Switching Gears: Medical Update

Wow. It is hard to believe it has been almost 2 weeks since my last update. I want to thank each of you for your prayers and the encouraging messages during the difficult process of withdrawing off of the pain medicines for my head injury. I owe great gratitude to Steve and my mom for living in the trenches with me during the withdrawals and at times encouraging me minute to minute to hold out.

I am pleased to announce I have taken the opportunity to discontinue about 14 regular medications that doctors had slowly added to my regimen over the last few years. While all of those do treat issues at hand, discontinuing them is allowing us to see my "baseline" health status. As we try to make future decisions for my care, we made this decision in an attempt to allow the many new specialists I began seeing this week, and additional others in the weeks to come, to be focused on the issues and not distracted by such a long medication list. After all, almost any symptom can be attributed to a side effect of a medication. We pray our decision will not further jeopardize my health, but rather aid in finding the underlying cause of the autonomic neuropathy that is affecting so many of my organ systems. I trust the Lord to sustain me without the medications during this time. I feel the power of the prayers being lifted as I have been able to "tolerate" my increasing headache that was being managed by the medications denied by insurance. It is not easy but I find great encouragement mentally in being able to persevere knowing it may bring greater odds of finding the elusive diagnosis by making the clinical picture more clear.

The last couple of months have been consumed with issues related to my head injury and subsequent chronic headaches, the insurance denial of my much relied upon medications, and the ensuing withdrawal process from the meds. We will be making some decisions, including finding a headache specialist, in the coming days that we hope will bring non- narcotic relief for the pain. I ask your prayers as I make a decision on which physician to pursue. Because of all of this, we put on hold dealing with the separate issues related to my autonomic neuropathy and its multi-system influence. We finally feel we can devote time to finding the underlying problem(s) that are causing the multi-organ system problems.

As many of you know, the autonomic neuropathy became evident in 2007 and we subsequently saw my neurosurgery team from NY. Many of the symptoms were similar, but not identical, to issues I struggled with when I was diagnosed with anterior brainstem compression resulting in brain and cervical surgeries in 2000. In 2007, the team felt like I was suffering from posterior brainstem compression, a rare disorder of the connective tissue, and a tethered spinal cord. The team proposed 2 very radical brain and spinal surgeries. The surgeries have permanent consequences with no guarantee that the consequences won't be worse than the current symptoms -- a trade-off so to speak. We sought a second-opinion that was in disagreement with this diagnosis and treatment plan; leaving us

without a clear path to follow. In our prayers for wisdom and discernment, we have not received peace about pursuing the radical surgeries and agreement about the compression and tethered spinal cord. It does seem that I clinically meet the criteria for the connective tissue disorder and that could have relation to some of my current problems.

We have chosen at this time to assemble a team of doctors specializing in each organ system with dysfunction to see if a different cause for the autonomic neuropathy presents itself. It is a daunting task to find this number of specialists and all of them be progressive, skilled in finding difficult causes, work well together, and not be lost or overwhelmed by my previous health history. This is where we need your prayers. I have a great primary care physician coordinating things and a wonderful gastroenterologist, pulmonologist, and endocrinologist already on board. I have an upcoming appointment with a neuromuscular specialist in Seattle. This week I have seen 2 new specialists: an urologist for kidney issues and a cardiologist. Both were answers to prayer and I think a good addition to the team. I do have quite a few tests to have run in the next couple of weeks, some of them very stressful so I would really appreciate your prayers for peace for me and wisdom for the technicians and physicians as they administer the tests and interpret the results. The urologist suspects a rare kidney disease (which incidentally is often found in people who have the connective tissue disorder I mentioned above) and the cardiologist felt my heart issues were "significant" and started me on medication ASAP to address the irregular rhythms until we can get the tests done to give us more information. These tests have the potential to tell us a lot about whether the issues are in the organ systems or originating from compression in

the brainstem. This differential is obviously significant in determining treatment. We still need prayer in connecting with a local neurologist, neurosurgeon, ophthalmologist, and possibly geneticist. (along with the head injury/headache specialist) Thank you for your prayers as we navigate this complicated process. Below are the dates for my upcoming tests/appointments:

Tuesday, July 21: Pain Management Appt. Gastroenterologist Appt. Cardiac Test

Wednesday, July 22: Cardiac Test Friday, July 24: Cardiac Test (5 hours!) Thursday, August 6: Cardiology Appt. Thursday, August 13: Kidney tests

Friday, August 14: Neuromuscular Appt.

Thank you for your specific prayers on these days and for continuing to check in on us. Through the prayers of many, God has covered Steve and me with a "garment of grace" and we have found joy and peace on this journey.

"My soul, wait silently for God alone,

For my expectation is from Him.

He only is my rock and my salvation;

He is my defense; I shall not be moved.

In God is my salvation and my glory;

The rock of my strength, And my refuge is in God.

Trust in Him at all times, you people;

Pour out your heart before Him; God is a refuge for us." (Psalm 62:5-8)

"Always be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." (1 Thessalonians 5:16-18)

Thanking God for each of you (and your perseverance in reading my mini-epistle) and praying that you seek His face this day!

In Faith Alone, Lee (and Steve)

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Messages

Kelly Anderson

July 17, 2009, 5:20 PM

Thank you for the update Lee. I look forward to seeing the Lord meet you in these appts. You are both in our prayers and we appreciate your friendship. Your Friend, Kelly Anderson

Thame Fuller

July 17, 2009, 5:21 PM

Thank you for sharing. What a journey and what an example of perseverance and faith! I know it has been and continues to be hard. I am so glad that God never leaves or forsakes us, and I am so glad the He is giving you the strength and encouragement

you need to press on. We are praying for you! Yours with Christ's love - Thame

Sandy Moye

July 17, 2009, 5:42 PM

Thanks for the update. Will continue to pray!

Nola von Neudegg

July 17, 2009, 8:12 PM

Still standing with you... Nola

carol sparks

July 17, 2009, 9:12 PM

I have printed your requests and will pray our Lord Jesus Christ will answer in His perfect will and plan for you and Steve. May His peace be your constant companion. In His love, Carol Sparks

Jason Benjamin

July 18, 2009, 2:45 AM

You and Steve are always in my prayers!

Don Disney

July 18, 2009, 1:10 PM

Thank you for including me in your EMs. I am encouraged with your progress and pray for your sure continued success. Distance and time may separate us but I have not forgotten you. I have much love and admiration for you both. I saw Mark and Gary recently. Your trip sounds exciting. I still work at WMBC and am trying to keep the farm going. I turn 64 in about a week. Doing well............Loving you!

Steve Braden

July 18, 2009, 6:51 PM

I have marked my calendar for these dates. Prayer has already begun. As I read your update, my favorite verse continues to ring in my ear. Ephesians 4:13 We love you both. Aunt Helen and Uncle Steve