My Health Doesn’t Define Me

I don’t talk about my health too often. I don’t like to. Not because it is some big secret but because it is usually followed by sympathetic eyes and, “Oh, I’m so sorry.”

 

If you look at me from the outside, I look normal…

and that is both the beauty and the torture of hidden diseases.

 

Hiding behind a mask of good health

realworkhard / Pixabay

 

Once someone finds out it tends to define our relationship. I can’t explain it but something almost always changes. Whether it be pity, waiting to find out if I’ll use my health as an excuse, concern, trying to accommodate me…and the list goes on.

Even those that love me most have to treat me differently because sometimes I literally cannot. It tears me up inside to tell the girls, “No, mom can’t do that”…and then they remember.

Several years ago

Before it became a fad diet, I was diagnosed with gluten sensitivity. Not full blown Celiac Disease, but a related disease known as Dermatitis Herpetiformis. The symptoms are different but the treatment is the same–abstain from all gluten containing foods.

That’s something to tell a 19 year old. No more eating out with friends because restaurants did not cater to gluten issues–a gluten free menu was unheard of. Even going to the grocery store became a challenge. As long as I stayed gluten free, I was good.

Fast forward 6 years. My pregnancy with The Inventor was a challenge. It wasn’t one of these on your death bed pregnancies, but after she was born we found out some things that terrified me. My uterus did not like the baby growing inside me and it is an act of God that there weren’t serious complications with either of us.

Something unknown happened during that pregnancy that set my auto-immune system into chaos.

tpsdave / Pixabay

My body continued to decline. The tip of my toe started to turn black. I couldn’t ignore things anymore so I started the doctor rounds. This doctor for this, that doctor for that, all running tests and hoping that they could fix me.

Very long story short: I have Raynaud’s Disease and something called Undifferentiated Connective Tissue Disease.

In non medical terms: My body overreacts to temperature changes and can go into a frostbite like state at random times…as for the rest? They don’t know. My symptoms are varied but fall in the connective tissue disease family. Symptoms related to arthritis, lupus and Sjogen’s to name a few.

So my immune system hates me, attacks me at random, and virtually anything can set it off.

I had bad side effects from medication. Instead of making myself sick so I didn’t have to be sick, I decided to try lifestyle and diet changes. Little did I know how much that would change the way I live.

Over the years I’ve complied a list of things I should avoid if I want to live a normal healthy life:

  • Temperatures below about 68 degrees
  • Touching cold things
  • Quick temperature changes. Going from the hot outdoors into an air conditioned building in the summer or a heated building to the cold outside in the winter.
  • Weather changes of any kind
  • Heat above about 80 degrees
  • Sun and UV rays
  • Gluten
  • Dairy
  • Soy and all soy bi-products
  • Artificial sweeteners
  • Too much sugar
  • Too much caffeine
  • White Rice
  • Stress
  • Certain forms of exercise

And the list goes on, and builds on itself often.

Those things don’t always trigger a flare each time. Some like UV exposure and gluten are guaranteed while temperature changes are like playing the lottery–I never know when I’m going to hit the jackpot.

My symptoms can range from fatigue and arthritis to gut issues and nausea. There are days when I am normal and there are days when it hurts to move, feeling stiffness and pain through every last tendon and joint within my body. And then I wonder…did I eat something wrong, did I do too much, is the weather changing, am I stressed, what set me off this time?

Why does my body hate me so much?

This is not who I am. Yes, I get down sometimes. Sometimes I curl up and cry. I feel so left out. I want to take the girls for walks anytime they want to go. I want to be able to participate.

We’ve cancelled a family vacation simply because I was sick. When we do plan trips, we have to plan them around my health. It is my reality.

 

BUT…  

It doesn’t define me.

I choose to make the best of it.

 

Spring is my favorite season. I love seeing the sun and all the beautiful flowers. I love opening the windows and feeling the sun heat up the house.

I wear SPF 70 sunscreen inside my house so I can open the curtains.

I have adapted our menu and food to fit my needs. Do I miss cookies and sweets? You bet I do. I’ve learned to make a chocolate frosting my body can handle and spoons work just fine.

I have lost 40+ pounds since the latest round of diet changes. In part because I’m not eating dairy or most sweets.

There are weeks like this past week where my body is sore and doesn’t want to cooperate. There are times when I forget my sunscreen and I hit that ever lovely brain fog. I cannot go on, my body screaming stop.

I get to take a day off. I watch movies, catch up on a book, and take a nap. A good old lazy day dictated by my body at random.

 

This is who I am

I adapt

I adjust

I live

 

~Crystal

 

Right now in my patch of grass:

LoggaWiggler / Pixabay

  • We had a great weekend celebrating Easter and what Jesus did for me.
  • Another week and a half and then the girls are done with curriculum. I think I am more excited than they are.
  • Spring is here! I could put this in my patch of grass every day for the next few months. It brightens my day all season long.

 

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