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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

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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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Back off, Bullies.

There was a girl in junior high who knew every other student’s weakness. She knew which kid would be hurt by being called fat or ugly or dirty or (in my case) “frog eyes.” (It’s true. I have huge eyes. I’m over it now. Besides, I like to think they give me an Amanda Seyfried vibe . . . Yeah, okay- maybe not.) She would use this mental list of everyone’s weaknesses as ammunition to wound most effectively. While I commend her excellent memorization skills, I realize now this girl was just a bully. At the time, I thought she just happened to speak the truth that was the most painful, but I realize now that she was intentionally taking aim with the most painful arrows- because that’s what bullies do.

Now, I’ll give this girl a break, because she may have grown up to be a perfectly lovely individual. I don’t really know. I only know that I would never want to be judged based on my 13 year old actions. What I learned from her, though, is that there are people that will wound without any regard for you. Even in the non- junior high world, bullies exist.

The real question is why I’m choosing to write about them now. I’m 31 years old; I should be over crying in the girls’ bathroom about being called “Froggy.” In many ways, I am over it. However, the more time I spend trying to support and advocate for the chronic illness community, the more I realize that we are easy targets for bullies. I keep seeing my friends- my chronic illness family- used and abused, and it makes me angry. So, I’m speaking up- for all of us. Back off, bullies. We’re sick, but we’re not victims. Every type of bullying I mention isn’t necessarily a type I have personally experienced. It is, however, a growing trend I see among my chronic illness friends, and today, I’m asking that you lower your metaphorical weapons.

Adult bullies aren’t as easy to understand and categorize as the thirteen year old “mean girls.” Some grown up bullies think they’re helping or just showing “tough love.” I get that. I’m sure there are times that I have had the best of intentions and just gotten everything very wrong. That’s why today, I’m calling out the grown up “mean girls (and their gender/ age equivalent)” that may have no clue what they’re really doing.

The social media merchant. There are so many online businesses right now, and I applaud anyone who is making money by selling a product they love. That’s awesome. Seriously, you rock, and I admire your effort. Having said that . . . stop exploiting my chronic illness. Do not tell me that your product will cure my genetic illness (that causes my very DNA to be flawed) just because it cleared up cousin Suzie’s eczema. All the InstaGram before and after pictures in the world do nothing for my community. Let me be clear- if you tell me about a great product that you sell, I am capable of understanding that it’s a business. I’ll listen to your sales pitch and thank you for sharing. However, if you are a perfect stranger and approach me just because you heard that I am chronically ill (and this happens way too much) to tell me that if I wanted to feel better I should try your product . . . then NO!

How is that bullying? Let’s think about the situation. A person who is peddling whichever “snake oil” happens to be popular is telling me that I am choosing my illness because I won’t buy their product. You are telling me that buying your product is “an investment in health,” but you fail to see that I spend every day investing every ounce of my mental, physical, and fiscal resources in my health. I’ve seen kind and well-meaning people post on social media that “ . . . if you’re tired of spending money on doctors, make an investment in [such and such product].” Really?!? Your shake, pill, or oil is going to stop my need to see a qualified medical professional? No, it’s not. Think about what you’re saying. I have my doubts that any magic concoction is going to trump the doctors and scholars at Vanderbilt University or Cleveland Clinic. Are you truly trying to tell me that I have wasted my money and time going to these places rather than using your social media cure?

The Pharisee. Let’s be clear; I am a person of faith. I was raised in church, and I am truly grateful for the values of love and kindness I was taught there. I am not calling out those with religious convictions. I have been so blessed with thoughtful people who have prayed for me when my health was in a difficult place. But then, there are the Pharisees. The Pharisees throughout Christian scripture were people who chose to focus on laws- rules of right and wrong- rather than the values of love and kindness Christ came to teach. They were far more concerned with the letter of the law rather than the spirit behind the law. The Pharisees saw every affliction as repayment for wrongdoing- rather than just an unfortunate situation. Sadly, these people still exist today. I recently read a post from a fellow sufferer of chronic illness where she was told that she simply chooses to be ill. A minister told this poor soul that if she had enough faith, if she prayed enough, if she followed Scripture closely enough and did enough good, she would have already been healed.

Yeah, sorry, Mr. (or Mrs.) 21st century Pharisee, but that’s not how life works. My body is human, and it is afflicted with some very un- heavenly illnesses. I refuse to believe that I caused this or that following your list of rules would cure me. I refuse to believe that I was pre-destined to this suffering. So, if you’re telling me that I made this happen- you’re being a spiritual bully. I did not choose to have flawed DNA. I do, however, choose to live every day loving others and being kind. And, if you are walking around telling others that they chose their illness, their own personal, physical hell, you haven’t made that same decision. You’re being a spiritual bully.

My husband (and I only share this because he has given me permission to – and insisted that I- do so) suffers from depression and is under medical treatment- which has been wonderfully successful to this point. In the wake of Robin Williams’ death, he was met with his own personal host of Pharisees. Pastors and other people of conviction took to their pulpits and social media to blame Robin Williams’ death on his lack of faith. I’m not sure that these speakers understood how much their words were undermining the efforts of the medical professionals who were treating some in their congregation for similar illnesses. The truth, however, is that Mr. Williams was ill. He struggled with depression and mental illness. I don’t know Robin Williams’ personal beliefs- they’re his and not my place to pry. I do know, however, that he was sad and ill. I know that others with mental illness need to hear kindness and compassion for his situation- not blaming and hatefulness. My heart broke as post after post and uninformed sermon after sermon we were forced to hear mental illness blamed on weakness, lack of faith, and a poor relationship with our Creator. In fact, the bullies were waxing eloquently on a situation they didn’t understand. Bullies do that. Pharisees do that. Sorry, Pharisees, but I would very much like it if you would leave me and my husband (and the lepers) alone.

The consort. Let’s talk relationships. My husband is wonderful; he really is. However, what I keep seeing repeatedly among my chronic illness friends is that relationships are especially difficult in the chronic illness world. Night after night I message with friends who are facing verbal (and sometimes physical) abuse, because their illness is making them not meet the aggrandized standards of their significant other. I know that guilt. There was a time that I truly prayed that my husband would leave me, because I knew he deserved better than this sick, shell of a wife. My remorse for the person I was becoming was all-consuming at times.

Having said all that, not once in all this grief have I deserved abuse. Trust me- I was abusing myself plenty; I certainly didn’t need more guilt. My husband was fantastic. He knows I’m a hot or that sometimes I go a couple days without washing my hair (much like the college students he teaches), but he has never once made me feel like less of a person. I have other friends who have not had that luxury. Please, spouses, partners, and significant others, listen to me when I say- back off! If your significant other is ill (mentally or physically), love them for who they are- every flawed inch of them. Due to their roles as a disabled/ chronically ill adult, if the house isn’t clean; heck, if the spouse isn’t clean, give him/her a break. They’re doing their best. If you look at the person you profess to love and see them as less of a person because of their illness, you’re bullying them. If you refuse to believe their illness is real- you’re a bully. You have chosen to face life with this person. There is a part of them you chose to love completely. You are supposed to be their cheerleader. You are supposed to be their advocate. If you are anything less, you are being a bully.

For those of you who are in such a relationship, I am sorry. I am truly sorry, and I sincerely hope and pray you eventually receive the understanding and deliverance you deserve. This treatment is toxic to your illness.

I fear in writing all this that you think I’m a jerk. The last thing I want is for you to think that I sit around waiting to call others bullies. (I’m fairly confident that would actually make me a bully, and that’s certainly not my intention- and that would defeat my entire purpose.) I simply want to make everyone think. I want to make others realize that it is not okay to blame someone’s illness or circumstance on that person. Even if you can’t see something, that doesn’t make it a figment of someone’s imagination. Believe me. Believe that I didn’t choose this life. Believe that I wanted more than this for my life, but I understand that this is the genetic hand I’ve been dealt. No one gets to bully me for something that I couldn’t escape.

You, my sweet sufferer of chronic illness, no one gets to victimize you either. We’re here. We’ve got each others’ backs, and, today, we’re asking that the bullies lay aside their weapons. So, bullies, back off. We mean it. We aren’t your victims, and we will retaliate- in our own crazy, chronic way. And, seriously, who even knows what that means?

Peace, love, and health, friends.

 

 

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.

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.

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.

Wedded Bliss Can Be Hit or Miss

There was a moment in the first months after Joe and I married that I realized that the whole marriage process had left me completely unprepared for marriage. I was cleaning the bathroom floor in our teeny apartment (Seriously, do males think the toilet is merely a suggestion for their urinary pursuits?), and the absurdity of the whole dating/ engagement/ wedding process hit me. Joe and I had a great time dating. We went to sporting events, festivals, historical landmarks, . . . truly anything and everything we wanted to experience together we did. Then there was the engagement/ wedding time. It was filled with teas and brunches, hair appointments and fake nails, vows and ceremonies. And, essentially, none of those things occur in real life. Real life (at its rawest and most real anyway) is filled with laundry, mystery stains on the bathroom floor, and the never-ending need to prepare another meal.

Don’t get me wrong. Marriage has enough redeeming qualities to make up for the gag-worthy moments. It’s a great feeling to know that your best friend will be beside you as you fall asleep at night or that the person who always makes you laugh will be joining you for dinner forever. I wouldn’t trade all that marriage is in order to get rid of the responsibilities that come along with it. I just realize there is very little leading up to marriage that has anything to do with the actual act of being married.

Before I got married there was a bridal brunch- now there is coffee and Facebook.

Yep. There was a legit bridal brunch in my honor before my wedding. There was a yummy coffee flavored punch out of a beautiful crystal bowl. I wore heels and pearls and wiped my mouth on dainty embroidered napkins. I was fairly confident I had reached the pinnacle of being a lady. Now, I stumble out of bed at the last possible minute I possibly can and still make it to wherever I have to go. I wear an odd assortment of Joe’s clothes (because boy sweatpants and t-shirts are the most comfortable articles of clothing ever). I drink coffee (or I make coffee and leave it setting next to me because I’m too tired to remember to drink it) and peruse Facebook statuses in silence. I don’t talk, and if Joe speaks (or God forbid, sings) I grunt in response.

I was given a beautiful collection of silver, china, and crystal. We use paper towels as much as possible.

When you get married you get a lot of gifts that you will probably never find a reason to use. I remember receiving beautiful crystal pitchers and china pieces and imagining the elaborate dinner parties I was going to have. Yeah, um no. I’m not a huge fan of plastic/ styrofoam plates since they’re far from environmentally friendly, so we rely on a lot of paper towels . . . or anything dishwasher safe.

That beautiful bridal wardrobe is irrelevant in real life.

I have an awesome collection of dresses that I bought during the time leading up to my wedding. I recently loaned all those dresses out for a couple months, and I can honestly say I didn’t miss them once. All those beautiful pastel dresses are just not necessary for my life now. I haven’t had on high heels in years, and it would probably take me the better part of a day to remember where I put my pearls. During my engagement I bought those dresses because that is how I imagined a “real grown up” would dress. Yeah, I’m living real grown up life now, and it’s all about what is clean and what is comfortable.

There were solemn vows and a reverent, “I do.”

Again, don’t misunderstand. I meant every word of the vow I made to my husband. I have every intention of holding up my end of “for richer or poorer, in sickness and in health . . .,” but I had no idea what any of those things meant. I thought sickness was a temporary thing that happened then got better- or that it didn’t happen for a really long time. I thought that people were either rich or poor or somewhere in the middle- not that life went in cycles of relative comfort and then just way too many bills.

In truth, I thought life would keep running along just as it had been during dating and engagement. I knew there would be laundry and meals to cook, but I didn’t realize I would be trying to do those things (with my husband’s help- I’m not insinuating that I’m on my own in all things domestic) with absolutely no energy. I didn’t know that in order to keep up with the speed of our dating lives I would be expending every ounce of vitality and enthusiasm I possess. Life is manageable, but it’s just so very different from what I imagined.
A wedding is a bizarre way to start a marriage. It would probably be more appropriate if the soon-to-be- wed couple spent a week on the clean-up crew of a high school football camp. I mean, at least there would be a little more on the job training for the messiness of life than what a wedding offers. However, because we are all a bit unprepared when we get married . . . that means it’s not just me. I’m not the only one that jumped into the deep end and can barely tread water!

You see, when I became sick after I got married, I was so ashamed. I felt like I had tricked Joe, because I changed so much after he married me. It seemed only fair that I should remain the same person I had been throughout our dating life, but illness took that from me. There were so many times that I have wished I could go back before the wedding and tell Joe all that I know that- at least then he could make an informed decision.

It has occurred to me recently, however, that none of us really know what we are doing when we get married. We all enter marriage with the absolute best intentions. We plan to love our spouse the best way we know how, and we try and fail and try again and succeed a million times on our way to that goal. I’m not saying I will never feel guilty again that I stuck Joe with a chronically ill wife. There will be those days from time to time. I am saying that I have forgiven myself for getting sick and all the ways it has affected those around me. Yes, I surprised Joe by becoming sick (and staying sick) in the first couple weeks of our marriage. But, then again, I probably surprised him a million other ways too.

So, yeah, there have been a lot of surprises after Joe and I have gotten married. I wake up super grumpy. Animated movies make me cry. I get up multiple times during the night to brush my teeth. I only own about three pairs of socks. Joe forgets to close drawers after he opens them. He refuses to sleep under a sheet (but will sleep under a blanket?). He puts ketchup on green beans and doesn’t like dessert (more for me!). Obviously, some surprises are more fun than others, but I’m enjoying our life together- so I’ll deal with the surprises as they come.

Peace, love, and health.

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