First 1.5 months: Most Unusual!

February 20, 2006
Dear Ones,
Greetings from the newest Knaebel household! This first month of marriage has certainly been the most eventful we could have imagined: overheating in a hot tub on the honeymoon, driving to a second wedding reception in MD, unpacking our new apartment in a week and a half, ER admittance followed by two weeks of hospitalization and tests, and now a week home with rehab already in progress! When did we have time to focus on our new marriage? With all the stresses and changes, it has been a pressure cooker of getting to know each other in one month better than many couples ever do in years. Through all the changes, He changeless still remains. We have been stretched to trust our Savior as He leads the path ahead: from suffering to glory.

I never imagined I’d get scared going to the hospital. All my life I have been perfectly healthy. But when I was diagnosed with Limb-Girdle Muscular Dystrophy in August and it began to speed up in its progression, I felt totally helpless and frightened. Watching your body fall apart and being able to do nothing about it is the moment when your faith is truly tested: do I really believe when it looks like things won’t end up painless and in a way I can know what to expect? I wrestled to trust God with the unknowns that lie ahead.

By the time we realized how quickly things were progressing, we couldn’t get a doctor’s appointment soon enough with a specialist qualified enough to be able to treat me. So we took the unanimous advice of three different family practice consultations: push the envelope by admitting yourself to the ER and make them see you. At this point, I could hardly walk, had been tripping and falling around the apartment, and couldn’t even get up out of a lift chair on my own. After 11 long hours and many student medical evaluations, they finally admitted us. For the next two weeks, I was too weak physically to sit up in bed, raise my arms or legs off the bed, or roll over. I was completely at the mercy of my caretakers. My dear wife stayed by my side the whole time, but for three nights that I forced her home to get better rest. Her faithful support mirrored to me the faithfulness of my Savior’s presence during this often dark hospital stay. I went in and out of depression, though I never knew it at the time. It was incredibly humbling to sit in and smell your own stench day in and day out. The tests were slow and time consuming.

The Electromyogram (EMG) and Nerve Conduction Studies were smooth and painless. Dr. Brown could see how the guy at Hershey had come to his conclusions about my characteristically “chiseled” muscles. But he disagreed with their conclusion. Because my nerves were so responsive, he almost immediately ruled out such diseases as ALS (Lou Gehrig’s) or other nerve related conditions which were on our minds because of the speed of progression and my half a dozen falls around the apartment over the last few weeks prior to the hospital. Rebecca and I said a prayer of thanksgiving before rejoining the rest of the family in the waiting room.

The Lord’s provisions continued to be evident every step we took. After trying our best to see the main Muscular Dystrophy (MD) doctor for days, they gave us an appointment with one of his colleagues, who Providentially was not only one of the top doctors in Philly for the last two years, but also who was the specialist in the area for the disease they now think I have. Go figure. And the phone calls, prayers, cards, and love we have been enfolded with continue to melt us in thanksgiving to God. We even had four crazy college pals drive all night to see us from Chicago over last weekend just to support us in this trial. God has truly been good to us.

As you have probably guessed, due to the medical hospitalization from Jan 30-Feb. 10 and the months of rehab ahead, (including having to learn how to walk again because of having just found out that over the last 9 months, my autoimmune system was attacking my muscles causing them to waste away) I am not going to be able to attend classes this semester. I'm trying to study Greek on my own and take one independent study if possible. Rebecca continues to be my full time caretaker while finishing a correspondence course, wedding thank yous, and the new responsibilities of being a wife so she is unable to work. We have been able to put back some money left over from wedding gifts for the next couple month’s rent and food bills. Our parents are going to continue supporting us as they are able. We are trusting the Lord to provide for our daily needs.

Right now I'm on oral steroids for 6 months to rebuild muscle. They also gave me an IV of Immuno Globulins for 5 days while I was in the hospital, a pooled collection of all known antibodies from 20,000 blood donors which are chemically liquefied (a $25,000 treatment) and flooded into my blood stream to speed up recovery time of my defective immune system. The tentative diagnosis is Dermatomyositis, an autoimmune disease that attacks the body's muscles as if they were an infection. It causes lots of inflammation and a slight purple/blue rash on the knuckles, knees, elbows, and cheeks which was the tip-off to the doctors of my condition. The good news is that it seems to be treatable, though they won't know for sure how my body is responding to treatment for at least 3-6 months. Hopefully at my follow-up appointment on March 13 they'll be able to definitely diagnose me from the Muscle Biopsy results that will be back by then. For now, long recovery-- possibly upwards of a year-- but they hope I'll be fully independent in daily tasks by July 4! Praise the Lord.

As you can imagine, Rebecca and I are hesitant to cling to what the doctors have told us. We don’t know anything for sure. This we do know: “God is our refuge and our strength, a very present help in trouble. Therefore, we will not fear” (Psalm 46:1-2a).
Hiding on to Christ our Rock in the midst of sinking sand,
Christopher and Rebecca Knaebel
P.S. For more wedding photos, visit our website: http://flickr.com/photos/chris_rebecca_knaebel/