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It’s a Wrap!

This is the final installment of Life Happens – Jesus Answers and “Journey of Transformation.” God is bringing changes to the PWOCI blog so it is time to say goodbye. Change is good when it’s God directed and I trust that He has many blessings in store for us as we Shine in the Light of His Glory.

To begin, I’m including the final paragraph from the July 1, 2010, entry for context:

By September 2002 my health disaster was out of control. Clearly, there was more than lupus ravaging my body. The time had come to take my health care to the next level. I needed answers and I needed them fast. Fortunately, God had an awesome rheumatologist waiting in the wings.

By October 2002 I was wheelchair bound. I needed assistance with eating, bathing, dressing and walking. I was carried up and down stairs. I was bedridden. The excruciating pain, weakness, and burning in my arms prevented me from using them except for balance. The slightest exertion exhausted me. Infected ulcers burrowed to the bone on my elbows. This was a new level of torment.

By the grace of God I landed in the office of Dr. Michael Baker and my search for genuine help was over. I slumped in the rented wheelchair, head adorned with a ball cap covering my unsightly mane, and tears streaking my red, swollen, disfigured face. Both Dr. Baker and my husband carefully lifted me out of the chair and led me toward the examining table. Not only was I nearly paralyzed, I was breathless from exertion, and virtually lifeless.

After a physical examination, lab tests, and a muscle biopsy, Dr. Baker concluded that I had a form of muscular dystrophy called dermatomyositis. This life-threatening autoimmune disease attacks skin, muscle, and connective tissue – basically, the entire body can be affected. Only a small percentage of lupus was present by comparison. The other autoimmune diseases were Sjogren’s Syndrome, Raynaud’s Syndrome, and hypothyroidism. Treatment was prednisone and intravenous immunoglobulin (IVIG) infusions derived from human plasma.

With this new information came the time to update my Exceptional Family Member Program (EFMP) data including the fact that I had only a five-percent chance of survival. Without treatment, or if treatment didn’t work, I would have died. Years later while my dad was dying I learned that I could have received hospice care because my diagnosis and prognosis were so critical. This is something more people should know in case they have gravely ill family members who aren’t necessarily terminal.

Once I was officially diagnosed with a neuromuscular disease I became one of “Jerry’s Kids” and received a custom-fit wheelchair compliments of the Muscular Dystrophy Association. I still have it to this day and intend to keep it as a reminder of the depths to which I plummeted and the brink from which God saved me.

In spring 2003 a knowledgeable army dermatologist gave me a remedy for the infected ulcers on my elbows. One part vinegar to one part water. You heard me right. I was so angry to have suffered for eight months with this torture and all I would have had to do was soak my elbows in vinegar and water! Of course, the remedy was just as excruciating as the ulcers themselves. So I took oxycontin an hour before soaking because the burning pain was too much to bear.

By July 2003 the ulcers were gone but they left permanent, hideous scars. I was able to drive by this time and managed to get myself to PWOC. I had to sit during the entire program and went straight home and back to bed after. In March 2004 I was able to discontinue taking prednisone but continued the infusions.

The promise I received from the Holy Spirit back in 2001 about this trial lasting about five years came to pass. From the time I began getting symptoms in January 2000 to the end of 2004 the ordeal was largely over. Five years. After that the recovery process began.

In January 2005 I began weight training for the first time since 2000 and could lift only 10 pounds on the leg extension machine (quadriceps). I’m still working my way up to 90 pounds which is what I lifted before the disease set in. My quadriceps and biceps were the most severely affected muscles in my body.

By May 2005 I no longer needed oxycontin and phenergan for pain and nausea, and I finished the IVIG infusions after 27 months of treatment. It nearly took a miracle for me to receive these costly infusions but God worked it out. By August 2005 my hair had grown back completely. In 2006 I continued serving at my local PWOC.

In October 2007 my rheumatologist declared me cured of dermatomyositis. I stood in front of the PWOC body and gave an impromptu testimony about my healing, and proceeded to cut up the handicapped plaquard once displayed from the rearview mirror of my car. It was an act of faith.

As I recall 1999 when I walked around our Germany apartment praying for God to transform me by the renewing of my mind (Romans 12:2) I had no idea how He would answer that prayer. I certainly didn’t expect Him to take me down a dark and tangled road. Having endured all this and more, I am convinced we are far better off not knowing the future. Anticipating suffering of this nature would render many of us immobile.

Having persevered and arrived on the other side, I understand why God chose this path for me. It was effective. He used my physical anguish to produce an inward cleansing and strengthening of my heart and soul. As a result, I am free from many old habits, mindsets, and strongholds that kept me from living free in Christ.

There is nothing like a life-threatening illness to get you in a position of dependence, humility, and focus. It creates sober reflection and laser sharp awareness of what really matters in life. The things I thought were important gradually fell away while life itself shone through as the most significant thing of all – that is, eternal life. “Turn your eyes upon Jesus, Look full in His wonderful face, And the things of earth will grow strangely dim, In the light of His glory and grace …”

God taught me many things through my journey of transformation thus far, but rather than sharing some of them in my own words I’ve chosen to let the Word of God speak:

Before I was afflicted I went astray, but now I obey your word (Psalm 119:67).

Blows and wounds cleanse away evil, and beatings purge the inmost being (Proverbs 20:30).

I was pushed back and about to fall, but the Lord helped me. The Lord is my strength and my song; he has become my salvation (Psalm 118:13-14).

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast (1 Peter 5:10).

(More: Romans 12:1-2; 2 Corinthians 12:8-10; Hebrews 12:1-2; Psalm 103:1-5; Psalm 116:1-7; Psalm 119:71, 75, 92, 116-117; Isaiah 40; Isaiah 55:8-9; Isaiah 61:1-4.)

THE JOURNEY ENDS

It’s my hope that this Journey of Transformation has been a testimony of God’s ways, power, love and grace. I pray that the Holy Spirit used this story to encourage, to educate, and to challenge you. Never cower in the face of grave difficulties, but trust in God’s sovereignty, goodness, and mercy even when everything in you cries out against them. Because when Life Happens – Jesus Answers. May Jesus lead you gently through your own Journey of Transformation.

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Alterations

On Easter Sunday in 2002 I sat at the dining room table in front of my makeup mirror. This was the first time in months that I bothered to apply makeup and the lighting revealed changes in my skin. The texture was no longer smooth and the pores were huge. It looked acne prone but no acne was present. And if that wasn’t enough, I had a beard — a thin layer of light hair or “peach fuzz” outlining my face.

That’s a steroid for ya. It turns men into women and women into men.

I was the unfortunate recipient of prednisone side effects. I’d been using the drug for six months and that was enough to cause damage. As was the case when I discovered bald spots on the back of my head on Steve’s birthday, I tried to make myself look pretty. I felt altered. It took herculean effort to muster a good attitude. I forced a smile at chapel but inside I grieved. Of course, no one else knew the difference, but no one else had my face. I hoped these changes would be reversed if I quit taking prednisone. (I will go ahead and tell you now they never were. Physical changes from prednisone usually are permanent.)

In the meantime I continued my supplement regimen hoping that it would be strong enough to hold off the disease process. But soon my hopes would be dashed. One day in the bathroom I looked down at my legs. They were covered with red-purple blotches. It looked like my blood was trying to escape. Along with this horrifying discovery came irritated elbows and knuckles. Red streaks lined my fingers. An excruciating blend of weakness, pain, and burning attacked my upper arms.

These alarming new developments prompted me to contact Tricare to see if I could get a different rheumatologist closer to Clarksville. They accommodated my request and I managed to get an appointment scheduled for June.

By the time June rolled around my condition deteriorated. Every activity was a chore. I was so listless that even holding my Bible was hard. I didn’t want to listen to the radio. Didn’t want to read. Didn’t want to watch TV. I lay there staring at the ceiling praying to God in my mind, “Lord, I’m too weary to move my lips. Read my heart.”

It wasn’t long before someone recognized the severity of my health. Steve got word that we were being sent back to Fort Carson. It was sort of a compassionate reassignment without the official title. It really was more of a compassionate early PCS. Under normal conditions we would have remained at Fort Campbell for another 6-12 months. God orchestrated this move and had the Army send us back to where I had family and access to better specialists.

Because we only had a month before moving I canceled my appointment with the rheumatologist. What was the point of getting started with a new doctor when I was leaving? I was ready to move on, ready to get back home.

God came through with provisions for our move. It was obvious he had everything worked out ahead of time. Again I would see Him acting on my behalf. Yet, I sense a question circulating, “Why did He allow this to happen to you in the first place?” That question would be answered in months to come.

THE JOURNEY CONTINUES:

“Why?” It’s a question we find ourselves asking at times, especially when something horrible happens that seems to have no valid purpose or reason. I like to have answers. I like information. I try to figure things out. I need to know that somehow God will replace my ashes with beauty, my grief with joy (Isaiah 61:3).

What I’ve come to accept is that God will always be incomprehensible. God has a plan that involves the universe and I’m a microscopic part of that. God’s plan is something so massive and astounding that I wouldn’t understand it even if He tried to explain it to me. When I get outside myself and acknowledge the fact that life involves things much bigger than me, and recognize that God is God and that He has eternity in mind, my perspective becomes a little clearer.

All I can do is throw myself at His feet in surrender and trust that He will make all the suffering worthwhile. . . . He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end . . . (Eccles. 3:1-9).

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Life Happens – Jesus Answers is a weekly column addressing the challenges we face in life, coupled with the presence and grace of Jesus, our One True Source of hope and peace. The column’s author, Laura Firtko, can be reached by email here: LifeHappens@pwoc.org

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Clash of the Specialists

It was November 2001 when I landed in the dermatologist’s office. Dr. Honl was kind, compassionate, professional, and deeply concerned about me. Days later I ended up in the rheumatologist’s office. Dr. Linney (name has been changed) wasn’t so concerned.

The battle of the specialists began.

The first time I visited Dr. Honl she carefully examined my skin. When she noticed my shins she asked, “Do you ever use lotion?” I replied, “Yes, but it takes too much energy to get down there and apply it. I don’t do it often.” The skin looked dry and scaly, almost with a marbled, shiny appearance.

She looked at my fingers and toes. Apparently the ulcers that were forming on the bottoms of my big toes did so because circulation was lacking. The Raynaud’s Syndrome was kicking in more and my hands and feet often turned purple. It was hard to keep them warm. The calcifications and burning sensations on my knuckles and finger tips definitely suggested a serious autoimmune problem.

After assessing me completely Dr. Honl announced, “I think you have a connective tissue disease called dermatomyositis. The skin lesions and muscle weakness are consistent with that.” I told her that other doctors stood firm on the diagnosis of lupus. She was certain that these new eruptions were not signs of lupus although there could possibly be some lupus mixed in. Was she correct?

An official diagnosis had to come from a rheumatologist – a specialist who deals with autoimmune diseases. I’d been here before. The rheumatologist I saw in Bowling Green, Kentucky, who seemed more interested in collecting his fees than he was in helping me, was the guy who gave the “official” lupus diagnosis. But now maybe I would have a doctor who would exert some effort in nailing down this mysterious disease process.

Tri Care assigned me to a rheumatologist named Dr. Linney who happened to be the same one my sister saw. Some doctors are better than others and both of us struck out with this one. After examining me he affirmed the standing diagnosis, “You have lupus.” I said, “Dr. Honl, my dermatologist, thinks that I show definite signs of dermatomyositis.” How did he respond?

Dr. Linney’s cold demeanor nearly made me shiver. There wasn’t a hint of warmth or concern in his expression. With a determined arrogance he refused to give Dr. Honl’s diagnosis a second glance. Something was wrong. I sensed in my spirit that this guy was putting his pride before his patient. It was clear to me that he stood firm on his opinion because he couldn’t handle conceding to a dermatologist – a female dermatologist at that. After all, he was the big rheumatologist and he had to be right! But was he?

Power and control. That’s what it was all about. Where did that leave me? I revisited my Merck Manual and read about dermatomyositis. It sounded scary. It could put me in wheelchair. It could take my life. But for the time being, lupus reigned.

A year from this point I finally would have the right answers, but until that time God had more things in store for me – a visit with a naturopathic physician was on the horizon.

THE JOURNEY CONTINUES:

Through life’s uncertainties I have learned to lean on Christ. If I never had any problems, if I got all the answers I wanted, and if everyone agreed and got along . . . I’d be living in Pleasantville where everything is black and white. Boring! I want color! I want vibrancy! I want to live.

Regrettably, living involves pain. Living involves unanswered questions. Living involves power struggles between people who won’t agree. Life is a big mystery held in the hands of a big God who has something bigger in mind than we can comprehend. Trusting and waiting are hard, but they are what I must do.

Since ancient times no one has heard, no ear has perceived, no eye has seen any God besides you, who acts on behalf of those who wait for him (Isaiah 64:4).

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Life Happens – Jesus Answers is a weekly column addressing the challenges we face in life, coupled with the presence and grace of Jesus, our One True Source of hope and peace. The column’s author, Laura Firtko, can be reached by email here: LifeHappens@pwoc.org

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Insults, Dippy Doctors, and a Road Trip

During my mysterious symptom accumulation, I landed in the office of a new primary care physician whose kindness and sensitivity were astounding. Not! After hearing me talk about my strange symptoms and the tentative diagnosis of “lupus” given by previous physicians, he examined me and asserted, “I think you have fibromyalgia which isn’t recognized by the medical community as a real condition. You are depressed and your symptoms are largely psychosomatic.” I replied, “You think these symptoms are in my head?! You think I’m making them up?” I was insulted.

How is it that I was given a fairly accurate diagnosis in Germany, then ended up at Fort Campbell with doctors who couldn’t agree? Part of the problem is that many autoimmune diseases mimic each other. Getting a final, accurate diagnosis is difficult until you have enough symptoms that fall into a certain category. It’s even harder with mixed connective tissue diseases because they can affect every part of the body. Ultimately, to be considered official, my diagnosis had to come from a rheumatologist — a doctor who specializes in autoimmune diseases like rheumatoid arthritis, lupus, and others. 

Unfortunately, specialists like these can be hard to find. The closest one who was available to see me in a reasonable amount of time was located an unreasonable distance away … in Bowling Green, Kentucky. Oh, it was only a two-hour drive. And, it didn’t matter that this doc spent more time in the hallway talking to his nurses than he did with me in the examining room, did it? Nor did it matter that he was from the Middle East and I couldn’t understand most of what he said. Although irresponsible of him, did it really matter that he offered me samples of prescription drugs for conditions I didn’t even have? No, not really. After all, to him I wasn’t a human being with feelings. I was a number preceded by a dollar sign. He had visions of greenbacks dancing in his head.

Drives, distances, and dollar signs aside, at least this specialist guessed that I probably had some kind of autoimmune disease. Wow, what a revelation! His guess was nothing new and he arrived at it without much investigation. As a result, I still didn’t have a definitive diagnosis from a rheumatologist. I suspect this dude gladly welcomed me to his office for as long as I would endure his malpractice. I visited him a couple more times then gave up.

Toward the end of February Steve traveled to Fort Jackson, South Carolina, to attend school. By early March my condition worsened. Cooking, cleaning, and shopping rendered me breathless and exhausted. I wasn’t eating enough and spent more time in bed. Something needed to change or I would deteriorate. So, I placed Bridgette, our beagle, in a friend’s care and managed to hitch a ride to Fort Jackson with a military family. They “just so happened” to be heading the direction I needed to go. Yeah, right. It was no accident. God is totally in control of everything. This was just one example of the Lord’s timely provision along this journey.

While Steve was in classes I had plenty of time to read and pray. Each day I sat in a cozy chair by the window and looked out toward the evergreens in the distance. They reminded me of the trees at Ramstein Air Base in Germany. It was beautiful there. I love God’s creation, and I dreamed of one day living in a place that had beautiful trees.

In the meantime, resting had top priority while new symptoms grabbed my attention. What I had experienced thus far paled in comparison to what lie ahead. This journey was about to lead me down Heartbreak Road.

TO BE CONTINUED …

Women of PWOC, stay connected! Life Happens – Jesus Answers will resume with the “Journey of Transformation, Part 6,” on Thursday, January 14, 2010.  The Blog will be featuring posts on Thanksgiving and Advent over the next 6 weeks.  Be sure to enjoy them and share them with your family and friends.

During this season, be sure to cherish the precious moments you have with your families, and reflect on the grace and provision that God extended to you in 2009.

Happy Thanksgiving, Merry Christmas, and Happy 2010 to all of you! When you’re walking through the commissary or down the street in your neighborhood, wish everyone you meet a “Merry Christmas!” After all, it’s only because of Christ that we have a reason to celebrate.

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Life Happens – Jesus Answers” is a weekly column addressing the challenges we face in life, coupled with the presence and grace of Jesus, our One True Source of hope and peace. The column’s author, Laura Firtko, can be reached by email here: LifeHappens@pwoc.org

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