Ever read a scary story. The kind where you think you know the ending, you think you know what is going to happen only to be wrong every single time. That has been my life for the last five years.
April 2008 I went to the doctor for a wide range of symptoms that made no sense. We were in Texas and they tested for everything, but when everything came back normal I called my mom. I went over everything with her and she told me it sounded familiar because someone else in the family had something like it. They had Lyme’s disease.
We called my doctor and explained. He swore being in that part of Texas it was not possible, but they never factored in my weekend trips to Tennessee to visit with my dad who was terminal.
CDC states no one from our area has gotten Lyme’s from a tick…. They are wrong! I tested positive for it, took the meds, and got better. However, I can tell damage was done because I still had revolving symptoms (They were minimal compared to what they were before).
Sept. 2011 My husband came home from deployment and we decided to take our first family vacation that wasn’t a trip to see family. We packed up our car, buckled in the kids, and picked up my brother then we headed down to Florida. I spent nearly every year at Disney growing up, and I wanted my kids to make sure they got to see it at least once.
I still remember my left arm hurting and going numb. I remember talking to my aunt-in-law about it before we got dressed for the day.
“Tell your husband.”
Her words echoed because I knew that is what I should have done, but I didn’t want to ruin the trip. We boarded the buses and rode to Epcot where I sat next to my son and went up in the big ball. I had what I call mini black out spells. They lasted a millisecond, but I could still feel them. Waves and waves of feeling hot flashes and feeling like I was waking up every time I blinked. My chest began to ache and I started to panic.
This is the part of the story where you would think I was having a heart attack, but I wasn’t.
When we got off the ride my husband suggested we get something to eat because I didn’t really eat on the way down to Disney (14 hour drive). We went to one of the restaurants and got a burger and grapes. I ate, but I still felt horrible and the chest pain was growing. I walked away from my family. Leaving them to enjoy time at the park. I took the monorail and went back to the Shades of Green where we were staying. I tried gas relief, Tylenol, and even antacids but nothing was making me feel better.
I laid in the bed and slept until my family returned for dinner. We ate at the hotel only for the same mini-blackouts to happen with every puff of my cigarette or bite of my food.
My husband rushed me to Celebration Hospital where I left from fear three times. I just wanted to go home. Back to the hospitals I knew. Back where my family and friends were. Back where my father was buried so if I did die I wouldn’t be a burden as my family tried to ship my body home. My husband had to get them to sedate me to admit me.
Test after test was ran and the only thing they could come up with was a gallbladder attack. I knew better because I knew my body. I signed out AMA and traveled to Nashville to go to Vanderbilt. It wasn’t home, but they had handled my dad after our local hospital misdiagnosed him. They are considered the best hospital within a 100-200 mile radius. People travel from all over to be seen there, including me.
By the time, I walked in the doors of the emergency room my BP was excessively low, my potassium was dropping, my blood sugar was in the double digits close to my age, and every test they ran came back that I was dropping.
Still think you know what is happening to me? Do you know where the movie is going next?
Six days later Vanderbilt couldn’t find anything more than what the hospital in Florida found. Discharged and wanting to see my kids I left.
I have only walked out of a hospital in tears one time. That was that moment.
I followed up with my doctor who explained that something had changed. With every puff of my cigarette I could feel my heart stop, so I quit smoking that night. A full pack of cigarettes in my hand I lit one in the parking lot of the hospital and that beating stopped for just long enough for fear to settle in. That was all it took to walk away from smoking after 11 years of the bad habit.
Fast Forward two years. They decide to remove my gallbladder. I went along with it because they made promises of how I would feel completely normal again. Only that was a lie.
I have had recurring revolving symptoms from chest pain, numbness in the body, abdominal swelling, dizziness, elevated liver enzymes, positive d-timer (no clot), low iron, and more. It has only gotten worse over the five years since that first hospital stay. To the point now I can’t walk without assistance. I always bounce back, sometimes it takes a few days to a few months, but I am on the third month and I am not bouncing back this time.
My labs are good except for a little anemia, and a positive ESR, but my doctor assures me with some iron I will be fine.
I read this article online about a woman who also went to Disney and got sick. She has POTS. I welcomed the article because she is just like me. I’ve been accused of being paranoid, taking drugs, being a hypochondriac, and many other things, but just like her there is something wrong.
Reading her story was like reading about my own life. Only I usually bounce back. (Just waiting for the bouncing back part currently).
I haven’t gone public with the severity of this and have tried to hide it as best as I can. I have lied to people to get out of obligations. I have dropped signing events when I am bedridden. I have missed visitation with my oldest son when he does get to come into town because I am too weak to get up. I have even missed deadlines, many many deadlines because I am too sick to even type. My family has spent more hours inside an ER than we have spent with our extended family.
I wasn’t going to go public with this, but after talking to my husband I felt that the world (people who read this) deserved the truth. You all deserve to know why I sometimes go silent. You as my family, friends, and fans deserve to know that I am not ignoring you, avoiding you, or even hiding from you. For the author part of my life I leave a book order form on my website so if you miss seeing me at an event you can still get my books. For the family part of my life I make sure my kids are loved, educated, and I try to keep them from worrying about me. The rest of my life I take in stride. I do what I can when I can and hope that others will forgive me when I can’t and fail to do something for/with them.
I asked at the beginning of this post if you have ever watched a movie and never knew where it was going even though you thought you did?
That’s the story of my life.
If I have bailed on any of you… I apologize. I am truly sorry for letting you down.