I know ya’ll mad that I haven’t updated.
Don’t worry. I got a taste of my own medicine.
That’s what happens when you disappear for a few months to do your thing and leave people wondering, when will she post again? What happened? Does she not realize readers are waiting?
Yeah, well that’s exactly what I want to ask Taylor Swift. I mean what is this? You disappear for months—NOTHING. No instagram. No paparazzi pics ? No epic Fourth of July party at your New England beachside mansion?
CAN A FAN NOT GET A PICTURE OF YOUR GOD DAMN CAT, TAYLOR?
And then you announce that you have an album coming out and what? You just expect me to still be here pining for a blank space?
FINE. Fine. I’ll end this metaphor.
But I just want to say, in my defense, life over the past few months has been hard to describe with a few funny gifs.
Since I started this blog several years ago, you’ve seen me through a lot of ups and down. You were there for my initial diagnosis of dysautonomia and the surgeries, hospitalizations and life-changing medical decisions I’ve had to make since. You heard about how my disease upturned my life, my career, my friendships, and all of the ideas I had about what my life was going to look like as an adult.
You were there when I got my shit together. When I found my spot in the professional world, got engaged and then married to my now-husband, when I signed my first book deal, traveled again for the first time and saw through some of the goals I’d made for myself post-diagnosis.
You heard my struggles with creating a disease management plan for a disease that seemed to have very little rhyme or reason to it’s symptoms. You took my advice on things that worked for me, and heeded my warnings about the mistakes I made along the way.
I poured my heart out on this blog. I wanted my experiences to help other patients. I wanted to showcase what life really looked like with a chronic illness: the good, the bad, and the ugly.
And as I prepared to unleash my first book into the world I kept reading over my own advice over and over again.
You are not your disease.
When you write about your life with chronic illness, when you start to look at pieces of yourself through the lens of how chronic illness has shaped them, you can start to put other areas of your life out of focus.
And so I took my own advice. I took time to look at my life out of context of my disease. I wanted to refocus on the other parts of who I am.
It was a good move.
And it inspired a lot of other good moves, like:
- Moving out of our apartment and into a new place.
- Moving out of the non-profit sector and into a position as Manager of Patient Advocacy for a healthtech company.
- Moving out of my isolation and back into my social life.
All of these things, as they started to refocus, gave me a really clear view on how I wanted to manage my disease now. While it may have seemed like I was taking a “vacation” from writing about my disease I couldn’t actually take a vacation from experiencing it. As light and refreshed as the other changes in my life made me feel mentally and emotionally—my disease, as always, was along for the ride. Great things were happening in my life, but my disease was also happening alongside it.
The truth is that I was still pretty damn sick. Things came to a head after I had surgery for an intestinal blockage. For weeks I had been fainting, flushing, having allergic reactions to no stimuli. My blood pressure would rise and crash. I was going through a period of cluster headaches. I couldn’t regulate my temperature. My blood would pool in my face and chest and my legs would go completely pale and cold.
Many of the symptoms I had been managing with medications suddenly stopped responding to those medications.
With the help of my pain management doctor, my case was passed along to a genius diagnostician who agreed to see me. The morning I sat down to meet him I looked like this—even after taking a benadryl:
Like I said, I was in bad shape.
Together, we hunkered down for eight straight hours—pouring over my case, blood work and imaging from the last twenty years and in those eight hours we made more headway than all of the doctors I’ve worked with throughout my entire life.
He immediately found a pattern in my bloodwork and felt as if he had a good grip on what was happening. He was sure that my dysautonomia symptoms weren’t primary. Instead, he wanted to call my condition “immunovascular proliferation syndrome” referring to my overgrowth of scar tissue, circulation inconsistencies and weakened immune system. He didn’t know if this was a rare disease, an entirely unique disease, or a result of one of the possible diseases he wanted to test me for.
There was a lot to do. In the meantime, he immediately pulled me off some of my meds, put me on a host of vitamins and supplements, made some dietary changes for me, and gave me three front-to-back scripts of blood work.
I did the blood work right away. Two weeks ago we got results back. Because he travels so much, the results were snail-mailed to him—but they were sent straight to my email through my account with the lab.
And the results left me speechless.
Of the twenty or so tests he’d written for, six came back abnormal. Four of which I would never have expected. They were all pointing towards a rare endocrine tumor called a pheochromacytoma.
There are less than two cases diagnosed annually in the US. In order to confirm we were going in the right direction I had to do 24-hour urine test and wait another agonizing week for the results—all the while filled with anxiety about the fact that I might have a tumor growing in me somewhere. When the results came back they were not as cut and dry as we would have hoped. It still looked like there was something wrong with my blood and endocrine system—but we couldn’t say for sure if it was specifically this rare tumor. The fact that the initial tests had lit up for it was a good clue—but the weeks ahead will involve many scans, ultrasounds and catscans, more blood tests and a whole lot of waiting.
In the case that I do need to have a specialized nuclear medicine test, I need to be off of a medication I’ve been taking for over a decade.
AND I COULD NOT BE MORE DELIGHTED.
In less than two weeks I will have gone from having a laundry list of heavy medication to just my heart meds! I won’t sugarcoat it and say that the detox and abrupt pull-away from my treatment plan was easy—but it’s been worth the physical backlash.
It’s funny, I came to my pain management doctor over a year ago with the intention of getting of desipramene so that one day I might, possibly be able to get pregnant. But my body had a lot of unfortunate surprises for me over the last year. I felt like I’d not only taken a million steps backwards from the goal of getting off my medication, but that the idea that I one day could actually get pregnant felt completely out of my grasp. Now it’s come closer than ever before to being a reality.
And with all of that being said, I hope you’ll understand my absence over the last few months.
You know how they tell you that when you get in a car accident and you have to call someone and tell them what’s happened you should always start with, “Don’t panic—I’m okay but….”
I think that was my intention with the blogging break. Things were spiraling medically and it was a time where the only support I really needed was from those close to me. No pity. No concern. No added opinions to influence the anxiety and frustration I was already feeling. I just wanted to come out and see you all on the other side of the storm.
If you’ve come back hoping for updates on my book and what on earth is happening with it I have great news.
It’ll be in stores and on shelves March 1st! Stay tuned for lots of new posts, book signing dates and giveaways.