what a week

what a week, wow, it is amazing what a little fear will do when it creeps in!!! over the weekend J started to do really badly, like it was happening so fast, by Monday morning he wasn't sure how he was going to get up out of bed. It was scary. I felt completely panicked. In no way was I feeling prepared to handle all this again so soon. You can imagine the roller coaster ride of thoughts and there are many bunny trails I didn't want to go down. The look on his face I knew he didn't want to tell me how bad it was getting but it was getting hard to ignore. So panic set in and fear quickly followed. I started to feel guilty about cutting my hours back at work and yet knew that I had to for our families sake.
What a brutal couple of days until I finally talked to his Neurologist on Tues and when I told her that J recently burned himself...by putting gas on a fire and leaving the empty gas can beside him which exploded giving him 1st & 2nd degree burns on his face!!!.... she said what most likely has happened is his immune system kicked in to protect him from possible infection from the burns and went on a seeking mission and found the CIDP again and triggered it. It actually made me feel so much better to know that this is not the CIDP coming back all on it's own it was triggered from the burn and shows that his immune system is still really ready to attack itself. She said we are still learning how to treat J and now we know we have to be extremely aggressive. (Auto-immune diseases are so individual, there is no 1 treatment that works for all patients) This means he is going to the hospital this coming Mon thru Wed for daily IVIG treatments and she is putting him back on prednezone (sp? strong steroids). They really affect his emotions so they will give him other meds to combat what the steroids do but it is necessary for him to be on them.

I cried all day on Monday and was glad I could blame it on allergies at work!! I kept thinking he is only 34 and didn't want to think about having to move back to the Coast to have the support of our families. I cried thinking about moving because I really love it here..... who would have known? well I can think of a couple of people who knew and of course God knew. So I am fighting to not let panic stay and fear room to control my emotions. I am having to trust in God that He leads us and guides us and knows the beginning to the end. Thanks for your prayers, we sure feel them!

9 comments:

Nadine said...

I will keep him in prayer. I pray that the Lord would heal his body and give you peace. I understand how you feel. I pray for a quick recovery.

Dawn said...

Wow. I'm so far behind in reading! I am so sorry you've gone through all this "stuff" at work, and now again at home. But you're right - being grown up is not all it's cracked up to be! If only we knew this when we were kids, huh??

Blessings on you and your beautiful family.

Cheri said...

My mom is fighting a rare neurological disorder, one that landed her in the critical care unit. I will post about it soon. This morning I was thinking about what the doctors have said to her and what we are believeing for and the song Who's Report Will You Believe came to my mind. Here are the words. We'll be praying for you. If you don't know the tune, I'm sure Shash will sing it to you on the phone sometime.

Who's report will you believe?
We shall believe the report of the Lord.
Who's report will you believe?
We shall believe the report of the Lord.
His report says I am healed,
His report says I am filled,
His report says I am free,
His report says Victory!
Who's report will you believe?
We shall believe the report of the Lord.

Jon said...

WOW - Just got back from a week-long conference (leader's school focused on inner healing and the Father's love). In the last class we were taught a bunch about praying for the sick and then we got to practice. I got to pray for Jason Baerg, who got healed from 12 years of constant back pain. I'm soooo jacked up!!!! I'm soooo calling J tomorrow....

Glo said...

Our love and prayers are with you and your wonderful family.

Looney Mom said...

Oh, I'm so sorry about J getting burned like that! How awful! I pray that you find that peace that God gives and that J. will be healed completely!

The Lang 6 said...

Hey!! say Hi to J for me. I had lunch with Jon C the other day and heard about whats going on. Of course your family is in our prayers...
-Dan

The Lang 6 said...

oh, I added you to my blogger homepage, is that okay? I always hafta go to your blog thru Pattis, its just easier. If you don't want me to have it on my blog, just let me know at thelang6@shaw.ca
-Dan

Dawn said...

Just checking in to see how you're doing.