Wednesday, October 30, 2019

...and After

Mayo Clinic and Minnesota are in our rear-view mirror once again. We had a wonderfully scenic and relaxing trip up north to Canada from Duluth along the North Shore Scenic Drive. We enjoyed a lot of time outdoors, even though we had to bundle up, and I got stuck a couple times!




Minnesota was a tad colder than Chicagoland last weekend. I am thankful for the extra days Chad was able to take so that all of his vacation time this year wasn't spent just sitting at Mayo Clinic. It is great to have a little time to unplug, unwind and reconnect to each other (not just the internet); however, I am looking forward to getting home shortly, because there is no place on earth more comfortable. (and I miss my puppy 😭)

I repeated three of the nerve tests over the last two days and returned to the neurologist. The test results are basically the same as our visit 7 months ago, with one being marginally worse. We have decided to take a year off now and see if I stay stable or get worse. I will repeat these same tests again next fall, and compare the two years (one with meds, one without).

If I start getting worse this year we can always restart the infusions. Also, doctors at Mayo have developed a new blood test to check for certain markers in the blood for people with an inflammatory neuropathy (like me). If I have what they are looking for, we might have a different treatment to consider.

Anyways, our visit is over for now. I really appreciate all of the much needed prayers. I have some amazing, faithful friends 💜

I hope I explain things well enough. We know I have a form of CIDP, which is progressive, and will likely get worse with time. It is a rare disease so there isn't a ton of info on it, but my doctor and his father are the leading experts.

So, keep praying, but also know that we are holding steady on the current course, and not expecting earth-shattering news or treatment options that will "cure" me. Please pray for pain control, wisdom, and even healing, if God so wills, but know that my trips to Mayo are not a search for a cure or diagnosis. We are trusting God's good, pleasing, and perfect will in each of these trials, and taking one day at a time.

Thanks for following along on my journey with me!

~Until Next Time
Shari

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