Dear 2018: Please Be Gentle

Dear 2018: Please Be Gentle

I enjoy when a new year rolls around. I feel free to try new things and get myself back on track with life in general. But to be honest, I’m quite apprehensive about 2018.

We watched the ball drop in Times Square at midnight (from the comfort of our 68°F house instead of the 10°F outdoors). As we toasted each other with champagne, David pointed out that even-numbered years tended to be better for him. It was then that I realized that for the past several rounds, even-numbered years have been an all-out disaster for me, particularly in the medical diagnosis department.

My last good even-numbered year was 2010. I got a job, graduated from pharmacy school, got married, moved, and passed my boards, (all in that order, strangely enough) and all in the space of two and a half months. It was truly a banner year, the culmination of everything I had worked hard for years for.

2012

In 2012, I mysteriously lost 15-20 pounds in the span of the year without even trying. On my slight 5’3” frame, this was a serious problem. (My lowest point was a shocking 98 pounds). I also had abdominal pain, stopped menstruating, and kept having paresthesias (tingling) in my arms. I freaked out, thinking I must have ovarian cancer. But following an appointment with my genius primary care doctor, a few lab tests, and a biopsy, I received a diagnosis of celiac disease. I started a gluten free diet a few days after Christmas 2012 and never looked back. Until recently…

2013

(In 2013, I re-injured my already injured left knee while hiking at the bottom of the Grand Canyon. It was an old dance injury from 2002 I had never bothered to have fixed. Since my knee wouldn’t let me finish the 30 miles of hiking, I had to be airlifted out of the Grand Canyon with 5 miles to go. I had surgery three weeks later. But that’s a story for another time.)

2014

In 2014, I was completely blindsided by an endometriosis diagnosis. I was hospitalized for two days after having been (mis)diagnosed with a tubo-ovarian abscess. (According to my OB/GYN, his TOA admissions are almost never actually TOAs. The radiologists just get overexcited.) I had a failed ablation surgery in June, which left me worse off than before the surgery and desperately searching for relief. After some research, a leap of faith, a 700-mile flight to Atlanta, and a successful excision surgery in October, I was back on my feet with minimal pain seven months after the pain snuck up on me that April morning. But it was a wild and exceedingly painful ride that I will never forget. If you want to know the full story, you can check out my endometriosis page here.

2015

(In 2015, I went on Clomid for three rounds after multiple failures in achieving pregnancy. All I got out of it was a hole in our laundry room door and four ovarian cysts for Christmas, ranging in size from 2 cm to 5 cm. Owie.)

2016

If I thought 2014 was bad (and it was), 2016 was when all hell broke loose from almost day one. On January 2nd, the migraines started. I was initially given a diagnosis of status migrainosis. After two months of that nonsense, it eventually led to a brain tumor diagnosis. (Talk about zero to sixty.) After further suffering for another three and a half months on medications I couldn’t tolerate, I saw a neurosurgeon in July. He said that while prolactinomas (my type of tumor) rarely need surgical intervention, he compassionately recognized that my quality of life was nonexistent. As such, he suggested a TSA (transsphenoidal adenomectomy) to remove the little bugger. The date was set for September 8th.

Diagnosis
Surgery with Dr. Sinervo in Atlanta

At the same time, crippling pelvic pain made a return to my life throughout the early spring. The pain had actually started again insidiously the previous August and been made worse by my ovarian cysts: Eenie, Meenie, Mynie, and Mo. The cysts were nearly gone by spring (except one, which I think was Meenie). I was adamant that it was not endometriosis causing the pain, despite the fact that the radiologist said it was. (Even though no surgeon is perfect, I had so much faith in my excision surgeon that I really didn’t think he would have missed anything. Plus, my excision case was very simple and straightforward with no surprises.) Not only that, the pain felt different this time, like an adhesion (scar tissue).

We made the decision to return to Atlanta in July for another surgery (my third endo-related surgery.) The etiology of the pain was a complete (and rare) surprise, but my wonderful excision surgeon fixed the problem! (And no endometriosis was found!) Despite the correction of the problem, however, I still have moderate to occasionally severe chronic pelvic pain of unknown etiology. This is most likely due to adenomyosis, which I do have a suspected diagnosis of.

After going through a pre-op rigmarole with labs and scans and physical exams two weeks prior to my scheduled brain surgery, we received some unwelcome news. The MRI revealed an aneurysm on my left internal carotid artery right next to the tumor. (The surgeon must pass the surgical instruments carefully past the carotid arteries to get to the pituitary gland. Accidentally popping the aneurysm while trying to remove the tumor would cause me to have a stroke.) Another day, another diagnosis. A meeting was held about my case and my neurosurgeon consulted a neurovascular surgeon colleague for input. There was a 50/50 chance of canceling the surgery. But my neurosurgeon decided he was willing to proceed.

Diagnosis
48 hours post-brain surgery!

My surgery went forward on September 8th without a hitch. No CSF leak, no diabetes insipidus. I did have a migraine the afternoon of the surgery, but we knew that would happen. Due to my history of migraines, the likelihood of experiencing one after having my skull cut open and sinuses abused was almost certain. I was discharged with no problems 48 hours after the surgery.

To make another long story short, I had a procedure to stent the aneurysm in November.

For a detailed explanation of what happened next, please check out this post. It’s too much to explain here. But my body wasn’t done self-destructing yet. By the beginning of October, I knew something was wrong, but none of my doctors believed me. It wasn’t until a few days before Christmas that I paid a visit to the emergency room due to tachycardia, dizziness, lightheadedness, and shortness of breath.

2017

(In 2017, my diagnosis of Postural Orthostatic Tachycardia Syndrome was made official following round after round after round of diagnostic testing. I saw a POTS specialist in July who is handling my POTS care now. He is of the belief that the primary cause of my POTS is celiac disease, which is the third leading autoimmune cause of POTS. Those paresthesias I felt back in 2012 were the celiac disease antibodies attacking my nervous system, which is now damaged enough to cause POTS. POTS is also more common in individuals with pituitary disorders. We’re still tweaking my medications almost six months later, trying to figure out what combinations and dosages will make me most functional. It’s a never ending work in progress and he told me it could take us up to a year to get it right.)

2018

I really hope there won’t be much for me to write about disasters of a healthcare sort this year. I know even-numbered years seem to have it in for me.

I’m additionally worried because of my apparent “song of the year.” Every year I put my iPod on shuffle on January 1st and the first song that comes up is my “song of the year.” Silly and stupid, but funny. Well, this year the song of 2018 is “Any Other Way” by We The Kings. Here’s the first verse and chorus:

I am wide awake
And I’m standing tall
Up against the world
Up against the wall
Between the love and hate
They can hardly wait
To watch the hero fall

You could give me hell
You could give me death
Break before I bend
I will have revenge
Fire through my veins
I will fan the flames
Until my dying breath

‘Cause I will never go down
Any other way (way)
I will never go down
Any other way (way)
Gasoline pumping through my veins
Dancing on top of the flames
I will never go down
Any other way (way)
Any other way

But dear 2018: please be gentle!

💛ribbonrx

11 thoughts on “Dear 2018: Please Be Gentle

  1. Big hugs. Your 2014 and 2016 definitely were scary and eventful! I am wishing you a year much more similar to 2012 this year! Don’t read too much into your song of the year, it could very well just be a random coincidence!

    1. Thank you! Don’t worry, I’m not actually putting any stock into the song thing. It could be interpreted as either a positive or negative song depending on how you look at it anyway! 😂 Hugs to you too!

    1. I think we’re all in need of a break from our chronic bodies at this point! I hope 2018 is a good year for you! 🤗

  2. Our brains do love finding patterns…I’m guilty of this myself 😉 Don’t worry everything will be just fine 🙂 Wishing you lots of peace and good days this year! x

  3. Wow, you have been through so much. I can only begin to imagine how incredibly tough these times have been. I was so angered when I read that ” I knew something was wrong, but none of my doctors believed me” – this has happened to me countless times, and just goes to show we need to listen to our bodies and be assertive when it comes to our health. Really wishing you all the very best for 2018 – I hope it is a healthier, brighter one for you! xx
    Caz 🙂

    1. You’re right, Caz- it’s so important that we pay attention to our bodies. I wish doctors understood that it’s really very easy for even a person who does not have chronic illnesses to tell when something is wrong. I hope 2018 is a great year for you as well! 😊

  4. To Sheryl’s point, we do like patters, but it doesn’t mean they have meaning. I’m looking forward to reading your blog in 2018 and seeing all the progress you’re gonna make. Happy New Year!!!

    1. Haha, yes, I have always been a pattern-finder! But I know it doesn’t really mean anything, it’s just an interesting observation. My odd-numbered year’s haven’t exactly been stellar either! 😆 I hope 2018 is a great year for both of us!

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