One Week Down...

My TJ Maxx Partners in Crime - Sisters Connie (bottom) & Kristie (top left)

Well, I’ve completed my first week of Dr. Jakacki’s plan of attack on the Lyme disease that has been sucking the life out of me for the past 15 years.  On Monday - Wednesday mornings I visit Dupont Outpatient Clinic for my IV antibiotic cocktail, then on Monday - Wednesday nights I go to Dr. Jakacki’s office for another dose of Rocephin.  I have been surprised at how long it takes to get this done.  It’s around 4 hours at the clinic.  Then when I have to go to Dr. Jakacki’s office at night, it’s at least another hour.  I guess the war we are waging takes time to win.

I’ve had a couple of new issues arise as a result of my treatment.  On Tuesday I had an appointment with Dr. Jakacki.  I was having some pain on my left side, just below my ribs.  He pushed around where I said it hurt (which made it hurt all the more) & found that my spleen was enlarged.  This concerned him because my liver enzymes are elevated, which is evidence that my liver is struggling to filter my blood.  Remember, I have non-alcoholic steatohepatitis (NASH).  With my unhealthy liver struggling so much, things got backed up to the spleen, which is a key organ in the lymphatic system.  It gets little attention, nevertheless it is a vital organ in fighting infection & filtering out old red blood cells.  Since my spleen was enlarged, he ordered an ultrasound which I had done on Friday afternoon.  Yes, another trip to the hospital.

Then on Friday, I had another appointment with Dr. Jakacki due to a very sore spot on the roof of my mouth, & my tongue felt swollen.  He looked in my mouth, said “Eww!” & told me that I had Thrush.  If you’re a mom, you are most likely familiar with Thrush.  It is a fungal infection in the mouth.  With me, it was beginning to spread into my throat.  This caused Dr. Jakacki to have to tweak his strategy for fighting my Lyme.  He decided to start me on an antifungal called Diflucan, as well as a disgusting liquid I’m supposed to swish in my mouth & then swallow.  From now until God knows when, I am supposed to take Diflucan on Thursday through Saturday.  I get Sunday off of all antibiotics & antifungals.  Yay!  A day of rest!

By the time of my appointment, Dr. Jakacki had received the radiology report from my ultrasound earlier that day.  My spleen had gone back to it’s usual size!  Praise God!  He surmised that it was enlarged because of the strain my liver was under during the days of my antibiotic therapy.  When I wasn’t receiving the IV’s on Thursday & Friday, my liver was able to catch up, which got things flowing normally between the two organs.  We both were relieved that the swelling had gone down because that’s just not a problem I need right now!

During my first week of chemo I got a glimpse of what it’s going to be like for the next couple of YEARS.  That’s how long Dr. Jakacki thinks it will take for me to get the upper hand on Lyme.  Monday I felt blah.  Tuesday I was more drained & weak.  Wednesday I was thoroughly exhausted.  Thursday I slept through most of the day.  Friday I wanted to sleep through the day but couldn’t because of my ultrasound.  Saturday I was able to do a little around the house - hanging up clothes, changing the bed, picking up in the living room & basement - nothing too strenuous, but to me it was tiring.  By today, Sunday, I woke up with a little more energy & less nausea.  I was able to go to church & even lunch with Jessica & Jeff.  By this time (it’s round 9:00 pm as I write this), I’m super tired & looking forward to crawling into bed.

Today at church Ron (Williams) talked about Jehovah Shalom, which means “God is our peace”.  Pray that I will allow God to consume my entire being with His peace.  I want to do it like Peter when Jesus told him that if he didn’t let Him wash his feet, he could have no part of Him - “Lord, then wash not only my feet, but also my hands and my head.”  I want to be saturated in God my peace to such a degree that people who I encounter through my long journey ahead will notice a Spirit of peace in me.  I want to walk through every day in confidence that “He who began a good work in me will carry it on to completion until the day of Christ Jesus.”  I believe God has a purpose for allowing me to bear this cross for His glory.  Please pray that I will prove myself a worthy servant who is faithful & willing to walk through anything that God takes me through.  And please, please pray for Bob & my kids as we all experience this together.  Pray that they, too, will experience the peace that only God can give.  Thank you for your faithful prayers on our behalf.  I am so unworthy of your consideration! 

I would be remiss if I ended this posting without expressing my deepest gratitude to God for the thousands of men & women in the United States Armed Forces who have made the ultimate sacrifice in order to secure the freedom of our great country.  Not only am I grateful to those who have fallen in battle, but I am sincerely grateful to the families of those who perished, because allowing their loved one to serve under our Commander in Chief had to be a tremendous sacrifice for them as well.  The bravery & courage of military families & the troop who represents them is beyond my comprehension.  Thank you from the bottom of my red, white & blue heart.

God's Timing is Perfect

Perfection: Atomic Clock, Paul McDonald's Teeth & Submariner Rolex

It’s time for another update. I think I waited too long, because so much has happened since my last update. Where to begin?

When last I wrote, I had recently seen a neurologist about the lesions on my brain & my ability to continue in my physician’s practice was up in the air.  The weekend of May 1st, Dr. Jakacki attended some conference somewhere. The only way I know that he went to a conference over that weekend is because late that Sunday evening I got a call from him. He was all excited about the things they covered at the conference, especially because it gave him some insights into my crazy health. He told me to call his office 1st thing in the morning to get an appointment so that he could go over what he learned. Being the obedient, submissive person I am (*loud throat-clearing can be heard across the land*), I called & got an appointment on the books.

Bob went with me to my appointment because he was eager to hear whatever Pete was so excited about. It turns out that Pete learned a LOT about Lyme Disease from that conference. He got out one of the booklets that were handed out to all in attendance & page after page showed me the signs & symptoms of Lyme Disease. After we had looked through the whole book, Bob & I looked at each other in wonder. I told Pete that it was as if he took my chart with him & gave them to the speaker, who used my chart as notes for his complete talk! Almost every malady I have can be connected to Lyme. It’s like Lyme is the grenade that blew up my health, & all of my other illnesses are the shrapnel that spread out & did damage throughout my body. Chronic Fatigue Syndrome, arthritis, muscular abnormalities, migraines, diabetes, insomnia, low magnesium, even Panhypopituitarism! Lyme can also cause multiple sclerosis! Every diagnosis I have from the past 20 years or so can be connected to Lyme Disease! Some of you may wonder how a person gets Lyme Disease. Well, it really ticked me off to learn that Lyme is spread through deer ticks. You also may wonder how I would have been exposed to deer ticks. I must tell you that my father was a farm boy at heart, & as a child, I frequently went with him to my grandpa’s farm. I enjoy being outside. Before I got sick I liked to walk through the woods & grassy fields. After Colson was born (& before Josiah), Bob & I took a group of students to Beattyville, Kentucky to minister to the many malnourished, needy children of Appalachia. We were in the hills for sure! The mission that we stayed at was directly on the edge of the Daniel Boone National Forest. I think you would be correct to say that we were “in the Boone-ies”!

Because Dr. Jakacki was so psyched about finding this connection with my health, he wanted me to begin an IV antibiotic therapy, which is the only proven way to lessen the hold of Lyme. It never goes away, but you can get it somewhat under control. There are very few reliable diagnostic tests that can be used with Lyme. But Lyme is primarily diagnosed through symptoms. However, I will be doing a lab that Pete thinks has a good reputation for being accurate, just to see if it can be confirmed. In the mean time, I have begun a new schedule. On Monday, Tuesday & Wednesdays I am to go to the Outpatient Clinic @ Dupont Hospital, where I will be given IV Doxycycline, Rocephin, Magnesium & Zofran, as well as a bag of lactated ringers. The drugs can’t be given together, so this process lasts about 3 hours. Then in the evenings of those days, I have to drive to Dr. Jakacki’s office to get a Rocephin shot (actually two, because of the large dose I am getting). At home I also take Doxycycline & Flagyl orally. Gratefully I will get 4 days of rest & recovery before starting the cycle all over again the following Monday. In speaking with the Outpatient nurses who I am beginning to know & love, I was told that this regimen is chemotherapy. All IV therapies that use powerful drugs to kill an unwanted illness are technically “chemo” therapies (chemo stands for chemical). I was also told that like cancer chemo, my meds will make me feel terrible & very sick. I will be greatly weakened & have heard over & over again - sleep is the best way to heal. I’m not usually a napper, but I think that will change. Pete hopes that giving me 4 days in between drug therapy will allow me to recover my strength before having my body trounced by antibiotics again. I for one hope he is correct!

Since Pete is the topic of discussion, I have to address my fears about losing him as my physician. Pete told me that BMA, now being joined with Lutheran Medical Group (LMG), would never allow a patient to remain within their group after filling bankruptcy. Even so, he told me that he would write a letter, & told me to write one as well. After I gave Pete my letter, I didn’t ask any questions about the situation because I didn’t want to hear bad news. Yeah, such amazing faith! About a week & a half later, I received a letter from BMA. I prayed before I opened it, & then slowly tore the envelope & took the letter out. I carefully unfolded the letter & began reading: “Dr. Jakacki has shared with me that he wishes to retain your family as patients in spite of your bankruptcy. Since joining a larger corporation, Dr. Jakacki will not in the future have the latitude to retain you or other families in your situation.”

Here’s the kicker! “However, after your balance is discharged & you have a ‘clean slate’ with us for dates of service prior to your bankruptcy filing, you absolutely must make any copayments or otherwise pay for services not covered by any insurance. We are all looking forward to a continued relationship as Dr. Jakacki continues to care for your medical needs.”

The magnitude of this miracle is to me like the parting of the Red Sea. We have collectors following in hot pursuit, wanting to enslave us to their high interest rates & penalties. We feel trapped because it seems we have lost the one thing that we desperately need. Suddenly, BMA billing stands in front of the Red Sea & spreads their arms above their heads. In one hand is the letter from Pete. In the other hand, the letter from us. God has shown favor to us & allows us to walk through the Red Sea of our life, safely to the other side. The key to this will be to remember our deliverance & to purpose to never get in this situation again.

God’s timing is more perfect than Paul McDonald’s teeth! If you haven’t been watching American Idol, scroll to the top of this update & his picture is there. God’s timing is more perfect than a Rolex. His timing is more perfect than the atomic clock. His timing is ALWAYS PERFECT! Why don’t I remember that more often? So God heard all of the prayers which were offered up regarding this situation, & when God’s people pray, He hears & acts. Thank you so much for praying on our behalf!

There are a few things that we need God’s direction in, & we would like to ask you to pray with us about these. Please pray that during this stressful, unpredictable time, Bob & I would grow stronger & closer to each other than ever before. Even with 25 years under out belts, we are still fallible people with sin natures that find the worst times to rear their ugly heads.

Please pray for our children. Jess is married & loves it. We really are thankful for the man of God her husband Jeff is striving to become. Rachel has not yet decided what she wants to do with her life. Until that is decided, she is working at a gym & also at a warehouse. Isaac is working with Paragon Landscaping & has already lost a lot of weight in the process. Pray that things will work out so that he can get his transcripts sent from USI to Grace College for classes this fall. Colson is SO CLOSE to graduation! He can’t wait! He is just beginning a job at Phil’s One Stop in Grabill, so stop in & say hi sometime. Josiah is finishing up 7th grade but struggles to stay focused on the boring task of learning. He is experiencing a little twinge of separation anxiety with me. He wants to be with me at all times, or to know where I am, why I am there & how long I will be there. He is afraid that I will die & he won’t be with me to say goodbye. It’s sad that he even thinks of his mom dying!

Please pray for Bob & me. Since Bob is PRN, his hours at work fluctuate based upon the patient census. It’s been low recently & this has greatly affected his pay check. He is very discouraged about this, because he wants to do what every man wants to do - provide for his family. Bob is considering finding a 2nd job to supplement his income. Pray that God would turn him to the direction He wants & that Bob will become at peace with his best efforts. God can & will make up the difference. As for my prayer needs, you could probably guess. Pray that no matter where I am, what I’m doing, who I’m talking to, that I will be a woman of integrity & a beacon of the hope I have within me. Pray for me as I am unable to help clean the house because the chemo is too much for me. I feel guilty about that. And pray that the Lyme protocol that Pete has put in place for me will work as God intends & that my body will cooperate with the medications.

Thank you for your concern, thoughts & prayers. You have an impact on our lives! God bless!