I got married on the 21st of September 2019. I had just recently been diagnosed with Ehler’s Danlos Syndrome (two months prior) and had spent the rest of the year trying to figure out and acclimate to the sudden onset of POTS (postural orthostatic tachycardia syndrome) and IST (inappropriate sinus tachycardia) and the worsening of existing gastrointestinal issues.
The 20 months of our engagement were medically and financially tumultuous.
When we got engaged in December of 2017 I was on crutches after my left knee had suddenly decided to crap out on me in my sleep. I had undergone three prior knee surgeries, two on the left and one on the right. After my first two knee surgeries I had been issue free until I got cocky and decided to be a ballroom dance instructor and proceeded to blow out my medial patellofemoral ligament (MPFL), which required an allograft (donor) replacement surgery in May of 2016.
I had to wait until I had been employed for a full year to be eligible for FMLA, and my employer had a salary matching Short Term Disability policy that I wanted to take advantage of, so although my knee reinjured in November 2017, we had to wait until March 2018 for the surgery.
We were set on the 21st of September for our wedding (yes, it’s because of Earth, Wind, and Fire), and decided it would be better to do the wedding in 2019 instead of 2018, so I would have time to heal from my knee surgery and hopefully be able to dance at the wedding as much as I wanted to.
March rolls around and the surgery goes well. We had been worried that I had snapped the allograft, but it was just stretched out, so my surgeon tightened it and cleared out a bunch of scar tissue. It was the third operation on my left knee though, so recovery was excruciatingly slow. We had a lot of setbacks and difficulties with coverage through workers compensation (it was originally a workplace injury at the dance studio). I still, in fact, am not fully recovered from that surgery nearly two years later, and at this point this is as good as it’s going to get for that knee, which is not ideal, since I can’t ascend or descend stairs with it or stand on unstable surfaces (like the bus), and it buckles and gives out randomly, in addition to the constant pain
In August of 2018 I changed jobs. The job wasn’t a good fit for me and my employer was unable to reasonably accommodate my autistic needs on top of my physical needs. I started working at a preschool and I LOVED IT.
But shortly after I started that new job we were hit with some bad wildfires and the school didn’t have air conditioning. My childhood asthma came back, and shortly after that I started getting sick. A lot. Over the next few months I got bronchitis that turned into pneumonia, followed by my first ever sinus and ear infection that ALSO turned into pneumonia. The first round of antibiotics didn’t help the second bout of pneumonia, so they had to try a more aggressive antibiotic, which my body reacted to with widespread tendonitis.
In December, while in Australia to visit my now in-laws for Christmas, I developed chronic fits of a spasmodic cough. I would start coughing suddenly and couldn’t stop for several minutes.
Then, just after my 27th birthday in January 2019, I experienced my first severe episode of tachycardia. I ended up in the emergency room four times over three months, not to mention all the appointments with my PCP and specialists, before we managed to rule out anything immediately life-threatening. I was getting chest pain, shortness of breath, palpitations, severe dizziness. I was ending up in near-syncope, but thankfully not fully losing consciousness.
After missing about a month and a half of work over the 5 months I had worked at the preschool I had to drop down to part-time work. We kept modifying my hours to try to accommodate my ability to actually make it in until my PCP finally wrote me off on medical leave in March. I haven’t been able to work since and it’s crushing.
I was first diagnosed with Inappropriate Sinus Tachycardia in March by an electrophysiologist, followed by Postural Orthostatic Tachycardia Syndrome in August after a positive tilt-table test.
We tried every available medication and they either didn’t work or gave me such bad side effects that they weren’t safe for me to take.
In July I was finally diagnosed with Ehlers Danlos Syndrome, a genetic condition that affects the creation and quality of collagen in my body. It is my unifying theory of everything. It explains my easy bruising, my soft skin, my fairly severe gastrointestinal issues that I won’t even go into here (although they have gotten significantly worse this year), my years of knee dislocations and weird scarring, my chronic pain, my flexibility, and more.
It also means I’ll never “get better.”
So, planning a wedding while in the midst of becoming significantly disabled, losing my ability to work, and getting all these diagnoses was tough, to say the least.
On top of all that my now husband was struggling to break into his industry and was dealing with rejection after rejection after getting very close each time to getting his dream job. He also had some of his own health issues to deal with, from chronic foot pain to mild fatty liver requiring significant dietary changes. The weekend before our wedding he was offered his dream job as a video game designer and got to quit his job as a QA tester and take all his planned wedding vacation time and start the new job a week after the wedding!
So we had a lot going on.
I wanted to call the whole thing off and just go to the courthouse more times than I would like to admit, but ultimately I’m very glad we did it, even if it didn’t end up looking like I had expected it to.
So, how to plan a wedding while your life is falling apart:
1. Let go. Sit down with your fiancé. Decide what things are actually important to the two of you and cut literally everything else. We don’t care about flowers. We had no flowers at our wedding. It was still beautiful and we probably saved at least a couple grand. Also, I hate DJs, all of them, but especially wedding DJs. I used to be an audio engineer and DJs have no idea what they’re doing and have no business handling a PA system. We made a dinner playlist and a dancing playlist and our officiant (a close mutual friend that we would have fought over if we didn’t make her neutral) switched the playlists over for our first dance. There was more we cut, but those are some basics.
2. Really though, don’t waste a single second of energy on bits you don’t care about. No one will notice or care, and if they do, they’re there for the wrong reasons. THIS INCLUDES OVERBEARING PARENTS WHO ARE FORGETTING WHO THIS IS ALL ABOUT. We, thankfully, didn’t have that particular issue, but I’ve heard so many horror stories.
3. To follow that one, don’t invite people you don’t want there. It’s not worth the stress, the money, or your experience. Anyone who gets mad at you for not inviting them didn’t deserve to come anyway. Weddings are expensive and stressful and no one is entitled to an invitation.
4. Get a GOOD therapist, whether it’s a one on one therapist or a couple’s therapist for you and your fiancé. I can’t thank my therapist enough for all the work she did to keep me relatively sane through all of this. There was a lot to process and I don’t think I would have been able to enjoy any of it without her help.
5. Delegate, delegate, delegate. You cannot do this alone. Ask your friends and your family to pitch in with things you and your fiancé can’t tackle yourselves.
6. Take time to spend time with your fiancé WITHOUT talking or thinking about wedding planning stuff. We actually went so far as to schedule most of our wedding planning time and pretty much only talked about it at those times and made lists of what we needed to bring up at our “meetings.”
7. Don’t take it too seriously. It’s one day. It’s hopefully going to be a nice day, a fun and memorable day even, but it is only one day. You have a whole life full of days to spend with your partner, don’t invest all you have, financially or emotionally, into only one of them. It’s just not that important, and if you blow it out of proportion you’re way less likely to be able to relax and enjoy it.