This is not my normal type of Blog post. I feel I have to tell my story (the whole story) in order for me to continue to heal and move forward. This is the only way I can get all of the information out without having to defend myself or get questioned in between the whole story (or forget any details).....
With the 1 year anniversary of my Dad's passing approaching this Sunday, and my body doing some funky things this week, I decided it was time to face my fears..... and BOY.... I have a lot of them.... The most persistent right now and rearing it's ugly face is Somniphobia , which I will talk about a bit later.
It's only been about 9 months since we even heard the words "Lyme Disease" out of the Doctors mouth. The first reaction was... "What the Hell?" Next was a mission to educate ourselves. After that... educate those we love and then everyone else. There is a certain amount of Fear that resides in all human beings relating to 'Spilling the Beans' or publicly speaking out. It is time for me to tell my story.....
Scott joined the Air Force in 1997, and was stationed at Elmendorf AFB in 1999. He had a pilot slot and was on top of the world, yet was troubled with the necessity to sleep up to 18+ hours a day. Scott decided to have a Sleep Study performed and was diagnosed with Hypersomnia (Excessive Daytime Sleepiness with no known cause). He then was medically disqualified from his Pilot slot and thus the battle began.
I met Scott, in 2002 in Anchorage, AK. I was 22, he was 25. We are going to leave out unimportant details of the last 13 years and just focus on the medical history. When I met Scott, he was a driven, motivated, exciting man with a love for everything. He was just tired.... It wasn't so bad in the beginning. A nap on the weekends for sure, but with a day job, you must move forward and take responsibilities seriously. As time went on, Scott would come home from work and fall asleep in the recliner in the living room until I woke him up to come to bed. Excessive sleepiness is not the only issue Scott had going on but it was the most prevalent. He also had bouts of depression, brain fog, rib and joint pain, and a chronic cough. Due to his 'diagnosis', from 2002- 2013, he was on and off so many different pharmaceutical cocktails to help his 'Sleep Disorder' - I couldn't even count how many or tell you what they were. Only the fact that they weren't working.
In 2004, I started getting Migraines that would last a few days at a time and reoccur sometimes twice a week. I tried every over the counter medication I could get my hands on to relieve these pain monsters, finally finding that prescription 'Relpax' at about $50 per dosage (with insurance) was the only thing that helped. After several months of this, I realized I was going for broke with the constant need for this pain relief and there had to be a way to prevent it....... I heard about an anti-seizure drug called Topomax that was supposed to help prevent Migraines. Brought it up to my MD, and he said it was worth a try! Started weaning myself onto it that next day. By day 3, it was time to up the dose a bit. The morning I upped the dose, I had what I can tell you was one of the scariest mornings of my life. I, am one of the 0.1% of people that have the 'rare' side affects. I went to work feeling odd. That is the only way I can describe it... odd. By the time I pulled up to my office, I felt maggots crawling under my skin. I sat in the parking lot with the door open and still sitting in the drivers seat with the car still on and freaked out cause I had 'locked my keys in the car'. Of course, I hadn't. I gathered my wits and went into the office. I sat down at my desk and started feeling the whole world close in on me. Like literally, I felt like I was in some kind of clear box and I couldn't communicate anything going on in my head. In a sheer moment of clarity, I dialed up the doctor's office and exclaimed to the nurse (who happen to also be my neighbor) "I need to know if I can stop taking this medicine! It's making me CRAZY!" The nurse said: "I'm calling Scott to come get you NOW. You need to go to the ER!" I hung up quickly and threw myself on the floor, in hysterics, having a full body panic attack. Scott picked me up and brought me to the ER where they said I had to let it get out of my system. Needless to say.... that was the last time I took Topomax. In 2006, By the hands of an Angel, I misplaced my oral contraceptives (which the pharmacy wouldn't replace until the next month).... I realized mysteriously my Migraines were gone. Like.... GONE. Something about the hormones in the pills was doing something bizarre to my neuron receptors in my head. I don't pretend to understand why, but I do know that was the last time I took oral contraceptives!
In 2006, shortly after the Migraines debacle, I started having severe Heartburn coupled with massive stomach pains, which I referred to as 'Gut Rot'---- like hot, sharp rocks were tumbling around inside my stomach. and in a ridiculously short amount of time, gained around 30 pounds. Scott and I had just gotten engaged, and I was preparing for our wedding. I felt like a bloated cadaver, ready to pop at any given moment and I didn't know what to do. I went back to my MD and he performed a sonogram of my torso and some labs on my blood. The diagnosis was 'Fatty Liver'. This basically meant that my Liver wasn't processing much of anything and thus why I had gained so much weight. I immediately adapted a 'Clean Diet' -If it had a label- it didn't go in my body. This didn't really solve anything. It was this point that I developed the Somniphobia - more specifically, 'Fear of Dying in my Sleep.' I literally felt like I was dying on the inside and didn't have great answers as to what was really wrong. I would lay down to go to sleep at night and could NOT turn my brain off. I would work myself into a frenzy and lay there with extreme anxiety until I was finally so exhausted I fell asleep. As I look back on this time of my life, I can recognize so so many Lyme symptoms that I was completely unaware of- I had no idea that these things were not NORMAL.
In 2008, Scott and I moved to Idaho. With a fresh start to life, Scott started doing extensive research on what in the world could be wrong with him..... Oh you can not even imagine everything that we have tried.... the money we have spent, or the energy that we have wasted. We went through the first year in Idaho addressing my 'Digestive Issues.' I had ulcers, fissures and a hiatal hernia. We wanted to have a child and could NOT get pregnant. The MD I found in Idaho suggested that I would likely be able to conceive if I lost 20 pounds. I had no idea how I was going to do it. I felt like crap and I didn't have the energy. I asked myself "How badly do you want to have a child?" I created my own special diet (based solely on what I was eating) and lost 17 pounds in January of 2009. I started feeling a TON better and by July of 2009, we were pregnant. I had an EASY pregnancy - except for the last 3 months where I vomited around 5 times a day because of the hiatal hernia. I delivered naturally and quickly and our son Tyler was born completely healthy in March of 2010.
2012- The Shit Hits the Fan. The entire year of 2012 is almost a blur to me because it was so evil. In April, I had a root canal that I reacted badly to.... Maybe no relation, but 3 days after it, I felt like I was having a heart attack. I was sent to the ER where they released me saying I had GERD. Get real. Reality: I was having serious heart palpitations from low blood sugar, and exhaustion because I hadn't eaten anything in 3 days. It was completely unintentional (not to eat). I could barely swallow water and was apparently subconsciously not eating. I googled some things, realized I had Dysphagia caused by an Esophogeal Stricture and called my Gastroenterologist to schedule a Dilation procedure. 2 weeks later, I had the Dilation and everything seemed fine in our world. My Dad was diagnosed with Cancer in the Summer. In July 2012 I started having random hip pain. The Sciatica was debilitating enough that I started going to Physical Therapy and continued that for about a year. The PT, would give me temporary results, however the Sciatica was more than just a pinched nerve. In November, I had an Open Septo-Rhinoplasty to repair a severely deviated Septum- causing problems such as reoccurring Sinus Infections, Regular Ear Infections, and clenching my teeth in my sleep which then was leading to headaches and also cracking my molars (yeah, I currently need 6 crowns because of this). .... Horrible recovery but the outcome... amazing. I couldn't believe how well I could breathe! Then in December, due to stress and well, mostly stress and overextending myself, I had another bout of Dysphagia. Another Dilation procedure on Dec 23rd and GOSH I was looking forward to 2013!
2013- More of the same. Day by Day, Hour by Hour.... Just get through life. One moment at a time. I received a call from my Dad on October 25th- 'Saying Goodbye'..... I got on a plane a few hours later to Alaska and spent the next week with my Daddy. The Cancer was spreading. All I could hope for was a miracle and to spend some time with him. Together with my siblings, we formed a family Christmas in Alaska, knowing it likely would be Dad's last.
2014- January 6th, Scott gets laid off.
Sunday, February 16th, 2014- I received a call from my brother that Dad was in the hospital and 'wouldn't be released'. I called the hospital and had my last on Earth conversation with him. He told me that he thought this was 'It'. I told him I loved him and I was going to miss him and goodnight. We flew to Alaska that Friday morning. I got to see him one last time- rub Lavender oil on his feet, and give him a hug and hold his hand. He passed the next morning, February 22nd, 2014 at 11:11 am. The stress of my fathers passing put my symptoms into an outrage. I started having Full Body Vibrations that led to heart palpitations and anxiety. (I still, seriously, did not even realize this was happening.) I was all over the place. Couldn't concentrate, always just generally felt like garbage. Grief brought out a lot of this disease....
June- Scott goes to a local Naturopathic Doctor to get yet another opinion. A Live Blood Cell Analysis is performed and after seeing Scott's blood, the Doc says: "Now I'm not a betting man, but if I was, I'd put ALL my money on Lyme." OMG... an answer! A real one! I can still remember the exact moment when Scott told me he had an answer. He said: "Well, we have an answer, but I don't know if that's a good thing.... Lyme Disease." We spent the next few weeks reading absolutely EVERYTHING we could get our hands on about Lyme. What a freaking MESS! No, this was NOT the answer we wanted! Through more research, we realized it was absolutely necessary for me to get tested as well. And wouldn't you know it. Spirochetes in my blood too! How could this be possible? Oh the time we wasted treated what we didn't have! It was like our lives were all of a sudden flashing before our eyes! How could we manage this? There's no cure, no real treatment that works available and little to no education or awareness about it out there! We felt lost, hopeless, and destroyed. I called my Mom in early July and asked her to come help. I didn't even know what I needed her help for, I just felt like our lives were a disaster and I wanted my Mommy. She came right away. We heard about a place called LymeStop in Coeur D'Alene, Idaho. We managed to get appointments in December for both Scott and I. A specifically memorable moment in Dr Smith's office.... We were going over my paperwork during my first appointment. There was a question on it that stated: How is this affecting your life? My answer was simply: "This is a life not worth living." I remember watching the doctor kind of shake his head sadly, because he truly understood what I meant. It was then that I started to cry uncontrollably. Not because I was sad, but because I knew in my heart that he was going to help. That his reason for being on earth is to help people affected by Lyme.
Do we feel better?
This is a loaded question. I don't know what 'normal feels' like. All I know is an absence of symptoms that I was aware of.
In a LOT of ways, the answer is YES. In other ways, we are worse. It can take up to a whole year to really feel the full affects of this treatment we received. Scott sleeps less and has a way better outlook on life. His Brain Fog and Mood has leveled. My Brain Fog and Hip Pain virtually disappeared..... until Monday. I feel like the upcoming anniversary of my Fathers passing is making me flare. My body won't work, my legs don't respond to my brain. I have such bad body vibrations, I feel like I am on the edge of passing out all the time. I can't concentrate barely at all, and the exhaustion I feel.... Can you imagine how much energy it takes to write a check? For a normal person... virtually none. For me? I feel like I just ran a marathon.
One of my fears is rejection. Ever since my husband and I were diagnosed with Chronic Lyme Disease, we have dealt with an array of 'Nay-Sayers', from old friends, to close family, as well as (of course) strangers. People who think they know more about this disease (that WE have) and think they have the right to tell us what is best for us and what we should do. This disease is enough on it's own to send someone to a Psych ward, but to then lose your support system on top of losing your mind, body, job, and seemingly everything else good in your life is unbearable. It is a constant fear that due to Lyme being so cliche, political, and in the 'unknown' category, that those in my life will decide it's too much of a hassle to care.
Do I want Sympathy? Hell, no.
Do I want to inform and educate people about Lyme? You bet your ass.
There are 80 Million Americans at risk of getting Lyme Disease. Do you think you can escape it? Only 30,000 new cases of Lyme Disease are reported to the CDC each year, however that is highly underestimated. The lack of accurate testing and unreported cases of Lyme make the number to be reasonably suggested at approx. 300,000 new cases of Lyme every year.
It took Scott over 14 years to find an answer and he was actively looking for one. What about those that aren't looking for an answer? Like....me? That didn't even realize some symptoms were symptoms at all? That just feel like crap and don't know why, or don't know where to start? Or those that are treating a 'capture all diagnosis' like Hypersomnia or Fybromyalgia? Lyme mimics so many other diseases and the symptoms come and go as they please affecting any weak spot in your body it can. Don't ignore your body, and don't think for one second it can't happen to you.
The Future for us?
It is what it is.
One Day, One Step, One Minute, One Moment, One Breath at a time.