Tag Archives: POTS

Postural Orthostatic Tachycardia Syndrome

Didn’t meet my Disney goals- and that’s okay.

Hey, friends. I’ve missed you all! I’ve been in a season of life that was very focused on becoming a better me- because the best version of myself is who I want creating content for this page. Let me start at the beginning, because I tend to jump to the conclusion and hope everyone can read my mind to fill in blanks.

I’m a bit of a perfectionist. It’s such a part of my personality that at times it can be a deterrent. You see, if I can’t do something perfectly (or my version of perfect which is often skewed from the start), then I would prefer not to do it at all. I fell so deeply into this thought trap that I lost sight of myself for a bit. In my mind, if I couldn’t manage all my symptoms with healthy eating and exercise- why even give it a shot? If my body was disordered at the most basic level (ie. DNA), then how on earth was I supposed to create order? In a time of ugly-ish thinking, all I could think is- “If doing everything right isn’t going to make me my old self, then why bother?” I gained weight. My pain surged to new levels. I was on more medication than ever, and I accepted that as my life.

Fortunately, I don’t stay in these places for long. With the help of my support system, some really fabulous books (ask me for book recommendations- I got you), and a lot of introspection, I realized that regardless of my inabilities, I was able to be better. You see, being better than my current self is always attainable. I don’t mean that I should always feel guilty about where I am currently. Not at all. But, I am always capable of becoming a bit better- maybe physically, but always mentally, emotionally, and spiritually.

When I first started, I had two goals- 1. I wanted to lose 20 pounds before my hysterectomy- which was recommended because of my BRCA2 status. 2. I wanted to be able to walk Disney World- instead of using a scooter. Let me side bar for a minute to explain something. I do not have an ableist mindset. I don’t believe that walking rather than using a wheelchair is “better” or “improvement.” Using the mobility aid that makes the world accessible to you is AWESOME. I have no shame AT ALL about the time I’ve spent using Snookie (the wheelchair) or any other mobility assistance device. However, I experienced Disney World via foot during my honeymoon, and I want to do that again. It’s not an intentional bias against mobility aids, but at the same time, I don’t apologize for wanting to have that same experience now. I want to be able to hold my husband’s hand as we experience the World Showcase at EPCOT. I want to carry my Minnie Mouse backpack ON MY DANG BACK- instead of the basket of a scooter.

So, I did my best. I ate SO healthy. I gave up grains, and refined sugar, and dairy, and soy. Pretty much I gave up all the things that taste delicious- since December 27 (because January 1 seemed like a super cliché day to begin something new). About two weeks into this change, my joint pain lessened enough that I could go to the gym and get some exercise. I began with a recumbent bike, then a treadmill. Now, I wish I could experience the world via elliptical, because that has become my exercise jam (It’s easier on your knees with similar calorie burn- trust me). So, now, it’s late May, and I’m so stinking proud of the strides I’ve made. I’m healthier. My mood is better. I’m probably nicer to my husband and dog. But, you know what? I didn’t meet either goal.

First, my high-risk specialist no longer recommends a hysterectomy. (Mostly because I won’t also have a mastectomy- because that’s freaking terrifying.) Not to mention, I only lost 19.5 pounds. I’m pretty sure that last half pound is hanging on to keep me humble. I will have to wait until I’m actually decomposing to lose that final pound, and I have accepted that as my fate. And, my second goal of walking Disney World? Just not going to happen- at least not this year. I can handle 40 minutes on an elliptical- but that’s only 5,000 steps on a low impact piece of equipment. Joe gets 20,000+ steps in Disney World, and my joints (and POTS inclined heart) just can’t hang with that sort of trek in the Mouse’s magical muggy heat for an entire week.

There was a moment of frustration- heck, there were several moments of pure aggravation- when I realized that I wasn’t going to achieve my goals. But, then, I think about what I gained. I am stronger than I have been in years. My joints are wonky at best- but they’re more stable than they were a year ago. Most importantly, I am growing (not in weight- I’m still working on that half pound that loves me like a fat kid loves cake). I am learning that my best is ever changing and evolving, and it’s a fun experiment to see where I go next. Most importantly, I’m not sitting around hoping things get better. Hope isn’t a legitimate growth strategy. I am doing something to make my quality of life as good as possible. I’ll be honest. I’m pretty happy about that.

So, I didn’t meet my goals. That’s okay. I am going into this Disney Palooza proud of myself. I’m treating myself to some dairy free ice cream, and I’m going to look over all the added refined sugar, because I’m living my best Disney life- which will include some mini corndogs at Casey’s Corner. (Unless it makes me sick- at which point I’ll be having all the vegetables and grilled chicken WDW has to offer.) Also, I may have more than a half pound to get rid of when I get home, because that Mouse likes to encourage treats- and this chick likes to eat them.

Peace, love, and health, friends.

** Don’t forget to follow the @CrazyChronicLife FaceBook page for Disney live videos, pics, and general commentaries from The World.

Advertisements

Fricka Fracka- What the Heck is BRCA?

Hiya! Howdy! Ahoy there, mateys! I’ve missed all of you. I have been so very absent from the blog lately, because I had no idea what the heck to tell any of you. So . . . I’m going to start at the very beginning- because “The Sound of Music” taught me that is a very good place to start. All of this is important, because it leads to a coming announcement for the Crazy, Chronic Life community- but I’m going to save that for a couple days.
If you’ve read our book, you know that medical research is important to me. So much so that I am registered with ResearchMatch.com to participate in medical research studies. Typically, it consists of me filling out questionnaires and submitting them to someone who is compiling data for a study. I received an e-mail asking me to participate in a genetic testing clinical trial at Vanderbilt University. All I had to do was allow the study coordinators to collect a vial of blood- and I got a $40 Amazon card. Character flaw admission- I will do almost anything for an Amazon gift card.
So . . . here’s the thing. If you allow someone to analyze your DNA, you will find out stuff about your DNA that you would prefer not to know. In my case, I got a letter (almost a year after I had given the blood sample) telling me I had a pathogenic mutation on the BRCA2 gene and should see my doctor immediately. Here’s the embarrassing part- I had no stinkin clue what that meant, so I shoved the letter in a drawer. I learned my coping skills from an ostrich apparently.
A month or so later during a check up with my PCP (I had lost 3 pounds since my last check up, so I was feeling rather proud of myself), I asked if he had any idea if a BRCA2 mutation was an issue. I’ll be honest; he did a google search in front of me. Then, he informed me that I had an 87% lifetime risk of having breast cancer. 87%, friends. Y’all, my boobs are trying to kill me, and I didn’t even know. He continued to tell me that the recommendation is to have a hysterectomy and oophorectomy by age 35 and a double mastectomy by 40. What the actual heck?
Now, I’m not the type to completely base my life on a Google search. So, I scheduled an appointment with my gynecologist- but remained relatively calm. I talked to Joe about it, and his initial response (and we’ve come along way since this time) was, “You can’t start cutting stuff of your body because you’re scared you might eventually get cancer.” To be honest, I agreed with his assessment of the situation at that point. Full disclosure: when I got the first problematic mammogram call back, Joe responded by vomiting, crying, and promptly melting down- in a public venue. Y’all, this has been an ORDEAL.
Jump ahead a few months, 2 genetic counseling visits, a high-risk coordinator visit, and a couple breast lump scares that turned out to be nothing, and I’m here. I have an over 80% chance of having breast cancer between the ages of 30 and 50. I have a greater than 50% chance of ovarian cancer- and an elevated pancreatic and melanoma cancer risk. I’m compiling numbers, so you might see higher and lower odds depending where you research. However, the point is, my body is just itching to make a tumor, because it has no idea how to NOT make tumors.
It’s been a scary few months- and the concerns have been so far outside of my normal realm of medical concerns that I haven’t felt equipped to process them. I haven’t told the CCL community, because I didn’t know where to begin. Now, as a new year is approaching, I feel empowered. While I had no idea when I entered this genetic study that I was going to get life changing information, I am grateful, because this information will inform my decisions (and my family’s- which is a whole different and serious blog) as I move forward. More importantly, I know to be vigilant about screenings and self-checks- things I had never considered prior to this information.
Why am I telling you all this? Because, I can’t stand for ‘peace, love, and health’ and keep major health secrets. Additionally, if you have a strong family history of cancer, I want to encourage you to have a genetic cancer panel. (I actually had a second panel completed in case the research study genetic test was flawed.) Waiting for results is torturous. The only thing worse is trying to understand and coordinate a plan once you have results. However, ultimately, knowledge is power.
I asked a patient leader group that I’m in what they do when they get a new diagnosis. I had literally no stinkin clue if I was supposed to be an advocate for EDS, POTS, chronic illness, invisible disabilities, and, oh yeah, BRCA mutations. I still don’t exactly know. However, if my story and my BRCA journey informs or inspires someone else- then I’m all in.

Peace, Love, and Health.

What on earth am I supposed to eat?

Around Christmas last year, I realized a painful truth- I had fallen victim to leggings. How does one become victimized by leggings, you ask? I put on jeans and realized that without the comfortable stretch of elastic, I could no longer get into my normal size. Given that I truly hate shopping for jeans, I decided I would lose weight rather than buy more.
So, I began researching diet plans. I’m sure some of you are thinking, “Why don’t you cut back on junk food and start working out?” Well, it’s a little more difficult. First, my exercise possibilities are seriously limited by joint dislocations. Also, I needed a diet plan that allowed me to eat the sodium I need to maintain a sensible blood pressure. So, after a lot of research (and by research, I mean I consulted Dr. Google- not an actual nutritionist), I decided to try the low carb diet. It was great. I ate eggs and butter and bacon, and I still lost weight! My jeans fit. My husband was thrilled that we were eating meat and eggs for almost every meal. It was a beautiful thing.
Then, at the end of February, I had labs drawn and realized my cholesterol had almost tripled from December until then. After a fairly one-sided discussion with my cardiologist (where he reminded me that EDS and POTS are not exactly compatible with strokes and heart attacks), I started cholesterol medicine and committed to no longer eating meat.
Poor Joe. He went from eating meat at every meal to trying soy hot dogs (which he actually prefers over “real” hot dogs) and lentil shepherd’s pie. One week I was preaching about how our bodies need animal fat- the next week, I was telling him how pigs are slaughtered. This poor man has been the real victim in my dietary indecision.
Here’s what I’ve learned- everyone seems to have strong feelings about how we’re supposed to eat, but I’m not sure anyone actually knows what they’re doing. A few days ago, I posted in an EDS forum asking for advice for recent digestive issues. First, let me say that I was thrilled with the number of responses I received. Everyone was so kind and genuinely trying to be helpful based on their personal experience. However, I couldn’t help but laugh at the range of answers I received. Go vegan. Eat meat. Eat more bananas. OMG, don’t you dare eat bananas. Potatoes are evil. Eat all the potatoes. Eat some yogurt. Dairy will kill you. Eat low carb/ high fat. Eat high carb/ low fat. Then they started using words and non-words like “histamine, alkaline, and FODMAPS.” What in the world? Is everyone as confused as I am?
Remember a few years ago when we were convinced that everyone should be gluten free? I tried that for 5 months with very little success. But, at least that sort of made sense. Now, I’m clueless. Twenty-five years ago, I had to drink milk every day. I think there was some part of Parenting 101 in the 80s that said children had to drink milk or you had failed. Now? Milk is frowned upon. Get your milk from an almond or a coconut, people. But, as with all things nutrition, I can’t actually tell you why you shouldn’t drink milk/ eat dairy. It’s just a thing we’re saying.
I say all this silliness to make this point; no one has all the answers. There are those who will blame your illness, symptoms, mood, or hair color on poor eating choices. But, in fairness, I doubt that any two of those “food blamers” would actually agree about what is/ isn’t healthy. I’m trying to fuel my body the best I can. My jeans currently fit. (Okay, I’ll try them on again at Christmas to check.) I don’t eat meat- even though I just made a pot roast that smells delicious. The only thing that I can eat without getting nauseous right now is a baked potato. I eat too much cheese- even though it makes me feel awful. (But, seriously, y’all- cheese is delicious and worth the sacrifice.) I’m headed into football season, and I know that game day food options for a vegetarian will consist mostly of French fries. We’re doing our best- even when the “best practices” for healthy eating seem to be changing daily.
Peace, love, (organic bananas) and health, friends.

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.

“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.

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

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.