An Introduction to Being Complicated

Hi, I’m Chrissy and I am a medical zebra. Well, that makes it sound like we are in the basement of a church somewhere. Ummm, let me see if I can explain… You see in medical school you are taught when you hear hoofbeats to think horses not zebras. Meaning to look for obvious answers to peoples problems not rate ones. Well, I’m here to say that zebras do exist. And complicated ones at that. But I’m getting a head of myself….

I experienced a large amount of sprained ankles in my teen years. Even tore some tendons. At the age of 30 I was told I had arthritis up and down my spine. No one questioned it. I went into early labor with both my kids, was on strict bed rest with my son because of the amount of times I went into labor. I even lost a baby and was then told that I’d never be able to carry another child to term, yet no one could give me a clear answer as to why, other than my cervix was “too stretchy”.

In 2014, after 8 long years of my son crying in pain, especially after gym class, we finally got answers. Someone finally listened. And I was shocked, as I was given answers to all my issues as well. The diagnosis….Ehlers-Danlos Syndrome, a rare, genetic, connective tissue disorder. No cure.

Those who know me know that I am a researcher, so I went home and learned everything I could about this disease. It wasn’t until several years later that I went to my own geneticst for my official diagnosis. When I got mine, I was shocked to learn that we not only had Classical type II, but we had Vascular crossovers, which explained so much more! However, it was also scary to hear that as vascular is the life threatening one.

Between taking my son to doctors appointments two hours away and myself three hours away, we spent a lot of time traveling and a lot of time in and out of doctors offices and having various tests done. All to hear the same thing. There is no cure. This will get worse. You have to monitor your heart closely. It will eventually start affecting every part of your body.

No cure. Now, it is rare, but it can happen where it will go into “remission” for a period. Some people get lucky and never come out of remission, others not so much. My son, is currently in a remission state, and as his momma I am so happy for him, but he has to be careful, because he is still a zebra.

So, I know what you’re thinking, that’s not too complicated, sad, but not complicated. And you’d be right. That’s only the beginning of my journey….

In July of 2018, I began talking to an amazing man. We were texting while I was on vacation and made plans to meet up when I got back. We were inseparable. Six weeks after we had begun dating, my momma, my kids and I flew out west for my Grams memorial service. It was a quick trip, flew out on a Thursday and back on Sunday. After that trip, I had a hard time shaking the jet lag. A few weeks went by and I knew something wasn’t right. I called my doctor and she got me in right away. She ran some labs and my B12 came back really low, so I began B12 injections, but they weren’t working. I was dizzy, weak, tired, my heart rate was crazy high after climbing just a few steps. I had an upcoming neurology appointment at Cleveland Clinic for a headache that wouldn’t go away so my doctor told me to talk to the neurologist about my symptoms.

The neurologist was a sweet old lady, who reminded me so much of my Grams. She explained that she suspected she knew what was going on with me but it was not her area of expertise so she referred me to a different neurologist. As far as the headache that wouldn’t go away, she diagnosed me with a rare headache disorder known as Nummular Headache Disorder. I have a headache every single day in one area of my head. It never goes away, and some days are worse than others. (Side note: I have gone on to be diagnosed with several different migraine types as well. I have on average 25 migraines a month.)

So I go see this neurologist and he takes my blood pressure and looks at me and says that people with that low of blood pressure are usually on their death bed, not sitting up laughing and smiling. He later noted in my chart that I was the “most joyful patient”. I will never forget the look on the PA’s face when he had to tell me that there was nothing more they could do for me, because my body had rejected all the meds we tried. I looked at him and smiled and said “it’s okay, God’s got me”.

The diagnosis POTS - Postural Orthostatic Tachychadria Syndrome. POTS in and of itself is very treatable. However, when you mix it with the type of Ehlers-Danlos that I have, it becomes complicated, hence The Complicated Zebra.

Just like Ehlers-Danlos, POTS can go into “remission”. And I was so blessed that a year and a half ago, mine did. The past year and a half, I have felt like I had my life back! It has been wonderful! And then, everything came crashing down. I started noticing some symptoms. At first, I ignored them (denial, maybe?). But then more symptoms appeared, and then my husband noticed them. So I called my doctor. (Side note: I have moved and now have an amazing team of doctors at Yale New Haven Medical)

It was confirmed, I am out of remission. Once out, it’s rare to go back in (but not impossible), and with me being complicated, things will get aggressive. My amazing team has a plan in place to help slow things down, at least that’s the plan, anyway.

I had such big plans…I was getting ready to start a Real Estate Transaction Coordinator business. There’s so many places my husband and I want to go and explore. Our daughter is getting married in September. So many plans. So many dreams.

And we have decided not to let this stop us. We didn’t have a typical dating period or even engagement period. Ours was spent at hospitals, doctors offices, emergency rooms, not all the fun memory making things couples do. I got sick SIX WEEKS into our relationship and he STAYED. He still proposed. He still married me. And he is still here. These illnesses robbed us of so much, we decided we aren’t going to let that happen again! We are going to LIVE LIFE! We are still going to take the trips and do the things. We may have to make some adjustments. I may be using a cane again, I may be in a wheelchair, but we are still going to do them! The only thing I am not doing is the business. We did decide that I need to not have that stress (part of the plan to slow it down is reducing my stress-HAHA).

So there you have it, my story, The Complicated Zebra. I will continue to share parts of my story here, at least once a month. Have questions, reach out! Until next time….stay rare….