Introduction
Hi there, I'm Erin. I am a wife to a great man named Randy, and we have been on quite the journey. Here we are. I really like him.
See, I've always been a little different. I've always joked around that I'm "that person" who gets whatever sickness there is to get. If there's a bug going around, I get the trashcans ready and load up on pepto. Someone has a sore throat, I use hand sanitizer every 30 seconds I'm near them. It's like my immune system goes out and hunts for illness instead of protecting against it! I mean, don't get me wrong...I'm not sick with colds and things that often, but weird things happen to me. I was once convinced that my life was kind of like "The Truman Show." In case you don't know what that is, it's a movie starring Jim Carrey, where his whole life is literally a tv show, but he's the only one who isn't "in" on it. His wife, neighbors, boss, etc., they're all actors, and he has no clue. His whole life is a 24hr reality show. Sometimes, things were so ridiculous it was almost absurd to think it was real life.
See, I've always been a little different. I've always joked around that I'm "that person" who gets whatever sickness there is to get. If there's a bug going around, I get the trashcans ready and load up on pepto. Someone has a sore throat, I use hand sanitizer every 30 seconds I'm near them. It's like my immune system goes out and hunts for illness instead of protecting against it! I mean, don't get me wrong...I'm not sick with colds and things that often, but weird things happen to me. I was once convinced that my life was kind of like "The Truman Show." In case you don't know what that is, it's a movie starring Jim Carrey, where his whole life is literally a tv show, but he's the only one who isn't "in" on it. His wife, neighbors, boss, etc., they're all actors, and he has no clue. His whole life is a 24hr reality show. Sometimes, things were so ridiculous it was almost absurd to think it was real life.
So yeah, things are weird for me. This past year has been particularly weird. Wonderful, but also weird. I fell in love with my amazing husband and in a whirlwind romance, we were married within a year.
So then we get back to the continental US and everything immediately begins to fall apart with my health. It started slowly, but soon enough I was in agonizing pain nearly every night. I would have shooting pains all over the place. Anytime I described what was happening, their first question was always "do you have fibromyalgia?" Not only was I having pain, but my hair began to fall out and I was ALWAYS exhausted. I could sleep anywhere from 3-14 hours and I would be the same amount of exhausted no matter what. It was beyond irritating. Not only that, but it was trying on a new marriage. I can only imagine what Randy has gone through, never knowing what to do. Most of the time, as I laid there screaming in pain, the only thing that would ease my suffering was heavy pain meds. It was a rough existence. After a ton of research, we were convinced I had lupus. Due to my blood clot, I had extensive blood work and I tested abnormal for the "Lupus anticoagulant," but you don't necessarily have to have lupus to test abnormal for that marker. Anyway, it set us on our way to hopefully figuring out what was happening with me. I had already been to a handful of doctors who just wanted to wait and see what would happen next and it was SO frustrating! I was looking for someone who would get to the bottom of things, not someone who would just speculate. So, it became obvious that my primary physician wasn't going to cut it anymore. I matched several of the criteria for people who have lupus, so I decided to track down a doctor in the area who specialized in internal medicine and also had a specialization in lupus management. My thought was, "if it's not lupus, surely he can figure out what it is..." and oh my gracious, I found my guy. I started seeing Dr. Darius Peikari and he is without a doubt the best doctor I have ever been to in my life...and I have definitely seen my fair share. In the first visit, he spent an hour and a half with me. It was incredible. I felt so great leaving his office! After describing what was happening, he kind of shared his thoughts and basically said there was a decent chance it was an autoimmune disease - most likely lupus. So, after a ton of blood work, nerve tests, and circulation sonograms on my arms, legs, heart and stomach, we discovered it almost for sure wasn't anything involving an autoimmune disease, diabetes, and a whole other list of things. It was so discouraging. I know he was even shocked! I've noticed that since then he's more conservative about telling me what he thinks is a possibility with my symptoms because even things that look like home runs can be fouls. Basically, the only thing the blood work showed was a severe vitamin D deficiency, so I take a supplement now. It was really discouraging, but Dr. Peikari kept trying. As the pain got worse and happened more often, Dr. Peikari tried to take preventative measures while he was trying to figure it out. So he prescribed a daily anti-inflammatory so I could stop taking harsh things like high doses of ibuprofen that can damage your stomach and I was also prescribed a blood pressure medication in case the issue was vascular. Since my blood pressure is already naturally low, I just have to monitor it to make sure it doesn't drop too low.
It began to look like I was never going to have a solution and Randy and I were starting to discuss the possibility of having to find a pain management center or something to continue living. Want to know a thought that will depress you? Think about pain that you will never be able to get rid of. Not only that, but I also have this sort of "brain fog" feeling where I kind of feel just exhausted and annoyed all the time. It's sort of like the feeling you get if you tense your head up for a long time and it feels super tense. It's kind of obnoxious. It makes emotions and conversation feel like such exhausting chores.
Then, something happened that changed everything. I was sitting on the couch one night and I had been feeling kind of dizzy that day, and suddenly the strangest thing in the world happened to me. I kind of zoned out for a second and then I started to feel as though I was slipping away from my body. Like my body was my shell, and I was inside, sinking into quicksand. While this was happening, it was like someone divided my vision into vertical, wavy lines. It was terrifying. The next thing I know, I was looking at Randy next to me and I started crying as I told him what happened. As he came and held me, I began praying because I decided that if I was dying, I wanted to be praying. Not to be dramatic, but I seriously thought I was dying.
The next time I went to Dr. Peikari, I described that sensation on a whim and it was like a lightbulb hit him. Seizures. The second he said the word, I thought, "but I wasn't shaking..." He explained that seizures could have caused everything and I needed to see a neurologist pronto for an EEG (brain test). So I go to the neurologist, who I was not terribly fond of, and he looks at me and says, "your neurological state seems exquisite. If [Dr. Peikari] hadn't suggested this test, I wouldn't even be doing it." Comforting. So I get the EEG done, which required a bunch of wires glued to my head, connected to a bag I had to wear for a weekend...Randy said I looked like the unabomber...
[In the mean time, I was in the hospital for something I'll get to another day and they discovered that I was on a medicine I was prescribed at one point for something it shouldn't have been prescribed for...so make sure you research all of your medications and find out what they're used for and why you're on them.]
So we get the test back and lo and behold, I have epilepsy. I literally never, ever thought I would hear those words from a doctor. It was super weird. It is super weird. I started taking Topamax 2 weeks ago and I feel better than I have in an entire year. It's amazing! God is SO good! I still have a lot to deal with, but I'm at least moving forward. Praise God.
So, I'm writing this blog to chronicle our journey. I have this overwhelming urge to share what has happened to me and I don't think that is a coincidence. I believe God desires to use situations like mine for His glory. It wasn't easy at the time, but many things make sense now. I never understood why God wanted Randy and I to be married so soon, but there is NO WAY I could have gone through all of this alone. He timed everything perfectly. It's so incredible. I mean, I suppose I could have with His help, but I'm so blessed that I didn't have to do it alone. I have recently been in contact with a friend of mine who has epilepsy and she has been the biggest help aside from Randy and my doctors in all of this because she has been in similar situations. And if my story can help or touch one person in a similar way, that would be amazing. That's why I decided to do this.
Hopefully, I can help bring glory to the Father through our journey.
Thank you for reading :)
Blessings,
Erin
Erin, I love your blog! You are going to touch others with your story, I'm sure of it! Love you!
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