Learning to take Life one moment at a time.

[Ang4upmich]

Hello. I am grateful for all here, because many times it feels I was dropped on a giant puzzle board with so many missing pieces.

Last month Diagnosed "officially" with behcet's . Suffering for over 15 years. Mainly prednisone treatments and kenelogg shots

(Causing severe osteo)

Im 48.

I am experiencing monthly cyclic flares for 8 years or more.

I get maybe 5 days per month where I feel like "ME" , like the healthy me i experienced...and then it starts all over.

Mine is

Blisters in mouth hurt but then they go away

blisters on palms & toes

Abdominal swelling, swelling of upper body severe

Bone pain in tops of feet , ankles to knees. Hurts to walk

Swelling and MS HUG to the point BAM..ribs break..almost all ribs have been broken on both sides. Every month..every flare..

The pain and torture of this is unbearable at times.

It gets to the point im in e.r. begging for help to stop it.

Prednisone has deteriorated my bones..my spine..

No Dr.s here help so they send me to U of M in lower Michigan

Where it is a struggle to drive.

Traveling like this is torture.

Its all torture actually..and i feel for everyone that experiences this.

Given 150 mg Imuran and colchacine ..been on it for a month now and my flare is starting...did i mention

Tingling pins and needles in hands, wrists, legs, feet.

Joint pain in knees, elbows..

What does One do but Pray for some Miracle...

Im losing it..I keep trying to stay in the moment but my moments hurt..except when i pretend..and live for my son, whom is Autistic..and He is what keeps me going and praying for Help..to stop this.

Feeling my body cant take much more.

Every month, no matter what I do or dont do , eat or dont eat..here it is..Sneaking up , invading inside..

I would swear I ingested some weird body fungus or bug living within slowly eating my body away..my body swells trying to protect itself..and Here i Am Experiencing this.

Learning I AM not my body , n oou r mind has really helped me.

Awareness of al l.j that is, has helped me.

Knowing I AM none of this , yet all of everything , jeeps Joy within , on the lowest of days.

I have 3 children , 1 at home..He watches me suffer..so I pretend I don't, but I don't think I will Be here much Longer. Im okay with that..if that is my fate..

I just want to have my body back from this " invader"

I do pray for a Miracle.

I pray for anyone and Everyone HERE, experiencing any Pain...

A MIRACLE.

BLESSED BE. THANK YOU FOR BEING HERE.

THANK YOU, FOR SHARING.

THIS IS MY 1st time reaching, telling and sharing my story..I hope i didn't bore anyone, I guess I could Just be " bypassed" lol.

Anyways..Be strong and Be the Light for others..I try to be also, and sometimes I need a boost..because I feel like I'm falling.

[sam0511]

I am lost for words really - I have experienced pretty much the same as you but no where near as bad - your story makes me feel like a fraud. I too experience flares monthly - getting less now I am older. My wonder drug is Azathioprine - I don't know what your alternative would be. I thank god every day for our wonderful NHS system. You will find support within this group and I just pray you will find some relief and help soon.

[Brichel in reply to sam0511]

I too have many of the same symptoms and like the other reply just not as bad as yours. I, too get so discouraged and have even wonders if I should stop all medications and let nature take its course. Then, I read something on this post that makes me take courage to fight on. Please don't ever feel you are boring us. We are stronger when we share. Best of luck .

[Ang4upmich in reply to Brichel]

Brichel. I dont like to know others suffer in this way or form, yet I also feel thankful another being understands me. I guess that's what support groups are for.

I have thought that many times about the meds. I even feel they are not even helping.

Im really really sick right now with a flare. When its at its strongest point, it literally feels as if I got run over by a car. I'm so frustrated.

I'm also exhausted. I feel I have to "beg" for help. Yes it is for me, but mostly I have to care for my son..I need to find a way to stop these flares.. even tone them...Prednisone works..on high doses..but after taper to 20mg it swells me in other ways and eats my bones up.

Loving what is. Accepting what is. This is my challenge...because I know resistance creates more suffering. So "fighting" makes it even worse..

Do you have any children?

Any suggestions?

What meds are you on?

Just curious..seeking any kind of hope for me or anyone.. I guess that's how we can work together.