Direct From Mayo

As I’m writing this, I’m sitting in a waiting room hoping to get into a stand-by appointment with a rheumatologist. We’re on track to be done with all of my initial testing and consultations by Friday afternoon, with the exception of the rheumatology consultation. Please pray today that I have a chance to get in today, otherwise we have to return next week.

So far I have been subjected to 30 X-rays, three nerve conduction tests, an EKG, a 15-tube blood draw (my previous record for tubes in one draw was 10), and hours of interviews by doctors. Today involves a consultation with neurology to try to get to the bottom of the spasms I’ve been having in my left arm. The doctor who performed the tests yesterday said that the nerves themselves seem to be undamaged (“that’s the good news”) but at doesn’t explain why the spasms have been happening (“the bad news”). Tomorrow involves a number of CT and MRI scans and consultation with a doctor about my frequent sinus infections.

The short version of this story is that we don’t know yet what has plagued me for the last 13 months. We do know that the internist said, “This will be a challenging case.” That told me that this would not be one of those ten minute miracle cures, but some miracles take longer than ten minutes. I am still confident that answers will come from my visit here, but it may take another visit and more testing to reveal all of those answers. Please continue to pray that God would put me in the hands of the right doctors and give the answers that I have been seeking.

Mayo Day 1

Mayo update #2 – Joel had an EKG this afternoon and his bloodwork starts tomorrow at 7 am. He and his dad are eating dinner now and heading back to the hotel to rest – they’ve had a long day! He feels and sounds terrible but I detect hope in his voice!

Mayo update #1: Joel’s initial visit with the doctor went almost 2 hours long. The doctor said, “this will be a challenging case.” They will begin testing right away and he will be there all week. He might even have to go back next week. Joel said he really liked the doctor and that he is considering a wider range of possibilities than other doctors before. Thank you Lord for this doctor!

Leaving for Mayo Soon

Last week I wrote about the unexpected ways that God has blessed us. I would like to mention just one more thing that has happened recently.

Last week I received a phone call from my Jr. High Sunday School teacher saying he would be in Las Vegas and would like to stop by to chat and pray before I head to Mayo Clinic. He asked if it was alright if he had a friend along; a friend who had never seen the Grand Canyon and was taking the time to come with him so he could play tour guide. I said it would be great to catch up. When my teacher showed up on my door step yesterday, the friend that had accompanied him was also a friend of mine. “Ace” was a translator on the three mission trips I was on in Romania with For God’s Children International. The last time we saw each other was nearly thirteen years ago, but it was easy to recount the tales of the orphanages we visited, the people we worked with and the work that God did through us those many summers ago. “Ace’s” visit was yet another reminder of God’s sense of loving and caring. He sent someone half way around the world, just to stop by and say hello. Wow.

As I make final preparations to go see the good doctors at Mayo, I’m excited to know that within a few days we may know exactly what is affecting my body. I’m also a little scared that they won’t be able to find anything since answers have eluded us for months. Kayla reminded me last week that there are many people in the world that live with undiagnosed disease. I’m hoping that I’m not one of them. I was also reminded that although diagnosing my disease is a big deal to me, it may not be to the doctors, and certainly isn’t to God. While I wonder and worry about names and treatment plans, the doctors at Mayo are the professionals and have far more experience in this than I have. Some days it has been hard to remain positive, but I am confident that since God has provided the means for us to get to Mayo, that he will also provide the right answers to the right doctors while we are there.

Although I live with this confidence, I anticipate the next few days to be very hard, physically. I woke up yesterday with a sore throat that grew worse throughout the day. Now it is a full blown sinus infection. Usually these are not a big deal, but since I’ve been on immune suppressing drugs, they have really taken a toll and cannot be left alone. Everything hurts more and the swelling from the inflammation is amplified. Please pray that this infection does not allow something worse to settle in and that I get over it quickly.

No Worry = Strength

I was listening to a message on the radio on my drive in to work today and I liked what the pastor said about worry. Most of us know Matthew 6:34 that says, “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.” And he combined that with,“Worry does not empty tomorrow of its sorrow, it empties today of its strength”  (Corrie Ten BoomClippings from My Notebook). So I decided today I would stay strong and not worry about _____. (You can fill in your own blank of what you worry about). Or like me, you might have many blanks. 🙂

When I got to my office, there were three envelopes of Jacksons on my desk. I was overwhelmed at the generosity of others, thankful and tearful. Talk about an instant learning lesson! I attached a picture of one of the best cards ever in the history of the entire world from our dear, sweet friends, the Jackson’s. Even their dog, Kierra, participated. Thank you Jackson’s! And thank you to everyone else who gave anonymously. Last week I told a friend the anonymous ones are frustrating for me because I really want to thank people! But he said, “They know. They know.” I think he’s right, but just in case, thank you!

Mini-update on Joel – Everything is coordinated and we are all ready to go! His dad, Jim, flies in Sunday and they will leave super early Monday morning. I would have loved to go with him but Malachi starts Kindergarten that day and we felt it was important for one of us to be here for that. I’m really thankful for Jim coming because Joel’s tremors have become a lot worse lately and it makes it hard for him to drive. Unfortunately he hasn’t been on his bike in awhile so that part is hard for him, but there is the hope of riding it again someday for him.

Hope you all have a great week!

 

 

No MS

Last Wednesday I had an MRI on my brain to check for lesions that would indicate the presence of multiple sclerosis. We just received the official letter from my doctor saying that there is NO MS. We praise God that my sickness is not caused by MS, but we’re still praying and searching for definitive answers.

God’s Blessings

Some time ago my mom told me that she had been praying that God would bless us in unique ways during my sickness. Here is a list of some of the things that God has done for us in the last year. Some of them are “simple” provision, others are more specific and tailored just for us. Here we go.

I have been on disability since the end of January and at every turn when we have needed money, we have received a check in the mail. Sometimes it’s just enough, other times it’s more than enough (which just means we’re going to need it later) but it has always covered our need. One of my favorite money provision stories came when we were celebrating Kayla’s birthday. We were going to a movie and she put a few quarters in the Wheel of Fortune game outside the movie theater. She won $108! Another time we received a chad in the mail from my mom. She had cleaned out her office and found birthday cards with cash in them, combined all the cash and sent it to us. God provides in ways we would never really think of.

Recently my brother started the ‘Jacksons for Joel’ campaign on Facebook. It is a way for people to donate to help us pay for my upcoming visit to the Mayo Clinic in Scottsdale, AZ. It will cost us $3000 just to get in the door, and we anticipate paying a lot more than that before we’re done. My brother didn’t share with me that he was going to start this fundraising campaign, but was moved to do so when a member of his congregation asked what the church- with a capital ‘C’, not just their congregation- could do to help us out. I was extremely humbled and touched when I checked Facebook one morning and saw what Troy had done for us. I have been amazed by how God is moving people to give to us through ‘Jacksons for Joel’, some that are people that we don’t even know.

My personal favorite encouragement came in the form of an autographed cycling jersey. A former colleague of Kayla’s from the video department in the church is now working for a film company in Denver. They were filming a documentary of a new cycling team, and while on location in France, this colleague shared my story with one of the pro cyclists. The cyclist is know as one of the toughest in the pro peloton and has been dishing out the pain (and entertainment) for 16 years. I have loved watching him in the big races around the world, and when he heard my story, he pulled a jersey out of his bag, signed it and instructed that it get to me. It’s hanging in our home office and it’s message and the thoughtfulness of our friend touches me each time I see it. God’s delight in providing encouragement continued when I got to personally thank the pro at the Amgen Tour of California in Los Angeles.

Most importantly, God has put some really awesome people in our lives. These are people that have been with us through the hospital stays, discouraging test results and non-results, the bad days and the good days. We are so thankful to have such great family and friends to support us on journey through this new season of our lives. We look forward to seeing just how God will continue to encourage and provide for us.

Wristbands

Are now available at the two42 cafe and bookstore at Central!