Wednesday, May 21, 2008

IVIG day and ALS

Today was treatment day! Glad to get it over with, but I'm not looking forward to the next few days. My hands and feet are swollen and my head is pounding. Thankfully, I've only gotten sick once today! I can't complain and once again I'm thankful for IVIG.

Please pray for my friend who was recently diagnosed with ALS. He is a godly man with a beautiful family and my heart breaks for them. Thanks for your prayers on his behalf.

Be encouraged today. Even in the midst of illness and heartbreak, God is there. Hope is found.

Blessings,
Kristen

13 comments:

Anonymous said...

I am a 59 yr old male.
I was diagnosed with CIDP 14 yr ago 1986. To confirm, I went to Mayo in Minn and had a battery of tests. Since then I have taken Predinsone 80 mg a day whenever I had an episode. In early 2008 I noticed a loss of feeling and coordination in my hands and fingers. In mid Jan I had difficulty walking and was getting weaker with trembling in my hands.
I am taking prednisone, Gabapentine, and Cellcept. I started IVIG treatments in April and redid it in May. So far little improvement. I will be taking two more IVIG treatments in June and July. Three days each ffor 4-6 hr a day.
I have severe tingling and chills in my body. I walk like I have flippers on and have difficulty typing. I am weak most of the time and my balance is very bad. I lean frequently and fall down ocaisonally. I have been off work since Jan.

Thank you for sharing. I hope we and others with this morbid neurological condition can find relief, a cure and return to a normal life.

THANK YOU FOR SHARING YOUR EXPERIENCES

Kristen said...

Dear Anonymous,
Thanks for stopping by. I've been in your shoes with the falling and walking like you're wearing flippers. It feels ridiculous, but just hang in there and know that you're not alone. Please let me know how your next IVIG treatment goes. We're all in this together! Thanks for your comment and hope to hear from you again soon.
Blessings,
Kristen

Joyfulsister said...

((( Hugz Kristen))) You know I lift you in prayer and I am so proud of your daily effort that you take to encourage others despite your own health issues. I know that you reach and the touch the hearts of those who come here to visit, I know you touch mine.. Hugz Lorie

Kristen said...

Thanks Lorie! You made my day!
Blessings,
Kristen

Storm said...

I may not post much here at your blog, but you are often on my mind and in my prayers.

Storm said...

Tag... you're it. Come play with me. Read my post at http://allthingscherished.blogspot.com/2008/05/tagged-3.html.

Kristen said...

Hi Storm!

Thanks for your sweet comment. You're so thoughtful! Have a great week!
Blessings,
Kristen

DA Wagners said...

I'm going to specifically pray for your headache! I know how much my faith is rocked when my health is weakened! I'm praying for a miracle with the ALS.

Anonymous said...

Hi there,

For almost 14 months I have been sick, and doctors don't know exactly what is wrong with me. I have a feeling that I have CIDP, but waiting for a concrete diagnosis any direction is extremely frustrating. The Lord has given me so much patience, but I still feel like I'm struggling with having peace about the unknown, especially when the medical care I've had up until recently has been painfully inadequate. How do I know when the symptoms are getting bad enough that it becomes more of an emergency than something I can wait on? Lately I've been having burning pain in my arms every day, and it almost feels like some invisible force is pressing against my hands and making it more difficult to move them. Half the time when I'm walking, I can't keep a normal gait because of weakness in my legs. Also, I've begun having episodes where I will lose control over motor skills -- for example, I need a small movement of my index finger and it completely extends or starts shaking. Thank you so much.

Brittany

Kristen said...

Hi Brittany!

So glad you stopped by and let me know what's going on with you.

I know how discouraging it can be to not receive adequate medical care and it can be quite frightening. I'd love it if you would email me, so we can talk more details. kristenreyna@gmail.com

I look forward to hearing from you. In the meantime, hang in there and I'll be praying for you.

Blessings,
Kristen

Bobbie said...

Dear Kristen, I am so selfish and I have to apologize to you. Every time we talk, you ask how I am doing and of course I tell you the truth and all that is going on. I had no idea you suffered with this terrible disease. Keep your head up high! Keep Smiling-I don't think I have ever seen you without one! This makes my neck and back injury and my painful divorce look like nothing. You are one tough cookie. Love, Bobbie D.

Kristen said...

Bobbie,

Please don't apologize! I'm honored you share your heart with me and wouldn't want you to stop letting me know what's really going on in your life. You're a survivor and I'm glad we're on this journey together!

Love you!
Kristen

Anonymous said...

This is a beautiful story may God bless you all. I got cidp and there was no insurance so I contacted www.cidpusa.org they referred me to Kabafusion.com. I was snet to a doctor and got IVIg .
God loves you all and God will help you connect with people who can help you