Category Archives: Ehler Danlos Syndrome

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.

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. 

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!

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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Chronic Christmas Craziness and Other Communicable Diseases

Confession time, friends. Yesterday, I had a full Clark Griswald-esque Christmas meltdown. You know that scene from the movie when he finds out his long awaited Christmas bonus is nothing more than a membership to a jam of the month club? (Which is a pretty dang cool gift, if you ask me.) He proceeds to totally have a total freak out of epic proportions . . . yeah, that was me. Now, before you label me a Scrooge and believe that I need to be visited by some of Charles Dickens’ ghosts, let me explain.

Holidays are tough for the chronically ill- really tough. For me, I feel like holiday time exposes all my flaws. The rest of the year I can hide that my house isn’t always neat and organized. I can keep you from noticing that I don’t have the energy to wash my hair (or even shower sometimes) more than every other day. My cooking short cuts (I’ve got to make a blog about that soon!) can fly under the radar. But at Christmastime, you’re going to see these things. When I sit around with family members chatting about the past year, you’re going to notice that I start lying down or leaning over- because for some reason I can’t sit up for long without my ribs moving out of place. You’re going to see that my Christmas cooking came from Kroger (grocery store, non-US, friends!). And, if you look closely, you might even notice that Joe has to open bottles and cans for me, because my hands won’t cooperate lately.

Although these are all parts of my daily reality, Christmas makes me feel much more exposed. Don’t get me wrong- my family is fantastic. I can’t think of a single member that would tease me (well, they might good-naturedly tease me- but NEVER hurtfully) for the things I cannot do. I’m very blessed to have a group of people who love me and do not think less of me when I just CAN’T do something. The problem lies in that I hate looking pathetic. I hate looking like that hot mess that just can’t get it together. There’s nothing more dehumanizing than being pitied.

So, anyway, back to last night’s meltdown- here’s how it went down. I was trying to cook real food- things that didn’t come pre-made from Kroger. In the process, I cut my finger, dislocated my shoulder and a finger, dropped essentially everything I touched, and somehow my blender full of boiling strawberry puree exploded. (FYI- If you’re covered in boiling hot strawberry puree and you yell for your spouse to come help you, FIRST explain to him that the red super-mess is NOT blood. The poor guy was preparing to apply pressure!) Somewhere during all of this, in a moment of panic (and chest pain that’s been haunting me for a couple days) I sat down on the kitchen floor and wailed, “I think I need to CRYYYYYY!!”

Poor Joe. He’s been through these meltdowns enough to know the protocol. He brought me a chair and a Cranberry Sprite Zero (yum!). He reminded me that everything that we were preparing for was fun- not something to freak out over. He even reminded me that we are celebrating with people that we love (and even like) who accept us exactly the way we are. He’s right. I just got caught up in the craziness of wanting everything to be perfect.

Here’s the truth. I will never have a Pinterest-perfect Christmas. My Christmas cards will be store bought, and my handwriting will probably be illegible after the first few. My gifts will always come from whichever store looks the least crowded- or better yet, Amazon. I can’t remember to buy things like bows for gift boxes or name tags. Joe did the wrapping- it’s not exactly his greatest gift in life. The gifts we bring are lumpy; the paper is ripped and patched, and the recipients’ names are written on the side with Sharpie. To be honest, Im not even sure if I put the correct name on gifts. So it’s possible there will be a gift shuffle at the end because I have given my brother the Princess castle intended for my 2 year old niece.

But . . . post-Griswald-esque meltdown, I’ve decided I’m okay with the imperfections. I may not feel fantastic sometimes; I’ll excuse myself and rest. I may not be able to get food on the table on time (you know, that food I just have to re-heat because I ordered it from Kroger), but we can just eat later. I might lie down while I visit with my family; I’m sure they’ve seen me do stranger things. I’m going to relax as best I can and enjoy this crazy, chronic Christmas.

So, um, could all of you remind me of this over the next few days?

Merry Christmas, chronic illness family. May your heart be filled with the hope and joy of this very special (and sometimes crazy) season.

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.

Trading Places . . . not nearly as cool as the movie.

In life, there are good days and bad days. There are even streaks of exceptionally good and exceptionally bad luck. And then, there are those times when you start to feel a bit victimized by life. That’s basically the story of the last few weeks at my house. I’ve reached a point of calm after the storm, and I’m finally able to look back at all that’s happened and laugh. But . . . yeah, at the time, I was definitely NOT laughing.

All summer long I have known I would be having a permanent bladder pacemaker placed in my lower back in August. We vacationed in May, went to weddings in June, and prepared for Joe’s coming semester in July- all so we were prepared for August to be my great month of convalescence.

The procedure required 2 surgeries. The first surgery placed a wire near my sacral nerve (at the base of my spine) and all the other wires were left on the outside- taped to my body. It was a long, disgusting, painful week of not being allowed to shower and trying to keep from accidentally ripping wires out of my body. (Lovely, right?) The second phase was 7 days later and placed all the wires on the inside (and made showering possible again!). It was a LOT on a body that isn’t exactly high functioning to begin with. Even though I had spent the summer preparing to be out of commission during August, I was still a little shocked at how hard it all was. The first surgery I was completely sedated, so I had the accompanying chest pain/ sore throat from being intubated. The second surgery was simpler- just twilight sedation. During the second surgery I kept thinking I was climbing beautiful purple mountains with a pink glittery snow falling . . . Every time I would try to catch a snow flake my anesthesiologist thought I was in pain and would hold my hand and pet my head. She was seriously messing up my snow/glitter catching game!

It was a lot. One of my shoulders dislocated during the prep for the first surgery. (Doctors aren’t used to patients that come unglued just from scooting from one bed to the other.) There was a small allergic reaction to the IV antibiotics. There was the whole frustration of not being able to shower. Blech. Just blech.

And then . . . it all ended except for the healing process. For six weeks following the second surgery, I am not supposed to lift more than 5 pounds (My dog weighs 10!); I am not supposed to stretch or bend at the waist. I can’t exercise or be in any type of standing water (ie. bath tub, pool). I’m still a bit restricted. Then I developed a fever. Not just my normal “I’m a little tired today, so my body is going to overheat a bit” but a true 101+ degree temperature complete with a lovely rash. I called my doctor, started antibiotics, and stayed in bed even more than I already was.

During all this Joe was doing his best to take care of me. My mom cooked and brought food from 2 hours away so we wouldn’t starve. (Joe tries to cook, but his specialties are limited to break and bake cookies and Hot Pockets.) Joe did laundry, heated up leftovers, shopped for groceries, and bought a lot of grape slushes from Sonic.

Then one night during the first week of healing after my second surgery Joe wakes up and says, “My stomach feels weird. I’m going to sit in the living room a little while.” He gets out of bed and starts heading that direction, and then I heard a huge crash- a train load of elephants type crash. It was nighttime; the house was dark. I just assumed he had knocked down the full length mirror or hit the towel rack. I chuckled until I realized the house was eerily quiet. So I yell out a half-hearted, “Are you okay?” I really assumed he had bumped into something. It didn’t occur to me that anything could be wrong until he didn’t answer. I flipped on the lamp and saw that Joe was sprawled across the floor- clearly unconscious. I jumped up and ran to him. Joe came back into consciousness with an earth shattering sneeze (weirdest sound I’ve heard in my life) and tried to stand up. Before I could get to him, he passed out again- banging his head on a door frame in the process.

In a scene that would be totally fitting for a sitcom, Joe came to with another crazy sneeze (What’s with the sneezing anyway?) and sat up as I was trying to get to him. Remember that I’ve just had surgery; even at top speed, I moved slowly. Joe sat up just as I got to him and then fainted again. This time I was close enough to catch him and lower his head to the floor. At some point during all this, I realized I was in WAY over my head. I felt for a pulse, and I couldn’t even tell if his heart was still beating. I couldn’t lift Joe; I couldn’t even hold up his upper body to keep him from falling over. I had to have help. I called 911. You don’t realize how terrified you are until you reflect back on your emergency calls. I was saying pathetic things like, “Please hurry. Tell them to come quickly. I’m scaaaarrrrrreeeedddd!” Now, in my rational mind, I know that the dispatcher was not going to tell the ambulance driver, “Drive faster. This sick person has a scared wife.” But, when you’re scared and desperate, you just want to do all you can to try to get help.

The paramedics showed up in under 15 minutes, and they loaded up Joe. During this time he started vomiting. Given that he couldn’t move without fainting, that meant there was a huge mess but it was hardly the time to worry about that. I had to follow the ambulance to the ER which was a little terrifying because I was battling my own need to faint. We arrived at the ER; Joe was taken back for a head CT because he had bumped his head. It was all absolutely terrifying.

Here’s the thing. I’ve been in Joe’s place. I’ve been the one that is sick and hurting. I’ve been the person waiting to hear results from scary tests, but I’ve never been the spouse of that person. It’s HORRIBLE. I would have selfishly traded places at any point. When you’re sick, all you have to do is be sick. You’re in survival mode. You just keep breathing and hoping the pain goes away soon. When you’re the spouse, the weight of the world is on your shoulders. In my case, the weight of the world was on my broken down, faint, and nauseous body. I had to be Joe’s advocate. I had to make sure he was getting the best care possible. I was in charge of telling the nurses when he needed more nausea meds or needed another blanket. I had to ask for help getting him in and out of bed if he went to the restroom. I had to contact family members and update them on Joe’s condition. I had to remember to ask someone to take care of our dog. Those were my jobs.

Ultimately, Joe was fine(ish). He had a terrible stomach virus. We knew he had been exposed to a virus, but we didn’t expect it to present so dramatically if he caught it. He was released after a very long and frightening night in the ER. He came home, and I had to be in charge. I had 2 surgeries within 7 days, and I was still the healthiest person in the house. I had to be the one to clean the massive mess from Joe’s middle of the night sickness. I had to set alarms and take Joe medicine. I had to ignore any issues I had going on for a few days to deal with the more pressing issue at hand.

Joe was so terribly and frighteningly sick. I would never wish the terror of checking for your spouse’s pulse on anyone. It was awful. I’m nauseous just thinking about it. But in the most terrible times of life, there are moments of clarity. Joe is my husband. I made a vow to him and to God that I would always do whatever I could to love him completely. In that one horrible night (and a few days that followed), I was Joe’s lifeline. I had to put my own “woe is me” health concerns on the back burner, because it was most important that I care for him. I also realized that Joe is required to drop all his concerns to care for me pretty often. I didn’t realize how that feels. I didn’t know the stress of having to be an advocate, and a caregiver, and communicator for someone who is too ill to do those things for himself.

Coming out of this experience, I have a new respect for what my husband and family have had to do for me many times. Caregivers have a tough and unenviable job. I also have a new respect for what my body can do. I often feel like I’m not very useful to anyone. Even though it was a terrible way to have to prove this to myself, I was so very glad that when Joe needed me I was able to step up to the plate. The last few days I keep saying that I don’t understand WHY I am so exhausted, but as I write this I realize I probably have plenty of reason to feel extra tired.

Yes, I get it. This isn’t as light hearted as most of my posts, but it’s been such a huge part of my life lately that I wanted to share it with you. I promise, we’ll get back to making fun of all things sick-ish soon.

Peace, love, and health, friends.