"Happy" Behcet's Day I guess

Good Morning friends,

Today is International Behcet's Awareness Day.

I have been posting a lot of info and appreciate you who have taken the time to learn.

I also have been thinking how to describe my pain to you without whining or complaining.

I in no way want pity nor am I asking for sympathy, my 

goal with today's post is just to give you a taste of my pain and let you walk a step or two in my shoes, if you will.

So just for today I'm going to attempt to explain my illness and how I feel both physically and mentally. 

I'm just going to go from head down.

Head

No less than 1000 tiny blister spots on my scalp

Thinning hair

Occipital Neuralgia (swelling in the back of my head)

Headaches 

constantly - not migraines but Complex headaches which is like 15 different headaches at once, and yes I understand how you feel when you have a migraine, but times that by 100 and you might understand mine (sorry for ranting)

Eyes- 

drain constantly, crust over, feel dry, sore and burn, sores on nerves will lead to blindness, double vision and floaters constantly.

Ears- 

Ulceration sores inside my ears deep cause them to itch and be sore, may cause hearing loss.

Mouth and throat

Loss of vocal strength (sores on vocal chords)

sores in throat

Constant ulceration's on tongue and lips

Tooth pain due to filling constantly falling out.

acne looking sores that are like boils and take weeks to go away.

Chest and abdominal areas and back

Joints are swollen and painful to move (like RA)

skin has sores or boil like sores

Age or brown spots spreading

several sores that will not heal

scars from previous sores

Ripped rotator cuff

sores under breasts stretch marks rip open 

chest pain (constantly watching for blood clots or aneurysms)

Bi-jimney (heart beats out of sync )

abdominal pain (constant like appendix rupture feel)

irritable  bowel like symptoms  

fear of lesions on organs and shutting them down

Lungs (toxic mold poisoning but made worse by disease)

extra weight from medications

vaginal sores (grape sized ulceration's and small lesions)

Anal sores as described above

several organs ie gallbladder, hysterectomy removed 

Spine swelling and pain

Lower body

hips and legs

all joints swollen and painful

Sores all over

 muscle weakness and tears easily

ie, torn Achilles tendon in foot

Knees (weak and swollen)

foot pain (painful to walk)

Mentally and emotionally

Depressed and anxious

exhaustion and chronic fatigue 

Insomnia 

feel alone like no one understands

Frustration because I cannot move like I used to

Anger cause my mind says yes and body says no

Worthless because to clean or cook is nearly impossible

Finishing a task is inevitable

Being active for the kids is rare

Crazy because meds and stress make the symptoms worse

I know I shouldn't get angry when others hurt and  I don't unless they say "I understand how you feel"

unless you have this disease you cannot fathom

Frustration having to choose my activities for the day.

Like a bad friend or family member because there are so many days I can do nothing.

Sad because my mom fought for years to get a diagnosis and i got it finally just after she died.

And sad she isn't here to make me feel better.

I get angry faster due to pain.

I yell and swear cause I'm so frustrated with it all

I hate good days cause I know tomorrow wont be

Brain fog and forgetting, words and dates and names.

Stroke like spells TIA's

This is how I feel just today. I know one thing for sure that God will sustain me, and use me and will someday use my story. I know I have it good compared to others, I am blessed. I know I will be whole and well someday and if that is in Heaven so be it. I know I have an amazing husband and kids that love me and take care of me. I know my momma is with Jesus and that is where she always longed to be. I know I have friends despite their own struggles, uplift and encourage me daily to keep moving ahead, and who take me to er or sit with me at the hospital. Who make fun of me and who make me smile, and forgive when I have to say no and who also say no for me. 

I have so much to be thankful for.

I also pray that whatever struggle you are facing whether it be physical or emotional, God will also sustain you, and use you for His glory.

May Gods grace shine on you today.

I hope this brief glance helps you understand this disease

and helps raise awareness for all the silent diseases,

and when you see someone in a handicapped spot you don't judge, because

every step is hard some days.

Always

Suszi