September 10, 2010

Behcet's Disease/Christian Walk

It started off with me waking up with that all too familar throbbing on the right side of my head. It was 2am, I get up take some medication and go back to bed and prayed for sleep.  I did finially dose off because I remember silently shrieking when the alarm went off.  I quietly get up I didn't want to wake up the husband as he worked late yesterday,  and prayed that the hot blast of the shower beaning down on my head would help relieve the pain. It didn't!  I took non asprin pain relivers with my morning meds.  I would go to work pretend all is great, go home at lunch take more pain reliever, and lay down with the heating pad and maybe nap for 5 or ten mins.  Rush back to work and when I finially was home at night I would take the migraine medication and again pray for relief.  

This would be a daily routine for about 8 days before I couldn't take it anymore
 and called my doctor and said this wasn't working.  So I took sometime off work
to go to the doctors office and of course my doctor was out of town,
 and I had to explaine to the doctor who saw me what Behcet's Disease is and what is like for me.
He prescribed the steriod pack for me. It is a pack of steriods taken for six days the first day you take 6 steriod pills and quickly taper off the drug. 

Little did I know that this was just a sign my Behcet's was in full action.  I always have an ulceration somewhere, my joints get stiff when it is cold no biggy. Normal life for me. I tend to ignore the little things the many bruises, small scratches that turn into painful sores, and night fevers.  My doctor bless his heart knows that I will ignore the small stuff.  So what if I had a migraine for two weeks and then all this other stuff crops up, I don't have a normal life.  But I intend and try to live it to the fullest I know how.

So yesterday I woke up with that all too familar pounding in my head again. Not to bummed about it becasue I knew I had a routine 8 week scheduled doctors appointment. At the appointment the doctor walks in the room and says you look terrible why didn't you come in sooner?   I said because I knew this appointment was near and I didn't want to be a nuisance since I had just been there a week or so ago. He asked me how bad my headache was today and then said never mind it has to be bad just looking at you then
He just shook his had and clucked his tongue.  As if to say you are very stuborn.

No not stuborn not really.
I just don't want to waste vaction time on this disease,
 I don't like missing work and pay to go see him so he can tell me what I already know.

He asked me a few questions and told me that he was putting me back on prednisone short term to try and kill my over active immune system. He gave me the why did you wait 8 days to call w
hen I had the migraine and I should of called when things were obviously getting worse
and not better even if the headache was mostly gone.  Blah ...Blah... Blah ....
Nothing  I haven't heard before.

He does the routine blood draw and orders other tests to be done to see how active the Behcet's really is. Tells me to go to the pharmacy and get the prednisone today and then go home and rest!

Ahhh Prednisone the steriod drug that most people with an auto immune disease hates. 
The side effects for me are:
 nausea, extreme moodyness, the jitters, the moon face, the never ending hunger and the ever lovely fast weight gain, that doesn't come off after you stop taking the drug.

But this is one of the only drugs with anti imflamitory properties I can take since my body reacts badly to Aprin, Mortrin and every other NSAID on the market. It also works the best during a flair.
 I am tired, my headache is back, and I am extremely moody. Happy, sad, extremely angry, all in a 1 min segment.Wow where did that just come from extrem emotional roller coaster.

So now I am dealling with the jitters and gritting my teeth at this angry feeling. But to be honest this could of been avoided had I just gone to the doctors sooner when the skin issues started a month ago. The first sign that my Behcet's is active again.

The I get that ahhhhhhaaaaaa moment with the light builb going off when you finially get something. Usually for me it was a joke told to me three days ago but this one is more deep.

How many times do we ignore God's quite voice?  You know He is telling me something yet I choose to ignore it. Shurg it off because it is no big deal. OR I know He is asking me to do something and I rationalize it or make up exscuses not to do what He wants.  Today it hit me I treat and deal with my Christian Walk like I treat and deal with my Disease. Then complain, whine and throw a fit because
my life isn't what I had hoped for.

I take my medications/read my bible daily.
But do I do other things like eat right/ apply what God is asking of me and do them correctly?
Do I see the signs and then act on them nope I ignore them in most areas of my life.
-The begining:
 Ulcerations or skin rash appears
 Action: shrugg it off for just one of those things that just happen.

Christian Walk
The Begining
The small quiet voice speaks to me.
Ignore it or shrugg it off as just a passing thought

The next stage
Things are spreading a little and are a little more irritable to handle
Home remidies I can Handle this on my own. it will go away.

Christian Walk
God word speaks to me what that small quiet voice said.
Argue with God and tell Him I have things undercontrol

Scars and more sores, joints, and digestive system complaining loudly.
More Home medication, Self Help and cut back on some things.

Christian Walk:
Life isn't going according to my plans things are rocky and out of place and God isn't as near anymore
Self help and Home remidies after all I can fix this.

Out of control Multi system melt down, no energy, nothing left
Breakdown and call the doctor and complain because the treatment course is worse then it should of been.
I submit, and let the doctor take over the care.

Christian Walk:
Lonely, Life out of Control, Rock Bottom afraid.
On my knees breakdown, and cry why God why me. Fix this now.
What you want me to do what?  Oooohhhh ok I break down
I submit to God's will.

Slowly gets better
Christian Walk
Slowly gets better

Remission is achieved I can handle things on my own.  Again the cycle begins.

Either my Disease or my Christian walk is out of sink. I like being in control of things. they both can be  out of sink at the sametime or at differnt times when I give up control.

Lord help me break this cycle.  Help me see the signs in my life and act accordingly before things are totally out of control and I have to give up out of shear exhaustion.  This is not how you planed our life or our walks with you!  Guide me to a healthier approach to my Christian walk and physically well being. Help me to listen better and recieve the information correctly.  - Amen

Prayerfully Your Sister

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