A spoon full of sugar...

Good Morning friends,

I thought today may be a good day to start trying to explain my illness.

I am that person you see getting out of a car with a handicapped sticker and you wonder why they get one "They look healthy"

I don't limp, need a cane, or wear prosthetics.

I have a silent disease.

I can fake well, seem fine, look healthy.

When I really hurt all over, head to toe.

There really isn't a spot on my body that doesn't hurt at some point in the day.

My vision is worsening, my weight is increasing, my health is spiraling.

You will see me with sores on my lips, boils on my skin, acne, dry mouth or rashy.

This is my reality.

There is no cure for this disease and it is very rare.

Wikipedia uses this definition

Behçet's disease or Behçet disease (/bɛˈtʃɛt/), sometimes called Behçet's syndrome, Morbus Behçet, Behçet-Adamantiades syndrome,^[1] or Silk Road disease, is a rare immune-mediated small-vessel systemic vasculitis^[2] that often presents with mucous membrane ulceration and ocular problems. Behçet's disease (BD) was named in 1937 after the Turkish dermatologist Hulusi Behçet, who first described the triple-symptom complex of recurrent oral aphthous ulcers, genital ulcers, and uveitis. As a systemic disease, it can also involve visceral organs such as the gastrointestinal tract, pulmonary, musculoskeletal, cardiovascular and neurological systems. As the disease can affect nearly every organ in the body, other conditions such as vasculitis, fibromyalgia, migraines/central nervous system problems,^{[clarification needed]} eyesight problems, tachycardia and joint pain and swelling are also commonly linked to Behçet's Disease.^{[medical citation needed]} This syndrome can be fatal due to ruptured vascular aneurysms or severe neurological complications.^[3]

And unless you have a strong stomach don't look up pictures.

I have had this most of  my life but have been in a remission state until it got switched on about 11 years ago. 2 1/2 years ago while I was under massive stress it  reared its ugly head.

I have been having a "flare" for that entire time, and I was formally diagnosed with this about 2 weeks ago.

I had wanted to get better, but unless God sees fit I will never be rid of this.

May people have great advice, and I appreciate your concern. But, diet, exercise, weight loss cannot cure this. Those things yes will help, but at this point there is no cure.

I can take medications but most involve weight gain. And there are many complications with them, and many things I have to have tests on before I can take them.

I also have heart issues, joint issues, neurological issues, lung issues, and many other things that are not part of this disease also.

It is going to be a balancing act.

So what now you ask?

Well I pray and believe God knows what He is doing.

I believe I won't be this way forever.

I change my life style.

eating , exercise, not over doing things.

I have to have less stress, and my strength is less.

So every day when I get up I then can plan my day.

It is so frustrating, because if you know me slowing down isn't like me.

I can do maybe 2 big things a day. ie. go to the store, and for lunch.

I tire quickly and have tons of Doctor appts.

I have no less then 7 doctors I have to see nearly weekly.

If you wonder how I manage this may help,

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I am not telling you all of this for sympathy. But to help you understand the new person I have to become.

For years I hid the pain in fear that if others knew they would think me a hypochondriac or crazy.

Having answers helps. Friends who have spent time understanding this are so important. Those of you who have taken the time to understand thank you so much.

I can no longer work in the normal sense, my face painting business is perfect though. a few hours a week only and the pay is good. 

Thank God for that.

My family (Dave and the kids) are learning to cope.

My extended family don't really care or haven't taken the time to understand.

I know there is a plan God has in mind, for me.

I believe in miracles, but also in reality.

I am not claiming this disease by speaking it out.

I am educating and building strength for this fight.

I cannot fight alone.

Dave is amazing, but I know he worries.

The kids don't really understand.

So I need you to support us also, because this doesn't just effect me, but everyone around me.

Hugs are great just not to tight.

Encouragement is always needed

Physical help is welcomed, chores are hard.

But most of all prayer . For health, strength, peace and understanding.

Thank you for all your understanding and love.

Be blessed and filled with hope today.

God is in control

Always

SusziIm