About Me

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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Monday, April 8, 2013

On the inside, I'm junk.

Do you ever feel exhausted trying to take the best care of yourself? Do you find yourself envying others who don’t have any health conditions to manage every day? I do.

Just over three years ago, I was “healthy.” No medical diagnoses, no foods eliminated from my diet, no spinal cord injury. I got to wake up every morning and just LIVE. It was fabulous! There was no worry at nighttime about dying from hypoglycemia, no limitations on physical activity, no allergies to everything on the planet, no sleeping pills needed to ward off nightmares. I was just a happy, healthy person. Life was easy. I remember when I could just worry about normal-people things, like how to manage my time better, which shoes I should buy, which new restaurant to try.

From the outside I look like a normal, healthy person. There isn’t anything that stands out that would indicate I am anything other than “healthy.” But while I look normal on the outside, on the inside I’m junk. That’s the joke I tell people now. Things just don’t work properly. I’m like the car on the car lot that’s all shiny and buffed up, but then doesn’t start when you turn the key or has smoke billowing out from under the hood as you drive down the road.

The latest in the health saga came a few weeks ago in the form of allergic skin reactions. I had a “patch test” done at my dermatologists’ office. I had been having multiple skin problems, ranging from eczema on my chest and legs, to rashes on my face and neck that I couldn’t get rid of for long periods of time. The results came in at the end of that week, after wearing patches of suspected allergens taped to my back for 3 days, indicating lots of new allergies to some very common things; things that are very difficult to avoid, including an ingredient found in MOST shampoos, conditioners, bar soaps, hand soaps, body washes, dishwashing liquid, laundry soaps, household cleaners, and make up. I am also allergic to rubber- including rubber bands, my eye lash curler, rubber mats, rubber gloves (including latex), the rubber soles on tennis shoes, even certain power cords that are made from rubber, etc. I am allergic to artificial nails and most nail polishes. Also adhesives- including bandaids, but where this affects me the most is the fact I wear an insulin pump and a Continuous Glucose Monitor (CGM), both of which are attached with adhesive. I am also allergic to bacitracin, which is in all over the counter first-aid creams, like Neosporin.

My dermatologist did some research for me, and emailed me a 111-pg. document that talks about the allergies and lists what products I am able to use, broken up into categories like makeup, soaps, detergents, etc. The part that stood out the most to me is the last paragraph on the first page, which says:

“You were not sensitive to these substances for most of your life. Allergy develops from repeated exposure.
You were exposed enough times to these substances that you became sensitive to them.
You must remember that just because you weren’t sensitive to something in the past doesn’t mean that
you are not sensitive to it now. Your body has changed and is sensitive now to things that didn’t cause you
trouble before. You will be allergic to them for the rest of your life. You will always need to avoid them.”

I wonder, why is my body still continuing to break down? Allergies are auto-immune reactions when the body decides to attack healthy tissues when it is exposed to certain ingredients/chemicals/products. Why is my immune system so crazy? What can I do to make it not be so crazy? How can I prevent future immune system issues, like additional auto-immune diseases, or new allergies? The short answer I’ve been given over and over is that there is no prevention; there’s nothing I can do differently. And that scares me.
I copied the first page of the document to show you the substances I am allergic to. So basically, in addition to having to read every FOOD label for my celiac disease and diabetes, I now get the pleasure of getting to read every label on NON-FOOD items, to ensure they don’t have any of THESE ingredients (FUN!):

ALLERGIC CONTACT DERMATITIS
"Testing has shown that you have allergic contact dermatitis. This means that you are particularly sensitive
to even extremely small amounts of these substances:
Acrylates/Hydroxyethyl Acrylate/Lauryl Acrylate Copolymer
Acrylates/Hydroxyethyl Acrylate/Methoxyethyl Acrylate Copolymer
Acrylates/Methoxy PEG-23 Methacrylate/Perfluorooctyl Ethyl Acrylate Copolymer
Acrylonitrile/Methacrylonitrile/Methyl Methacrylate Copolymer
Ammonium Acryloyl Dimethyltaurate/Carboxyethyl Acrylate Crosspolymer
Bis-Hydroxyethyl Acrylate Poly(Neopentyl Glycol Adipate)/IPDI Copolymer
Butyl Acrylate/C6-14 Perfluoroalkylethyl Acrylate/Mercaptopropyl Dimethicone Copolymer
Butyldimethicone Methacrylate/Methyl Methacrylate Crosspolymer
C6-14 Perfluoroalkylethyl Acrylate/HEMA Copolymer
Carboxyethyl Acrylate
Cocamidopropyl Betaine
Dimethyl Acrylamide/Hydroxyethyl Acrylate/Methoxyethyl Acrylate Copolymer
Ethyl Acrylate
Ethylhexyl Acrylate/Methyl Methacrylate Copolymer
Hydroxyethyl Acrylate/IPDI/PPG-15 Glyceryl Ether Copolymer
Hydroxyethyl Acrylate/Methoxyethyl Acrylate Copolymer
Hydroxyethyl Acrylate/Sodium Acryloyldimethyl Taurate Copolymer
Hydroxyethyl/Methoxyethyl Acrylate Copolymer
Hydroxyethyl/Methoxyethyl Acrylate/Butyl Acrylate Copolymer
Methyl Acrylate/Methylene Drometrizole Methacrylate Copolymer
Methyl Methacrylate
Methyl Methacrylate Crosspolymer
Methyl Methacrylate/Acrylonitrile Copolymer
Methyl Methacrylate/Ethylhexyl Acrylate/Butyl Dimethicone Propyl Methacrylate Copolymer
Methyl Methacrylate/Glycol Dimethacrylate Crosspolymer
Methyl Methacrylate/Trimethoxysilylpropyl Methacrylate Crosspolymer
Polymethyl Methacrylate
Sucrose Benzoate/Sucrose Acetate Isobutyrate/Butyl Benzyl Phthalate/Methyl Methacrylate
Copolymer
Dibucaine
Hydroxyethyl Acrylate/Sodium Acryloyldimethyl Taurate Copolyme
methyl methacrylate / glycol dimethacrylate crosspolymer
methyl methacrylate / glycol dimethacryla
Hydroxyethyl Acrylate/Sodium
Acrylonitrile/ Methacrylonitrile/Methyl Methacrylate Copolymer
Acrylonitrile/Methacrylonitrile/ Methyl Methacrylate Copolymer
Acrylonitrile/Methacrylonitrile /Methyl Methacrylate Copolymer
Carba Mix
dibucaine (cinchocaine-HCl)
Soybean (Glycine soja) seed extract Hydroxyethyl acrylate/sodium acryloyldimethyl taurate
copolymer
2-hydroxyethyl acrylate
Cocamidopropyl Betaine Or Sodium C14-C16 Olefinsulfonate
Hydroxyethyl Acrylate sodium acryloyldimethyl taurate copolymer
Octylacrylamide/Acrylates/Butylaminomethyl Methacrylate Copolymer
Methyl Methacrylate/2-Ethylhexyl Acrylate Copolymer

You are so sensitive to these substances that if your skin comes in contact just one time with any of
them, you may develop a rash. Itching, pinkness, small bumps, or blisters may appear within 4 hours,
but usually starts 1 to 3 days after exposure to the substance.
The skin reaction lasts from 2 to 8 weeks, even if you don’t come into contact with the substance again.
If you have had many exposures over time, it may take 3 to 6 months for your skin to get completely
better after you start avoiding the substances. During those months, your skin will slowly get better, but
you will probably have multiple brief flare ups of your rash, even as it is overall improving. If you come in
contact with one of the substances again during that time, that can cause a significant set-back in your
recovery.
You were not sensitive to these substances for most of your life. Allergy develops from repeated exposure.
You were exposed enough times to these substances that you became sensitive to them.
You must remember that just because you weren’t sensitive to something in the past doesn’t mean that
you are not sensitive to it now. Your body has changed and is sensitive now to things that didn’t cause you
trouble before. You will be allergic to them for the rest of your life. You will always need to avoid them.
It is very important to learn how you can avoid the substances that cause your allergic reaction."


I am frustrated. I am scared. I am mad. I love life and I want to enjoy it. I will find a way to live with yet another obstacle. I know I am resilient and flexible. I know God will not give me more than he thinks I can handle. I know all these things. But I miss the days when life was easy and uncomplicated. I want to enjoy the same simple pleasures that others get to enjoy. And little by little, things are getting chipped away. I wonder, how much can a body handle before it just breaks down for good?



4 comments:

  1. I've definitely had moments in my life where I've felt this way. There's actually a song I really like called "She" that I posted to my blog a few weeks ago. It helps me when I'm feeling like I just can't keep going. I'm sorry for everything you're going through right now.

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  2. :( I hope you start feeling better soon. Your blogs definitely inspire me to take better care of myself, so some good does come out of your illness. I do not think your body is headed for a shutdown. I'll pray for you to have an easier time with your afflictions.

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  3. Nikki, so sorry to hear about this. I'll say it: this really sucks. However, if anyone can handle this, it's a champion like you. I just wish you didn't have to handle it.

    There are lots of people out here who support you, so if there's anything we can do, let us know.

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  4. Man that is tough Nikki. I know you are a strong woman who will get through this, but it still is not fair. Thinking of you!

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