April 28, 2010

Dealing with Behcet's Disease and Learning Forgiveness.......

 I have a very rare auto immune disease called Behcet's.  It was a long, long road to get a diagnoses.  I was told my symptoms where all in my head, I had Crohn's disease, IBS, Lupus, RA, Mental Illness, some other rare connective tissue disease.  So when the doctor got the last set of biopsies back and it came back "consistent with Behcet's Disease",  I had a little trouble excepting that as a true diagnosis.

For the last 7 or 8 years I have heard you have Crohn's, you don't, you do, you don't , and going through many Upper GI scopes, Colonoscopies, Biopsies,  CT scans, x-rays,  many blood tests.  To taking drugs that cause cancer yet helped some.  To the many years of on again off again Prednisone (a steroid),  I am just a wee bit leery of all doctors.   I am not celebrating my diagnosis like I did when they thought I had Crohn's disease.  I was extremely happy and relieved  to have a name and answers to my symptoms,  I felt like a human with an illness not a nobody, with something always wrong, and then have it torn and ripped away (figuratively) over and over again, I just don't want to go through that again.

So now I have this "new" diagnosis that makes sense, biopsy report to back it up and out of whack blood work to suggest an auto immune disorder. But I had all that with my Crohn's diagnosis.  The thing that is different this time is that the skin biopsy didn't come back with Crohn's or Lupus but suggests Behcet's.  Is that really going to be enough from the doctors to not change their minds again???   I hope so. 

My drug therapy consists of: 
                                             Methotrexate once a week (a chemo drug)
                                             Vit. D once a week
                                              Folic Acid supplement everyday but Methotrexate day
                                              Immuran (immune suppressant) daily
                                              Propanolol daily (migraine control)
                                              Protonix daily (stomach acid controller)
                                              Oracea (for the skin issues)
                                              Flexeral (a sleep aide)
                                              Non Aspirin Pain reliever (for Joint pain) daily
So As you can see I take a lot of medications.  I have a list just as long of stuff I can not take because I am allergic to them.  I am a big wimp when it comes to pain but will only seek ER treatment when I can't control things myself.

 So today after waiting two weeks for yet another test result to come back  to find out why all the sudden I have kidney stones, I find out that one of the drugs listed above is causing kidney stones to form because my potassium levels are low.

I am in this place where I am glad they found out that I have kidney stones and how I am getting them, but this another part of me is like,  "Oh my word another thing that has gone wrong with my body."  

 I  wanting to scream at the ER doctor who yelled at me she almost (not quite) called me a drug seeker a few weeks ago told me my pain was nothing more than I constantly had, she screamed at me and now I want to say SEE I WASN'T FAKING IT!!!!!!.   To back up a few steps a couple of weeks ago I went to the ER my second trip that weekend because I was in pain, the type where I was doubled over puking because of the pain.

Instead of reaching for my phone,  I am here searching the scriptures on forgiveness, letting go, compassion, humility,  because who knows, that ER doctor probably had a ruff night that night, but I so want to hold onto this and not let this go but I know I have too.

"Thus says the LORD of hosts: ‘ Execute true justice,  Show mercy and compassion everyone to his brother." Zechariah 7:9 (NKJV)

"Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience" Colossians 3:12 (ESV)

"He has showed you, O man, what is good. And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God." Micah 6:8 (NIV)

And those are just the verses on compassion I came across,  here are the forgiveness ones:

"The Lord our God is merciful and forgiving, even though we have rebelled against him;" (Daniel 9:9 NIV)

"If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." ( 1 John 1:9 NIV)

"For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins."  (Colossians 1:13-14 NIV)

Whoa --- hold on a minute this is talking about my sins, what about the wrong that I suffered, I was the one that was wronged wasn't I .... Then I hear God's gentle voice telling me that if I hold on to this bitterness towards this ER doctors, I am sinning,

"Before destruction the heart of man is haughty; And before honor goeth humility." Proverbs 18:22 (ASV)

"You rescue the humble, but you look for ways to put down the proud." 2 Samuel 22:28 (CEV)

Ouch that last verse hit home.  I was trying to put down this doctor because of her smug know it all attitude she gave me that night, but if I let go let God, Forgive then His peace is mine.

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall."
(Psalm 55:22 NIV)

"For if ye forgive men their trespasses, your heavenly Father will also forgive you: but if ye forgive not men their trespasses, neither will your Father forgive your trespasses."
Matthew 6:14-15 (KJV)

"Get rid of all hard feelings, anger and rage. Stop all fighting and lying.put away every form of hatred" Ephesians 4:31 (NIRV)

So why is letting go so hard??? Because I am human who is a sinner forgiven by God's merciful grace.  Praying for my heart not be hardened by this is the easy part, letting go of the hurt this situation caused not so easy.  But Jesus is here helping me step by step.  Letting GO, and letting God isn't easy for me.  I love control. But my faith and trust lies with God's love and not my own selfish ways.  As soon as I asked for God's help in this HE was faithful and my load got lighter!

Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 NIV

"Cast your cares on the LORD, and he will sustain you; he will never let the righteous fall."
Psalm 55:22 NIV

When I am honest with God telling Him I can't let go without His help, He was faithful and took my burden upon himself.  My load is lighter now. My heart isn't as bitter as it was and I know God is carrying me through this trial.

As I posted yesterday God's light shines even when a storm is coming or in this when the storm has come and gone.
 I took this picture yesterday (04/27/10) at one of the over look pull outs near the Cove Palisades in Central Oregon. I was out taking pictures for the fun of it a new passion of mine.  I was hoping to get a pretty sunset with vibrant colors.

As it turns out another storm had just come over the Cascade Mountains and was about to dump more rain and hail on us!  To me this is just as  pretty as the sunset I hoped to capture. Because it reminds me that even in a storm God's light will shine through! 


I hope that these posts encourages you in some small way. 


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