Tag Archives: ehlers danlos syndrome

Overcoming the Fear . . . of New Places

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

Peace, love, and health, friends.

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Being a Sick Perfectionist

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

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

laundry

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

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

Peace, love, and health.

Birthday, Anniversary, and U2- Oh my!

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

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

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

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

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

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

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

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

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

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

Peace, love, and health.

A Message of Hope for World Rare Disease Day 2017

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

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

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

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

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

Peace, love, and health.

Rare Disease in Small Town America

The shower head in mine and Joe’s bathroom won’t stop dripping. It’s incessant “drip, drip, drip” keeps Joe and I awake at night. I catch myself nodding my head in time with the drips. It has essentially become the metronome of our existence at home. We’ve tried everything to fix it. We turn the shower on and back off again. Sometimes that slows the dripping- other times it gets worse instead. We’ve cleaned the shower head and the on/off lever. Sometimes we push really hard on the nozzle in hopes that we’ll make the shower completely stop running water. It doesn’t work. Nothing works.

Now, some of you are saying, “Why don’t you change the shower head?” Well, that’s a fine idea, but it’s not exactly in mine and Joe’s skill set. You see, Joe and I have a variety of gifts and talents- none of which include plumbing. I mean, technically, Joe fixed our sump pump a couple months ago, but he used a couple dumb bells and duct tape to do so. I’m not sure that solitary experience makes him qualified to change out shower fixtures. I once fixed the toilet chain in a college dorm toilet (Seriously, Cumberland College, why was I fixing my own toilet?) with a paper clip, but again, that’s hardly professional experience. It has come to this- we need a real, licensed plumber. That comes with its own set of difficulties. It takes days of sitting around the house before a person actually shows up for non-emergency water problems. “Real, licensed plumbers” are way more expensive than mine and Joe’s pseudo- expertise. At this point, we have just accepted that the shower drips, and that’s a strange quirk of our home.

Why do I think you care about my plumbing woes? Well, I don’t suppose you do. However, the drippy shower has become my constant analogy for living life with a rare disease. My body has several medical “quirks.” The quirks are the background noise for every day. But, at this point, I don’t have the time, energy, or money to address the issues. Much like my dripping shower faucet, my aches and pains have become such a part of my existence that while I’m not happy with the situation, I’ve accepted them as part of life. My pain is not adequately managed, and I don’t always deal with it well.

However, small town medicine is about as effective with managing a rare disease as Joe and I are at handling our plumbing situation. I have great doctors, really. I am sure they are great with managing many common illnesses. I feel like if I were a typical patient and went to any of my medical team with strep throat or high cholesterol or any number of other common problems they could handle it beautifully. Let me be clear- my frustration is not directed toward local practitioners. My frustration lies in the fact that awareness is lacking, physician education is lacking, and I’m the one suffering. Unfortunately, when you’re a “zebra” in the medical community, your problems are anything but common. Even when my complaints are “common” there’s always a rare disease (and its complications) to take into account.

The people that are equipped to help me (you know, the ones who have actually heard of my illness?) are hours away. They’re in clinics with a two year waiting list. But, I’ve never really had a medical issue that I’ve thought, “Wow. This should probably be addressed 24 months from now.” That’s not how illness works either. It’s complicated. It really is. For my friends with complex medical issues, medical care is pretty much a gamble. We are begging to be heard (drip, drip, drip), but we are blending in with the masses.

I get it. I don’t expect that any doctor in small town America is an expert in any rare disease. I’m not blaming doctors for this discrepancy. I’m simply saying this life is difficult. My medical issues aren’t easily addressed, and I am tired of being turned away. My illness is a constant dripping that keeps me up at night- praying that at no point does the drip turn into a gush- and knowing that if it does, I’m poorly equipped to handle the fallout.

Peace, love, and health.

“How are you?” and other tough questions

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

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

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

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

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

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

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

Peace, love, and health, friends.

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

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

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

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

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

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

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

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

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

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

Peace, love, and health, friends.