Ken and I went to Brighton and Ann Arbor on Monday for the appointments I had scheduled with my scleroderma doctor and U of M dermatology clinic. Because of the long drive, we decided to make the trip down on Sunday night and stay in a motel. That worked out perfectly....and our motel was just a couple of minutes from my first appointment. (yay)
I'm going to attempt to fill you in on my progress.....but forgive me if it gets little wordy!
My scleroderma doctor is going to increase the medicine (cellcept) that is an "auto immune suppressant". She wants to remain aggressive in this treatment so the disease does not go "internal". Also because of the breakdown in my skin in certain areas....due to calcinosis http://www.sclero.org/medical/symptoms/skin/calcinosis.html
she is putting me on a medicine that helps increase blood flow to my hands/arms.....feet/legs. Praise God I do not have calcinosis on my fingertips!!!! I am grateful for that!!
My appointment with the dermatology department was both encouraging and discouraging! The discouraging part was when the doctor referred to my case of scleroderma as "severe".....and the encouraging part was when he said that there is medicine (Imatinib Mesylate) that has recently been used to treat "skin tightening" that case studies show is beneficial to my disease. He discussed this with Ken and I at length and provided us with literature and case studies to take home to review.
At the end of my appointment the two attending doctors asked if the resident interns could come into the examining room and look at my case of scleroderma. I said "sure","anything to educate people about this strange disease". Then after they came in and out of the room....one of the doctors asked to take pictures of my hands/arms for research and "before" and "after"pics.
I politely asked if I was going to be on the front of a magazine....and he chuckled and started snapping the shots!!!
I am cautiously optimistic....and will make several calls today to my sclero doctor, my rheumatologist in Big Rapids, and my pharmacist. From there, Ken and I will look over all of the data/etc. and prayerfully make a decision. One of the hurdles could be whether our insurance will cover this new medicine or not. It is very expensive....so hopefully the doctors can intervene for us on this and stress the importance of it's effectiveness for treatment.
Once again......thank you!!! I always tell people that even though my body gives me fits....I am strong in my head and heart!! Actually.......that makes me a little "head strong". LOL
Anyway.....we are confident and trusting God to lead the way....to open doors and close doors as He determines.....and to continue to serve Him with a cheerful heart!
Appeal, For Love’s Sake
5 years ago
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3 comments:
Dear Judy,
I know you must feel somewhat down after your appointment, but God is so good to give us comfort in our trials of this life!! Psalm55:22 Cast your cares on the Lord and He will sustain You; He will never let the righteous fall. Psalm 56:3,4 When I am afraid, I will trust in You. In God, whose word I praise, in God I trust; I will not be afraid. What can mortal man do to me?
Psalm 57:1-2 Have mercy on me, O God, have mercy on me, for in You my soul takes refuge. I will take refuge in the shadow of Your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills His purpose for me. verse 7 My heart is steadfast, O God, my heart is steadfast; I will sing and make music. 8 Awake, my soul!Awake, harp and lyre! I will awaken the dawn. Ps.59:16-17 But I will sing of Your strength, in the morning I will sing of your love; for You are my fortress, my refuge in times of trouble. O my Strength, I sing Praise to you; You, O God, are my fortress, my loving God. We can only wrap our lives up in our Heavenly Father, and Trust Him to help us get through these difficult days!! Our prayers are with you and your families!! Love, Nita & Jim
We will continue to pray for you and your family. I know your positive attitude makes all the difference, stay determined!
Tired of your blog NEVER! It's one of the highlights of our day. We both understand the ups and downs and emotions on both sides for you and Ken and want you to know that your are never alone here on this earth or in heaven. GOD is with you both and so are your many friends! We will be praying for the right decision for you on this new turn. Also, for the insurance.
Judy, Don and I have been so blessed for physical relief to his Trigeminal Neuralgia but financial relief this summer for him to be able to work and for the insurance to cover his illness. It really dawned on me during devotion that in part His grace may have been to Don's acceptance of his illness as a gift of God and in part for Don's continuous praise of God as being good even in the worst of times.
In 3 John 1:2 it reads - "Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers."
When Don was at his sickest, we prospered the most in our souls. I truly believe that God allows these things into our lives because, we as Paul, perhaps are the chosen ones to share His truths with all those around us. You and Don are perfect examples of ministers to the faith. And I know that Ken must feel so proud of you for your being so truthful with your feelings and praising God during these times and also sharing the struggles with others in all honesty. I know it brings you closer together with your husband, your family and those who love and know you.
Hang in there Judy, God will see you through.
The only other thing I feel is that your missing your true calling and that is to do some writing along the way to share your testimony. Sure hope you're keeping copies of your blog writings as a journal. Your messages are truly uplifting and transparent in honesty. You are such a blessing to us!
We love you and will continue to pray for you without ceasing.
Love Brenda and Don Wilson
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