Wednesday, March 28, 2012

How God worked things for me.

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Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
I believe my purpose in all the things that have happened in my life were to bring glory to God. From Jonathan being born early and being so little (2lb 12oz) to Scott's battle with cancer, taking care of my parents (my dad was legally blind and my mom had Alzheimer's) to this most recent occurrence of CIDP. But these are just the tough things, there are so many more good things that have happened in my life. My relationship with my parents was wonderful; with my siblings (I was the baby) have grown stronger as we have gotten older; both marriages I count as blessings; and being a mother is the most interesting! But, my relationship with my Savior has grown leaps and bounds since I turned about 40 and that is something I will cherish forever.

My choice is to acknowledge Him in all that happens to me, and offer Him praise through the good and bad. This, to me, is what is called faith. We don't know why things happen the way they do, and we may never know and I don't have a problem with that. 

When I was diagnosed with CIDP the doctor that helped me regain my abilities to function best told me that I would probably be on IVIg (Inter venous Immunoglobulin-certain blood products from about 1000 people) and steroids for a time; then wean off the steroids and stick with the IVIg and eventually lengthen the time between IVIg infusions. After a year, I was still getting the IVIg every 3 weeks and still on steroids. I tried to go off the steroids at one point but that set me back almost to the point of how bad I was at the very beginning. Made me wonder if the IVIg was doing much at all. But, you can tell the difference when time goes by that it is time for it again. I just don't seem to be able to do one without the other.

During the first few months after I was diagnosed, Eddie did a lot of research on the internet about CIDP and found a web site called GBS/CIDP Foundation International. I got on it and went to the forum to talk to others that had this same disease. The Lord lead me to a gal named Alice who had a stem cell transplant (SCT). Now, some of you know my first husband had a bone marrow transplant that didn't turn out too well. I watched him suffer so long and hard through that battle, but the thing I remember most is saying to myself "If anything ever happens to me that I need this kind of treatment, I will NEVER do it!". From the time I read about Alice and read her account of the stem cell transplant (you can see it @ God opened my eyes and heart to this procedure. I sat on this information for a while and chewed on it. Kept it in the back of my mind as an "option for the future". I was so frustrated in feeling better, then worse; fatigued then a bit of energy; dizzy or not; shaky, weak, tingles, more weak. I thought "I do not want to do this the rest of my life!" The more I kept thinking about the SCT and reading about it, the more I realized this is something I was truly interested in. I spoke to Eddie about it occasionally and had him read a thing or two and pretty soon he was finding out more information on it than I was! We were praying about it and it was time to put those thoughts into action. I got the paperwork from Northwestern University Hospital and got my paperwork together to send it back to them. I heard back shortly that there was nothing that would hold me back from the evaluation process and we booked a date for me to go to Chicago!

There is someone near to my heart that has made a huge difference for us in that he (and his wife) has helped us financially by paying my plane fare to and from Chicago among some other gifts (they know who they are, thank you!) 

A week before I was to go, I got a wonderful blessing of getting to meet Alice and her partner Sophie! We went to lunch together and I got to pick their brains. I was so excited I could hardly eat (if you know me, you know that is highly unusual!), Alice, of course, having gone through the SCT and Sophie had so much to add as her caregiver! After I was accepted in the program, we got together again for dinner and chatted about it all some more...(I finished my meal this time!)  

While in Chicago for the evaluation, I stayed with my brother John and his lovely wife Janet. John carted me back and forth from their home over an hour away for the two days of my appointments and patiently sat in the waiting rooms for me to meet doctors and test throughout the days. Then, we would go out to eat or he cooked delicious food for me (he used to be a chef and he still cooks great! Filet Mignon for one meal-I know, I'm a lucky girl!). His two kids and their kids live in the area, so we got some well-needed family time in as I stayed for some extra days in order to enjoy them!

Well, take a break folks....I'll be back for more.

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