It arrived in the mail in the middle of the week. The package was pink, the lettering gold. Let’s pause…oh you gotta keep reading this one
How do you tell someone no without seeming rude?
sis, you don’t owe anyone anything. except your mom. call her.keep it going
3 things to master before you start dating
My heart has been shattered almost as many times as my port-o-cath has been accessed. The problem with getting back out there, is well, it requires you to get back out there.Read more sis
As much as I write about (and enjoy) one night stands, if I were to be completely honest with myself- what I really want and hope for one day, is to fall madly in love.
In the far corners of my mind, I think about sitting on a porch and growing old with somebody. My husband will tell me a joke and it probably wont be that funny, but I will laugh for him. With him. And my mind will retreat away from the present and into the past, every heart ache, every IV, every medicine.
Every time I thought I wanted to give up on life and just fade slowly- some spark in my soul has caused me to dismiss that notion and fight. That moment, on that porch, with that man, is the moment that keeps me fighting despite my body wanting to rest forever.
Although I am not able to pin down attributes I want in my Mr. Right, I am able to pin down attributes in myself I need to have before I know I will meet him. One attribute I am consistently working on, is improving my physical fitness. I work out multiple times a week and have competed in several 5ks & 10ks. I’m not where I want to be physically but I am getting very close.
Imagine my delight when I met Mr. Tough Mudder, a very sexy yet calm man in his early 50’s who spent his career in the mortgage/loan business. Recently laid off, he was focusing on opening several CrossFit Gyms & just competed in a Tough Mudder Competition. He hiked in his spare time up several mountainsides, ran 15 miles a day, and judging from his biceps- was no stranger to push ups.
I met Mr. Tough Guy for margaritas in a classy Spanish restaurant. He admired my ambition and we connected instantly over our love for eating the right foods and working out regularly. I just failed to share that I had CF and that my workouts wouldn’t quite be in line with running up the mountains.
After a drink, he asked permission to invite his friends out as well. They were in town for a charity event and the words “charity event” had me completely sold. Mr. Tough Guy actively volunteers in the community and I could see myself volunteering with him for our next date.
His friends were just as polite and we all shared some tortilla chips and another round. Wonderful laughs and all in all, a great first date. The friends left and he asked permission to walk me to my car.
As we approached, he leaned in to kiss me. His hand stayed in the appropriate place as his lips gently caressed mine. Soft and sensual. Just a moment in time without any preconceived notions about going back to his place or taking it any further than a lingering kiss.
Second date, he picked me up and took me to a very high end restaurant in the suburbs. We shared a bottle of vintage Roth. Great conversation and we found out that we had very similar childhoods despite our massive age difference. I don’t like to jump to conclusions, but I was already planning our 3rd date…
However, during the time it was taking for this to cultivate, I noticed my weight started to plunge. I lost about 9 lbs in 2 weeks and although I felt fine, I started waking up in the middle of the night coughing. I would sleep in later and needed a power nap in the afternoon. General fatigue? Something more? I scheduled a doctor appointment to find out.
Psuedomonous aeruginosa is a particular type of lung infection that I cultivate. It was back. Time to be admitted into the hospital for what we don the “tune up”. It’s a lot like getting your car serviced, regular intervals of servicing keep it going long -term, but the vehicle can’t be driven. Just as I am coordinating when to check in to the hospital, Mr. Tough Guy calls.
I come clean and tell him about CF and that I am going to be admitted to the hospital when the unthinkable happens.
Ready to read round 2?
I sit there in the waiting room, looking down quietly at my phone as I read the text.
It has only been 2 months since my last hospitalization, a sure sign that Cystic Fibrosis is progressing. My lungs simply…are losing their stability. One chronic infection after another and I am starting to build up resistance to the only medication that exists to save me.
“Can I come up there right now to be with you?” Sure, I’ve had boyfriends feel it was their obligation to visit when I am hospitalized, but to sit with me in the waiting room as I find out what day I will be admitted, as I hack up mucous into sputum cups to send to the lab, as a 3/4 inch needle is attached to my chest…this is new.
I reply that his gesture is entirely unnecessary and I have checked myself into a hospital before, so no need for him to drive 20 minutes to sit with me for the next 30.
The problem is, he’s adamant. He wants to be there. I quit replying to his messages. This is MY life, MY failing health, MY struggle. I’m not ready to share it with a man I just met. Two days later, I’m hooked up to my IV machine and going through chest physiotherapy.
“Can I visit? Can I bring you anything?” He texts. I thought I was ready for love.
As Carrie Bradshaw once said, “I’m looking for love, real love. Ridiculous. Inconvenient. Consuming. Can’t-Live-Without-Each-Other-Love. ” And here, I am, completely vulnerable, with a man who wants to bring me dinner and sit with me in the hospital. Yet…I can’t bring myself to reply.
He never did anything wrong, he never said the wrong thing. He was polite and genuinely cared to be there for me, despite only being on a few dates. So why couldn’t I let him?
I delete the message. And the next.
-I never reply to The Senior Loan Officer again-
I can have a conversation with you about your stressful day while infusing antibiotics straight into my heart through a port-o-cath. I pay attention to your every word when nausea kicks in, asking intelligent follow-up questions, and when you’re relaxed after your stressful day, just ask that you hold my hand. Bonus points if you can bring me a Starbucks en route to the hospital.
I am 32 years old and have been hospitalized 67 times, ranging in length from one day to six months. The diagnosis is cystic fibrosis and diabetes. The prognosis? Nobody really knows.
I am happily engaged to a healthy man. In fact, he’s so healthy I don’t know if in 5 years I’ve seen him eat a vegetable that I didn’t force him into.
And yet, dating was extremely difficult for me as I grappled with questions on when to tell him about my condition, navigating extended hospitalizations, and yes, even losing my bowels without warning one night.
It’s not uncommon for those with chronic illnesses to be shunned from the dating community. Many have given up entirely and left to feel like ‘used goods’.
Even as I researched the article, polling my friends with chronic illnesses, many were reluctant to share their names because if a guy on an app googled them, they would face rejection before they felt it was time to disclose.
And I couldn’t help but remember what it was like for me the moment the hot guy I was getting to know, decided to type my name into Google, and decide if he was up for the adventure.
Our love story lasts and here are 5 other reasons that if you’ve been given the news or been contemplating taking the next step with someone with a chronic condition, to give it a go!
1. She Embraces Change
Every symptom we have we are fully prepared to pack our overnight bag and head to the emergency room. Delicately we balance a full life on the outside, with a meaningful life on the inside of the hospital wards.
I’ve always prided myself on dating men who are spontaneous. There’s nothing like leaving on a trip at the spur of a moment on a Friday afternoon.
Sometimes, that trip is to the hospital.
Many times, that trip is to a place we’ve been talking about visiting.
Don’t get trapped dating a woman who you have to convince to live a little. We’re prepared to change our plans on a dime and have a good time, regardless of where we end up.
2. She’ll enhance your life.
There’s a high probability we won’t want small talk about how the Vikings keep losing. And yet, when you explain the plays to us, we will cheer louder than the die-hard fans because we know what it’s like to root for something as part of a larger piece of life.
“Babe, you don’t even like sports,” I can hear my fiance comment.
“I like winning though,” I retort back.
He teaches me about quarterbacks, I teach him about infusing an IV drip. It’s called teamwork, and it’s the fabric of what has built our relationship during the best of times and the worst of times.
When the wedding day comes, we will know what it means to say “I do” when the pastor asks about sickness and health. We can get through it all, because we have.
3. She Doesn’t Care About The Trivial Things
I will be the first to admit that I have my hairstylist on speed dial. She knows that when I call, she needs to get me in for my extensions because I’m about to travel or I’m getting back from an extended hospital stay.
And yet, I’m not going to talk to my fiance about my hair at length. Or my makeup. Or my patent leather shoes. Or my nails because the polish actually causes the machines to malfunction when reading our oxygenation levels. There is nothing trivial that can detract us from spending intimate moments together, experiencing the journey of life, and having deep conversations about it.
4. She’s Low Maintenance
Chronic illness has forced us to grow up enduring a lot of trauma. We’ve seen our friends buried before us from the same conditions we battle, we have spoken at funerals, and held the hands of the parents as they say “goodbye.”
Nothing rattles us. We don’t care if our hair is perfect or if you’re a few minutes late. We’re strong when times are rough and able to hold your hand too when things get hard. We’ve been through moments in the hospital you can’t even imagine and are fully prepared to be strong for those we love when the time comes.
5. She’ll break you out of your comfort zone.
In the hospital, we are woken up at 5 am for blood draws and encounter dozens of personalities every single day as people arrive with needles, vials, tests, and treatments.
During one type of treatment, a respiratory therapist beats our lungs with a machine and forces us to cough while we simultaneously inhale medicine to keep our airways open.
And we sit there, smiling and having small talk.
We are extroverted AF and know how to turn on the charm at any given moment. We will push you to see a world beyond what you’ve already experienced, teaching you tricks of extroversion to match your introversion. And if you’re extroverted? All of that pent up energy inside of hospitals for months out of every year means we are ready for adventure when we get out, matching your style easily and effortlessly.
Gentlemen, dating chronically ill women is not as scary as you may think. We bring the best out of you and force you to come to terms with how all of our lives are ending. In fact, that realization means you will have the best relationship you ever had. You will learn to love differently, appreciating the small joys as well as cheering on (loudly) the big wins. Try it.