All about this strange disease described as one of the most baffling and rare conditions of this generation, this is my story. Through all the ups and downs of this disease I've maintained a stellar attitude envied by many. Even though this condition has plagued me my entire life it has yet to lick me. Now that I've been officially diagnosed I've managed to kick its pukey arse! This is how I did it. This is how I continue to do it.
Wednesday, December 13, 2017
Thursday, November 9, 2017
Learning To Live Like You’re Not Dying
Friday, November 3, 2017
Monday, October 30, 2017
Going To The Emergency Room Dressed As An Inmate
On my way out I heard a man say, "Her shirt says State Inmate on it." I figured he was referencing me, so I turned around. I saw he was standing outside an room at the e.r. I was at. He looked like a guard. My guess is he was guarding an actual inmate. I was simply in an inmate get up. I was supposed to have gone dressed up to a Halloween party. I missed it though. I ended up having a cvs episode and going to the emergency room.
https://youtu.be/9ovBfCnp-Dc
My doctor laughed about my handcuffs before he gave the order to the nurse to insert an Iv. Into me and give me intravenous Zofran and Benadryl.
Sure, I missed a really awesome party. Sure, I missed going dressed up. However, my emergency room visit was so wonderful.
I walked right in and told them I have cvs. They handed me a puke bag and got me into a bed right away.
In my experience, hospital beds are super comfy at first. They don't start getting uncomfortable until you're feeling better. That way you'll want to leave. I swear there's a science to it.
I remember earlier that day thinking I was coming down with an episode. I prayed that I wouldn't get one. It was then I heard a voice say, "You never know who you will meet when you go there."
And I did meet someone. I met an amazing nurse who had his own journey to wellness. Thank you so much for helping me.
To this day, I still go to the hospital when I start having an episode. However, I only have an episode occasionally. I am so grateful for this.
Happy Halloween :)
Wednesday, November 30, 2016
Why I Sometimes Thank Jerks for Their Comments
Even the most uproarious jerk has experienced this. You're out and about. You're living your life like you do and Bam! some person you don't even know has something to say about your clothes, your appearance, or my personal favorite: how you parent.
I don't have a lot of insight as to why people do this. I'm sure I'm probably guilty of doing this on occasion as well.
It's all in how you take it, I guess.
For me, the comments people say about my appearance, I use as a necessary gauge of my health.
Because I have an invisible illness, most people do not understand why I disappear for long periods of time or don't partake in activities that I feel are going to cost me my health i.e. late night parties, bars, extreme social situations. I've only lost a few friends over this. I much prefer hikes, bike rides, the gym, books, movies, and other online games. I've accepted this. And I do engage in more social activities as my illness improves.
Before diagnosis, I called my extreme debilitating flus my Fiona disease. One of the main characters from the movie Shrek, Fiona, is cursed with sometimes being a beautiful princess and the rest of the time a transformation occurs that causes her to be an ugly ogre.
When in the first phase of a cyclic vomiting episode my appearance begins to change. Like I am morphing into some hideous monster, my skin sometimes develops an orange cast to it, acnes and rashes appear all over my body, and my hair no matter how much I wash it appears greasy. People who don't suffer from an invisible illness are simply struck by how different I look. They don't understand. Before diagnosis I would get comments like, "You look tired," or "You look like you're having relationship problems."
I still don't understand that one.
Before I knew what was happening to me this, of course, was a little soul-crushing. I simply felt like I wasn't good enough. Then I would disappear for the next week and quite possibly end up at the Emergency Room.
This continued until my diagnosis. Then things changed. As my body began to heal, my face started to glow. My hair stopped looking so disheveled. No one commented about my appearance looking in anyway less than tolerable.
Pretty good sign my life changes were working, huh?
The real kicker with my illness, however, is it has triggers. One of them is stress. They've linked one cause of CVS episodes to be raised cortisol levels in the body.
Here's from one of my favorite research sites, The National Institute of Diabetes and Digestive and Kidney Disease:
Specific conditions or events may trigger an episode of cyclic vomiting:
-emotional stress, anxiety, or panic attacks—for example, in children, common triggers of anticipatory anxiety are school exams or events, birthday parties, holidays, family conflicts, or travel
infections, such as a sinus infection, a respiratory infection, or the flu
-eating certain foods, such as chocolate or cheese, or additives such as caffeine, nitrites—commonly found in cured meats such as hot dogs—and monosodium glutamate, also called MSG
-hot weather
-menstrual periods
-motion sickness
-overeating, fasting or eating right before bedtime
-physical exhaustion or too much exercise
For the full article visit here.
Because of this, I do not have toxic relationships with people. If you're someone who's reading this wondering why I stopped talking to you after an argument or some sort of discourse please understand that I walk away and shut the door on arguments. I'm big on forgiveness, and the reason I never reached out to you is because reaching out to you might land me into the Emergency Room, and not because you knocked a few teeth out like you may have wanted to. I simply can't do that stuff.
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| Here's a photo I took of biofeedback specialist Dr. Myron Thurber for a magazine. He didn't remember me, but I am so glad I met him. |
While doing my exit interview, the physical therapist asked me if I was having trouble sleeping. I answered yes, but not because I was in any pain, because I was having nightly panic attacks.
After the interview, she introduced me to a gentleman currently getting his doctorate in something called biofeedback. She set me up with several sessions with him.
In a darkened room, he put these thimble things on my fingers that had wires coming out of them and connecting to a computer in front of me.
For the next several weeks, a few days a week I would sit in front of a computer screen and learn to control my blood pressure.
The tool used was a video game. The sensors placed on my finger tips read my blood pressure. If my blood pressure was too high a floating rock going horizontally across the screen would go up. Too low and it would fall down. My job was to keep the rock floating across the screen. This taught me to control my blood pressure and my stress level.
He explained that my panic attacks stemmed from me slipping to my subconscious right before sleep. At this moment right before slumber, a person can't move their limbs. Sort of awake, sort of asleep, and super paranoid about not being able to move, I panicked. These panic attacks I was experiencing were causing all sorts of imbalances in serotonin and other hormones because of the quick fight or flight response or release of adrenaline.
By learning to control my blood pressure, I was able to maintain my stress level during that vulnerable time when a person falls into slumber and stop my panic attacks.
So how does this help me now?
For the most part, I can control how stressful things affect me.
For example: After a vacation to the ocean this summer we broke down still several hours from home. During this experience, I started laughing uncontrollably. My husband even commented, "Tammy this is really serious."
"I know, I know. I'll call a tow truck," I said while laughing hysterically.
Let's just say the car breaking down was the least stressful thing that has happened this year. I'm only human and I'll say that the stress of life has begun to affect even successful biofeedback patient me.
Lately i've started getting comments on my appearance like, "You look frazzled," or "You look stressed." Finally yesterday I realized I was having a hard time calming myself down. And I started thinking about the little comments tactless people sometimes say. I realized I wasn't in control anymore. So I reached out. I did some self-care and finally, I calmed down.
Thank goodness for people and their little jerk comments. Without them, I might never see that I'm losing the battle with stress and that my body as a result is about to have an abdominal migraine. They are my gauge to my health. So thank you. But only when the biofeedback stops working.
Monday, September 19, 2016
What Are Mitochondria?
That's the food we eat, the nutrients then taken from that food, the body then supplied with energy from food. So if the mitochondria aren't working correctly nothing could go wrong, right? Wrong. Mitochondria Dysfunction is showing to be quite a big deal--especially when it comes to those unexplained autoimmune diseases that keep popping up.
One of those diseases, Cyclic Vomiting Syndrome, happens to be the autoimmune disease that I was diagnosed with three years ago.
Once I found out I had a disease and not just a weaker immune system that caused me to get stronger flus, I did what Mark Whatney did in the epic film The Martian, I scienced the heck out of my illness.
Because my illness is linked to dysfunctional mitochondria, is seemed completely logical to me to focus all my attention to my mitochondria. Well, I'm not cured. A scientist will have to do that, but I went from three Emergency Room visits per year, to one in the last three years. That's pretty awesome, considering I'm just a journalist who happens to be the daughter of an engineer and nurse who grew up in farm country. I should add that duct tape and wire fencing was a consideration for curing my disease, however; I thought better of it and started exercising, taking enzymes, and eating a healthy diet.
Food is medicine.
I first heard about mitochondria when I read the book A Wind In The Door by Madeleine L' Engle author of the epic science fiction novel A Wrinkle in Time "Mitochondria are tiny little organisms living in our cells. That gives you an idea of how tiny they are, doesn't it?"
...
"A human being is a whole world to a mitochondrion, just the way our planet is to us. But we're much more dependent on our mitochondria then the earth is on us. The earth could get along perfectly well without people, but if anything happened to our mitochondria, we'd die."
- A Wind in the Door by Madeleine L'Engle (1973)
Some pretty freaky insight for a book written more than 40 years ago.
Not only did reading this book as a child give me an insight into something I had never heard of, it created a memory that as an adult would grow into a fascination that has for a time cured me of my chronic illness. That's the very definition of sparking a child's imagination. Thank you children's book authors. You do more than you know.
Mitochondria are really that simple and that important. While I'm in no way cured of my disease, my symptoms have been essentially abated for now. All I did was focus on maintaining the health of my mitochondria. Every day I focus on eating a healthy diet, taking enzymes like Co-Q10 and L-Carnitine, and doing aerobic exercises.
Mitochondria my be little, but they also are showing to be quite a big deal.
Thursday, September 8, 2016
Coping With Chronic Illness While Everything Goes Up In Flames
| For some reason a raging wildfire ripped through the Valleyford Cemetery, but did not burn the flags. |
Valleyford On Fire!
| This apple tree that sits just north of Stoughton shows where the fire jumped the road and had it not been for diligent farmers and firefighters could have moved north and destroyed several homes. |
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| My view from the ravine where we evacuated. |
| Whether this pole was replaced after the windstorm in 2015 or the recent fire, it does show how destructive fire can be. |
| One of the houses that burnt down. |
| One of many signs created by thankful citizens of Valleyford. |
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| This was what I saw from my house the day the fire started. |
| The fire line |
| The Valleyford Cemetery after the fire. |





