodness!) For me, though, I have a husband who gets up and goes to work every morning. While I think that’s awesome (it keeps us off the street), it also makes me lonely. Before Zoey came to live with me (She lived with my mom until about 3 years ago), I had absolutely no reason to get out of bed. I would lie in bed until time for Joe to come home from work. I was sad and directionless and sick- those all felt like good reasons to stay in bed. Now, no matter how bad I feel I know I have to get up to walk Zoey. Some days it’s a hassle. My grumpy, elderly pup will take her sweet time while I lean against a porch rail trying not to faint while she’s finding the perfect spot to relieve herself. (Side note- What exactly are dogs sniffing for when they’re looking for a place to use the restroom? How do they know it’s the “right” spot? I’ll Google this later.) However, I would never make her suffer because I feel bad- even if it means following her around the back yard for ten minutes while she searches for THE spot.

 

Pets are intuitive. 

Zoey understands my body better than I do. It’s not unusual for her to circle my feet and whine seconds before I start feeling like I’m going to faint. No, she isn’t trained to do that; she just picks up on what is happening. If I’m lying on the couch with an injury (dislocated hip, knee cap, shoulder, etc), Zoey wants to lay on whatever part is affected. She’s my own personal ten pound heating pad.

Years ago, when I first began having symptoms, Zoey came into my life. My mom and step dad knew I needed a buddy, and there was Zoey. She was a ridiculous little fur ball in a cage at an outdoor flea market. She kept biting her brother’s ear while he tried to sleep. To be honest, she reminded me of my own reckless enthusiasm when I wanted my brother to pay attention to me. I knew I wanted her to come home with me. Since that day, Zoey has somehow understood that she’s supposed to take care of me. She’s laid with me after surgeries and procedures. She’s helped me check for burglars. (Okay, technically, she doesn’t check for burglars, but I know if she sees someone she doesn’t know she’ll bark excitedly and wag her tail- so I make her go around corners to check for the unknown before me.) She’s made me laugh and licked away my tears more times than I can count. To be ten pounds of fluff and attitude, she totally gets me.

 

Pets keep life interesting.

Zoey has a million lovely qualities. She’s also a grumpy little monster. Seriously, she is not to be provoked; I have scars. In spite of her sweetness, she does some quirky things. Once I dropped her off at the kennel while I went to an out of town doctor’s appointment, and she bit the kennel owner and refused to come out of her cage. The owner was sending me texts that made it sound as though I had left a tiger in her care rather than a 10 lb fluff. Oops. My bad. You never know what she’s going to do.When you live the sick life, days can get long and boring.

If it weren’t for my pet, the most exciting or noteworthy part of my day might be medical. Zoey keeps life interesting. Sure- she sometimes she bites Joe or me, and I would prefer she refrain from such activities. Let’s be honest, though- her tiny teeth do a lot less damage than a lot of my maladies. Pets are great entertainment.

 

Pets are the best companions.  

When I’m upset for no good reason, Joe wants me to explain what is wrong with me (or he’s totally oblivious, because he can’t understand my variation of female emotions- he’s a male). Zoey doesn’t want an explanation; she just wants me to feel better. Some days that’s more important. Joe is my partner- the other half of my team, but Zoey is the best little friend anyone could ever have. Whether she’s trying to heal me, bite me, or soothe my drama-fest, she’s perfect.

 

Having said all that, this little fluff turns eleven tomorrow (April 7th), and I’m pretty sure she deserves the biggest puppy party ever. (She’s not very friendly with other dogs, though, so it’s a human only puppy party.) She makes my life more fun, and I’m so wonderfully grateful for that.

Peace, love, and health, friends.

Oh yeah, and puppy kisses from Zoey.

What $50 Buys When You Have a Rare Disease/ Disorder

About a year ago, I went to a new doctor. My hip was dislocating, and my primary doctor thought I needed to see a specialist. The specialist was the “new doctor,” and let’s just say I was not impressed. I waited a couple weeks to see the doctor (by which point my hip pain went from excruciating to simply quite painful); I paid my $50 co-pay to see the specialist. I had the x-rays and preliminary tests the doctor requested. I followed the rules. I was as prepared as I could possibly be as a patient. I went into that appointment feeling as though I was holding up my end of the bargain wonderfully.

I wasn’t prepared for the doctor to fail me completely. Here’s what happened. The doctor talked to me for five minutes and made assumptions. When I told him I had a rare disorder called Ehlers-Danlos Syndrome, he nodded and said he had researched it. I told him my hip seemed to be coming out of socket. There was horrible pain and instability. When the hip was out of socket one leg was longer than the other, and the foot of the longer leg was turned to the side and would not face the front. The doctor chuckled and said it was impossible that I had handled a dislocation without going to the ER.

Have you even met me? I have EDS! I pop dislocations back into place daily. I’m asking for help keeping this darn hip in place- not asking for your judgment about whether or not this hip is actually dislocating. The doctor went on to tell me that during his research of “Eglers-Dallos” (What? Seriously, dude? No one even gave you a pronunciation guide?) he had never come across any data that showed that patients had pain or dislocation associated with the condition. He told me that if I really felt I was in that much pain he couldn’t help me, and the cause could be more psychological than physical pain. Seriously, Dr. Deficient, just because you don’t understand my illness, that doesn’t mean that I am faking it- or that it’s all in my head. (By the way, even if it were all in my head, you have a responsibility to me as your patient to assist me in getting help.) It means you need to educate yourself more. It at least means you need to do some serious work on your bedside manner. Did you skip that class in medical school? Are you kidding me? I paid fifty dollars to be laughed at and shamed?

Herein lies the problem for those of us with rare diseases/ disorders. Few doctors are knowledgeable about our illness. We are forced to play a guessing game of which doctor will give us adequate care- and which doctors will brush us off because they aren’t educated in our condition. Ehlers-Danlos Syndrome is somewhat rare- and proper physician education about the syndrome is even rarer. I understand that. I don’t expect every single doctor to understand my condition. However, I do expect all medical professionals to listen to me. Trust me to be an advocate for my condition. It is completely fine with me if you Google my disorder. I promise not to judge you for not knowing. However, if you make me feel ridiculous and silly when I am trying to explain my condition to you- that’s not okay.

Here’s the embarrassing part of this story- I didn’t say a word. I felt like he was accusing me of lying or at least exaggerating, and I was so ashamed that I couldn’t plead my own case. Even though I at no point wanted or requested pain medication, I felt as though this doctor believed I was just seeking narcotics. I was embarrassed. I felt criminalized. I left that appointment and sat in my car and cried like some kind of victim. I allowed that to happen. I am educated about my disorder, and I had every right to stand up for myself and tell that doctor that his “Eglers Dallos” research was wrong. But I didn’t. I nodded my head and said “thank you” and “I’m sorry” then cried in my car. Stupid. Just stupid.

For those of us with rare disorders, this is what we can expect in exchange for our co-pay, and that is not acceptable. This is why World Rare Disease Day matters so much to me and others within the rare disease community. On this day, we get to make a little noise for the disorders that few in the medical community discuss. We get to inform those on our social media and in our day to day lives what our disorders are all about. We get to spread awareness, so that in the future maybe other sufferers of our illness (and other rare diseases) won’t feel like a victim due to their doctor’s lack of understanding.

I am not bashing the medical community in the least. I have had the pleasure of meeting some fantastic medical professionals- doctors, nurses, physician’s assistants, etc. I am so grateful for the caring and considerate people I have met through various medical procedures and appointments. I am saying, however, that we as patients have to stand up and be our own advocates. Every doctor has a responsibility to listen to us- and every member of the rare disease community has a responsibility to make themselves heard. So, do me a favor, friends. This World Rare Disease Day (February 29, 2016) educate a friend, a family member, or your social media followers about a rare disease that is near and dear to your heart. I’m not asking that you share about Ehlers- Danlos Syndrome specifically. Share about Wilson’s Disease. Share about Charcot- Marie- Tooth Disease. Share about Retinitis Pigmentosa. Share about a disease that affects someone you love, because that person you love deserves a lot more understanding than what they’re currently getting for their co-pay.

Peace, love, and health.

** By the way, friends, I was eventually vindicated for my terrible doctor experience. Another specialist ordered an MRI of my hip. She found that my hip labrum had degenerated and was not capable of keeping the joint in socket correctly. Surprisingly, this new doctor went to medical school with Dr. Deficiency (not his real name- that was just the kindest thing I could think to call him) and sent him a report of her findings.

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I can’t. I’m raising a chronic illness.

It’s only fair that I begin this in the most appropriate and reverent manner possible, so I’ll begin by saying that moms are rock stars. Seriously, if you’ve stuck with and cared for  a child through all of their horrible ages and phases, you’re a hero. I don’t know how you did it; I can barely remember to put out fresh water for my dog, Zoey. If you’re struggling with a chronic illness and still managed to take care of a child (or, good grief, multiple children), you’re a super human, and I have total respect for all you do. So please, momma friends, don’t judge me to harshly for referring to myself as a “mom.” I realize I don’t know your struggle.

Now . . . having said all that, I don’t fit into any logical groups for people my age. Working women? Nope. My main job is the care and management of my health- and keeping Joe from looking really mismatched and disheveled. Motherhood groups? Yeah, I have a dog- no tiny humans. However, the more time I spend around mothers the more I realize that my chronic illness acts remarkably like a toddler. (Don’t take this analogy too far, folks. A child is by no means a disability- I’m just having a little fun here.) Here are things I’ve heard mommas say lately that I’ve oddly identified with from my life of “raising my chronic illness”.

I would have loved to come, but [insert cutesy toddler name] needed a nap. She just won’t behave without one.

I feel ya, girl. The last time I didn’t give my chronic illness (and, you know, me too since we’re connected) a nap before we went out among people, I ended up whimpering in a bathroom floor. I also missed the event, because my symptoms were having a diva moment. My illness is a bit of a monster like that. If I don’t let it rest before we venture into public, it will throw a tantrum that rivals any sleepy toddler’s meltdown.

For the last UT home football game (my husband, Joe, is a SUPER FAN and season ticket holder), Joe and I met friends for lunch before the game . . . and by the time lunch was over, I was FINISHED. I was tired, my chest hurt, and I felt like I could cry if anyone looked at me. I ended up giving away my ticket and going back to the hotel to take a nap instead. Have you ever heard of anyone over the age of 5 who misses events they’ve looked forward to because they need a nap? Nope, me neither. Thanks, chronic illness. You couldn’t behave for a couple hours.

I can’t stay out late. The baby will get restless.

Yep. Anything longer than half an hour, and I’m a wiggly mess. I suppose this is a little different than taking a toddler into public. I mean, toddlers struggle because they have a short attention span. I don’t exactly have a remarkable attention span, but the real problem is sitting still. If I’m sitting for more than half an hour, my blood will pool, and I’ll feel faint. My ribs will shift, and I’ll feel like I can’t breathe. I’m a mess. You know those kids at church or the movies that pace back and forth/ up and down the aisles? I’m one step away from being right behind them.

Recently, Joe and I met a friend (a fellow POTSie) in downtown Nashville to listen to music. She and I (and our illnesses) behaved beautifully through dinner. When we tried to listen to music, we were both falling asleep in the booth. My poor husband looked like he had drugged two women and brought them out for the evening. Nope. Just tired. So tired.

Just as we were going out the door, she threw up all over me!

Ughhhh . . . yeah, I get it. Babies can be gross sometimes, so can chronic illnesses. For every time a mother has gotten ready to go somewhere and been unexpectedly covered in a smelly bodily fluid brought forth by her toddler, yeah, it’s happened to me too- except, you know, it was my own body that was expelling its contents. Chronic illnesses are messy and unpredictable- just like babies.

Once, Joe’s dad was giving the commencement address at a graduation ceremony, and Joe was supposed to introduce his dad and give the opening prayer. What did I do? I started projectile vomiting minutes before they were both going on stage. Fortunately, I was able to regroup, drink some water, and make it through. But right up until the minute the program started everyone was more worried about my diva disorder than the event we were there to celebrate. Yeah, vomit ruins everything. It just does.

Can you tell I’ve had fun coming up with similarities between my illness and a cranky toddler?

Of course, there are a number of reasons that I would rather raise the crankiest toddler than deal with illness, but clearly I haven’t been given that choice. I mean, toddlers have their redeeming qualities- they’re cute; they say funny things; they will likely grow into something in which you can take pride. I have serious doubts that my illness will ever do any of those things. For now, though, I’m okay with laughing at the similarities between the two. So, the reason I can’t go to the movies or on a long road trip? I can’t. I’m raising a chronic illness.

Peace, love, and health friends.

Wheelchair Etiquette- The Continued Saga (and Trevails) of Tiffany and Snooki

Every time I spend a couple days on wheels (AKA in my wheelchair, Snooki) I realize that the world is sadly lacking in basic wheelchair etiquette. Now, I’m not going to attempt to answer questions like, “Do I hold the door for someone in a wheelchair?” or “If they seem to be struggling, should I offer to help?” The truth is- I have no idea. We are as varied and different as the same number of able-bodied people, so how could I possibly know? (But, please, if you see me struggling with a door whether in a wheelchair or not, please help! I’m probably deciding if entering/ exiting is really worth dislocating my shoulder.) However, there are apparently a few things that need cleared up to make my (and others’) rolling days a little simpler and possibly less frustrating. Below you will find a few helpful hints about what not to do upon seeing someone in a wheelchair.

Hint #1- Do not touch the wheelchair user.

Just don’t do it. Unless you are shaking hands, giving a high five, or fist bumping . . . there’s just no reason to touch a person you do not know. Let’s think of it this way- You walk into a room. Everyone else is taller than you (Fun wheelchair fact- you’re stuck at butt height to all adults when you’re in a wheelchair. Lovely, just lovely.). Now everyone starts patting your head, bumping into your legs, and tickling your tummy (Yes, that has actually happened to me.). My guess is you would start feeling a little claustrophobic and ultimately disdained. It’s hard to feel as though you’re on equal footing with the rest of the adults of the world, when the other adults of the world treat you like a particularly ugly puppy.

Hint #2- Do not talk in funny voices to the wheelchair user.

Again, there are exceptions. For example, my voice is just funny, in general. (Oddly reminiscent of Velma from “Scooby Doo” . . .) That would not keep me from speaking to a person in a wheelchair, obviously. If a normal adult conversation necessitates using a funny voice, by all means, please do. We wheelchair riders (much like “normal” walking folk- *gasp*) enjoy a silly story. What I am talking about is using a voice that isn’t meant for adults with an adult simply because he or she is in a wheelchair. Case in point, while rolling into a football stadium with my husband, a security guard spoke to me in a (not at all impressive) Donald Duck voice. It some sort of- “Quackety-quack. I bet you’re not *quack-quack* sneaking anything in! Quack!” Now friends, tell me how that is EVER appropriate. I mean, it’s strange enough that he would assume that because I’m in a wheelchair I wouldn’t possibly think to sneak in contraband. (For the record, I was NOT sneaking in contraband though.) It’s even more strange that he used a duck voice with an adult. Again, it’s hard to feel like you’re not inferior to the walking world when the walking world is using baby talk to speak with you.

Hint #3- Do not attempt to diagnose the wheelchair user.

This is a tough one. To be entirely honest, before I became a part time Snooki user, I probably assumed that people in wheelchairs could not walk at all. I, on the contrary, go for walks in my neighborhood, walk to get my groceries, walk inside my house, but use a wheelchair for long distances or particularly unfortunate days health wise. I realize this is confusing, but I also realize this most certainly does not mean I am faking my need for the Snooks. Not long ago while using the wheelchair, I stood up to walk into the bathroom (because opening a bathroom door while trying propel myself through it will most certainly end in a dislocated shoulder). A young man 10-15 feet away said, “Oh my God! She can walk! She was just using a wheelchair, but she can actually walk.” This doesn’t make me angry; it’s not like he insisted I crawl to the bathroom. It’s just awkward. Yes, I can walk; the walk to the bathroom is perfectly manageable for me. It isn’t manageable for all people using a wheelchair. Much like some people who can walk long distances are capable of running a 5K and other aren’t. What frustrates me, though, is that people who are not using a wheelchair somehow feel qualified to comment on who should and should not use a wheelchair- as though being able to walk qualifies them for such assumptions. What if people in wheelchairs started calling out everyone with a limp or who stumbles? “Hey, hey you? You stumbled. You aren’t good at walking. I’m in a wheelchair, so I know this. You should be in a wheelchair too!” See what I mean? Being in a wheelchair does not make me qualified to diagnose a walker as incapable of walking, and being a walker does not make someone capable of diagnosing a wheelchair user as not needing the wheelchair.

Hint #4- Teach your children that people in wheelchairs are, um, people (who happen to use wheelchairs).

One of the most awkward moments I face in a wheelchair is when children are involved. You see, I don’t mind at all when a child says, “What’s wrong with you?” or “Why are you using a wheelchair?” I’m not going to give them a long, graphic response. I’m going to say, “Sometimes I can’t walk very far, and my wheelchair helps me to be able to go the places I can’t walk to. I named it ‘Snooki’.” That’s it. I get to encourage a child’s curiosity, and a child learns that someone who looks different isn’t something to fear. Everyone wins. But . . . when a child says, “What’s wrong with you?” and a parent/ guardian angrily shoos him/her away out of embarrassment, no one wins. You see, I’m left feeling like some sort of animal that the parent was afraid of provoking, and the child has learned that people who look different are something that makes parents uncomfortable- so they become uncomfortable too. Your child is more than welcome to ask nosey questions. If I don’t want to answer or think the answer is too much for them, I’ll ask you for help explaining. But I never, ever want a child to be afraid of me, because I’m different. It’s okay. Please let them be nosey; let them pry. It’s perfectly, perfectly fine.

This brings us to the final and most important point.

Hint #5- Look at the PERSON in the wheelchair- not the wheelchair.

Everyone one of us has something that makes us different. Even when I’m walking, I’m limping and stumbling along with dislocating hips and shifting kneecaps. There is always something that makes me self-conscious, and I think that makes me very, very human. See, that’s the thing. I sometimes feel a little like I’m step behind the rest of the adult world, because I’m using a wheelchair. But, if we could all sit down and talk, we would probably realize that we all have something that makes us feel that way. All I’m asking is to be treated like any other fellow human. When you’re meeting a fellow human in a wheelchair, don’t make assumptions about them. Talk to them just like anyone else, because we are as varied and unique as all the other people you will meet.

Finally, it took me a while to write the post- partially because Joe is researching for a new book about the subjugation of women throughout history, and he kept reading crazy and disturbing things aloud, but also because I was a little afraid. You see, I would rather you fail to follow ANY of my hints than for you to avoid me for fear of offending me. I’m guessing that most of my friends on wheels feel the same way. I’m not easily offended; I’m not even particularly sensitive about the wheelchair. If you say something completely offensive, I’m more likely to ask you to clarify or just to give you the benefit of the doubt than I am to walk away and meltdown. At absolute worst, I might make a joke. Recently, Joe was pushing me in Snooki, and we were attracting a lot of stares. Joe’s response was to yell, “Hodor! Hodor!” as he pushed me. (Game of Thrones fans, you’ll get the reference.) I will never try to make you feel bad or less than anyone else. I promise. All I’m asking is that all of us try to see each other as fellow humans- crazy, chronic illness humans or not.
Peace, love, and health friends.

Long Jump Champ- Able to Jump to the Worst Possible Conclusion in a Single Bound

One evening a few weeks ago I noticed an itchy sensation on my chest. Given that I’m a female, it was far from appropriate to whip my shirt off to investigate, so I ignored the problem until time to change for bed. Upon removing my t-shirt I noticed a red spot with a black “something” in the center. I swiped at the “something” to knock it off, but it appeared to have latched on to me. So . . . I panicked. ‘Oh my goodness! It’s a tick! There’s a tick on me! I have a red circle around the bite. I obviously have Lyme Disesase! Or maybe it’s Rocky Mountain Spotted Fever (or Spotty Mountain Rocket Fever?)? Could it be both? I think I feel achy. Maybe a little feverish?’ During my meltdown I moved a little closer to a mirror to further investigate my newfound parasite. Upon closer inspection, I realized the tick attack was actually nothing more than a wayward watermelon seed that had fallen down my shirt while snacking.

I get it. I’m ridiculous. Normal people don’t automatically assume that a somewhat itchy spot is a tick rather than another clumsy eating venture. Normal people see a spot, investigate the spot, and think, “My, I’m quite the enthusiastic eater of watermelon.” Not me. I envision doctors’ appointments, IV antibiotics, and new symptoms. But at this point, I don’t even apologize for my ridiculousness. “Normal people” expect logical outcomes to things that happen to their bodies. If they get sick, they get better. For those of us living with chronic illness, life isn’t always that simple and predictable. We know that our bodies can and probably will betray us. “Simple” illnesses are never actually very simple.

I haven’t always been a negative person, and in some ways I still don’t feel like I am. I just feel an overwhelming need to be prepared for whatever my body throws at me next. After my body had a few totally unexpected meltdowns, I developed a little bit of anxiety about illness and the possibility for illness. I’ve developed a few methods of coping that keep me from absolutely becoming consumed with fear when something does go wrong. I’ll share them with you in hopes that they help someone else, and I definitely want to know if you have any secrets to handling your own anxieties about illness.

1. Make a plan.
It is within my realm of normal to run a fever. If I’m tired, I’m feverish. If I have a headache, I’m feverish. If anything stresses my body in the least, there’s a good chance I’ll have a low grade fever (and NEED ice cream or grape slushes to cope). However, if the fever lingers for a while I start to worry. I think that maybe I have an infection. Or maybe it’s an autoimmune flare up? Or . . . maybe it’s just one of those weird things that I have to accept that it’s part of my body. To keep myself from going to the doctor every single time I have a fever (which would have been daily for a few years), I set parameters. If my fever goes above a certain number (normally 101), THEN I’ll call my doctor. If it doesn’t, I’ll accept it as part of my normal. If I have a plan in place of what I will do if something out of the ordinary happens, then I am better able to handle the ordinary things that happen sometimes and cause concern.

2. Find a distraction.
Once you have a plan, you’re free to distract yourself from your woes unless your symptoms get out of control. My husband, Joe, is better at this than I am. He’s a pro at finding something to do (a fun night out, a silly movie via Netflix, a late night conversation to scheme and dream about our next vacation) to distract me or at least make difficult times less terrible. It’s okay to NOT think about what is wrong with you for a while. This is difficult, of course, because pain typically demands to be felt, but it is completely acceptable to take a break from worrying and think about something less consuming.

Joe and I are strong believers in the “spoon full of sugar” method to life (Cue Mary Poppins singing . . .). No matter what we are facing, a doctor’s appointment, test results, surgery, or even just a day of feeling rough, we try to soften the blow. If we go out of town for a doctor’s appointment, we try to have a fun night beforehand to enjoy whatever the town has to offer. (Thank goodness most of my doctors are in Nashville, so there’s plenty to do!) Recently on the night before a surgical procedure that I was really nervous about, we took a carriage ride through downtown Nashville and spent the evening listening to one of our favorite bands with a close friend. It’s hard to remember that I’m worried when I’m waving at traffic from a Cinderella worthy carriage on the streets of Music City, USA.

3. Avoid Dr. Google.
If Google charged a co-pay for its medical advice, I would be broke. I am guilty of googling my symptoms, and I know that is an excellent way to make myself overreact. No matter what symptoms you look up, Google will let you know that it’s possibly cancer, or a brain tumor, or maybe Ebola. While the Internet is great for empowering patients, helping them connect and learn more about their illness, and making them an advocate and partner in their own medical care, we also have to realize it also has a lot of worst case scenarios listed. If you’re already concerned about a symptom, bypass Google and call your doctor’s office, nurse’s hotline, or on-call doctor. Google won’t tell you how unlikely it is that you have the worst case scenario illness; it will only tell you that you could have it. That’s an incredibly bad idea if you’re already riddled with anxiety.

Obviously, if I had gone through this list BEFORE I had my watermelon seed/ tick bite situation, I could have saved myself some stress induced tachycardia. I get it. It’s easy to jump to the worst possible conclusion. Heck, some of my best exercise comes from jumping to conclusions (Sorry. Horrible pun.). But . . . let’s try to take a deep breath, develop a plan of action, and distract ourselves with something more fun when possible. May each of you have low stress, worry free days!

Peace, love, and health.