This Crazy Roller Coaster

Just 14 days ago I received good news from the doctor which hadn't happened in 16 months. I can't begin to relate the excitement I felt that day. Still do. When his office didn't call with information about my latest lab results, I knew it was good news. Either things had improved or at the least, everything had remained the same. The old adage of "no news is good news" certainly proved to be true.

My injections have been alright the last 3 weeks--I just took my 6th one yesterday. After the 3rd one there was suspicion that I wouldn't be able to continue and I was seriously bummed because the initial results were so promising. But then came a fairly severe reaction to the site injections. It was a miserable 5 days in mid-March but after a consultation and some good advice from the amazing NP, things have gotten better. Sadly, I've experienced no positive improvement since that time, at least in how I feel physically. It's yet to be seen what the blood tests will show in a couple of weeks. One of the nurses told us the immune system is like a big submarine and it doesn't turn on a dime but even so, the initial weeks were so amazing I knew I would be an exception. Yeah, nice thought.

I find myself on this crazy roller coaster. The new medicine worked...UP I go. The lab tests were not so great...DOWN I go. The new medicine causes a negative reaction...DOWN I go. New lab tests prove promising...UP I go. The reactions to the injections calm down...UP I go. I attempt some "normal" activity only to hurt so badly I am in tears and cannot sleep....DOWN I plunge.

So here it is, 2 a.m. and I am getting just minutes of rest at a time before the sharp, searing pain jolts me awake. Pain so intense the tears roll down my face. I am not allowed (or at least have been strongly advised to stay away from) anything that will ease my discomfort. I finally got up to allow Steve some solid rest and am doing what a normal, sane person would do at this hour and with this problem...watching a movie and drinking diet Mountain Dew:) I am thoroughly, completely and utterly exhausted. Desperate for 6-7 hours of uninterrupted sleep.

As this uninterrupted sleep eludes me, my thoughts run rampant about this insane ride I am on. I long for an even-keeled, smooth ride like "It's a Small World" in Disneyland. Something predictable, easy and calming. Yet this season seems to doom me to a never ending roller coaster. I keep zooming past the ride operator waving my arms furiously to stop this thing yet he just pushes me on.

I've never been a fan of roller coasters. Now I know why.

Tears In The Darkness and Blessings Too

Last night as we were about to fall asleep I said to Steve, "I have a well of tears hiding behind my eyes." He asked why and all I could come up with is that they'd been building and I just hadn't let them go. He took hold of my hand and said "well, let 'em go". I don't know that he realized at that moment how long that could take....rest assured he fell asleep long before the tears stopped.

Sometimes the pain is so intense I can do nothing else but cry and that was part of my problem last night. For reasons I'm keeping close and private for the time being, I cannot take anything for the pain--4 weeks and counting. I've always had a fairly high threshold for pain and as time goes by, I raise that bar higher and higher. It's not that I want to be a martyr about it or anything, it's just out of necessity. Fortunately in the pain the lessons abound.

Also at night the tears fall because this is when I experience more than half my fear. It's now at night I must take my injections and for me to go to bed after that terrifies me for if I had a reaction I may not wake up in time. It's in the night when I feel most alone, small and insignificant. It's in the night when I am alone with my thoughts and recall far too easily how I've failed, what I need to do but can't because of my limitations and all too soon I am consumed with a laundry list of things I have to do. No, must do. Believe it or not, there was a time when this worked to my advantage. I had a job where nighttime thinking was my friend. I came up with the best ideas when my mind refused to shut down for the night. I even kept a legal pad on the nightstand to jot down my ideas so my mind could relax and drift off. Yet now this once great friend has become foe as it torments me with what could have been, should have been and never will be.

The tears come so easily in the darkness and are most difficult to control once they do. So how in the world can there be blessings in any of this? Being a firm believer that all circumstances come with lessons and determined to find some brightness in this difficult time, I force myself to search for them. I've discovered it's a guarantee for me to find them when I search earnestly. A few of my blessings....

1. God is teaching me the difference between what I say I believe and what I'm actually believing. I say "God is in control of my days and they are numbered" and I really think I believe it. Yet I obviously don't or I would not worry about a reaction at night being the end of me. I should not worry if I believe God is in control. This line of saying vs really believing will make a huge difference in my growth...once I cross it.

2. The physical pain that is a mainstay these days gives me a keen sense of the pain that surrounds me. People are hurting and just as nobody can see my physical pain, often times I cannot see the emotional, mental and physical pain around me but it's there just the same. I need to remember this to keep me from being self-involved.

3. Admitting to myself and to God (although he knows already) that I am consumed with fears is a crucial first step in getting over them. And get over them I must or I will retreat into the safety of my home environment which I can control and in so doing I become the host of a major pity party and agoraphobia takes over my life.

4. Every time I do something like lead Bible study, emcee at Spring Fling or otherwise fill a public role, I am demonstrating that it is not me doing it in my own strength. It is Christ in me. Many times I have the desire and tendency to curl up at home and watch a movie or read a book yet once I've made a commitment I know I must go forward and so I do - just not in my own strength. This is where God gets the glory and I get the privilege of being used for His purposes.

The tears may fall and on occasion I more than willingly let them because the end result is blessing and glory.

And Just Like That, It Was Over

Thursday was so busy for me I didn't have much time to think about my appointment at 4. That was a good thing.

We arrived about 5 minutes early and this was seriously the wrong appointment to make me wait until 30 minutes after my scheduled time. The most fabulous nurse did our injection instruction. It was such a privilege to be under the care of Jim--he is compassionate, understanding and has the most amazing bedside manner. He spent the first few minutes discussing all sorts of things with us and even had a training needle / plunger to use. He insisted we try it that way first.

Then it was time for the real deal. I had fully intended for Steve to give me the injections but Jim stared me right in the eye, pointed his finger and said, "no, YOU will do this one. What you do after this one in the office is up to you but today it's YOU!" See, when I asked the NP about it the week before, she said they recommend I do my own but it was totally up to me. Apparently not under Jim's watch! In retrospect, he was extremely wise for forcing me into it.

Jim walked through each preparatory step with us and I sat there with the plunger on my leg for what seemed like an eternity staring at the trigger. He said "whenever you're ready, go ahead." Truth is, I was never really going to be ready and it made him smile when I told him so. I finally clicked it and sat there watching the lever in the window portion while the medicine was pushed into my leg. I'm not kidding when I say it hurt; kind of like a tearing and burning at the same time. But I don't think it was the physical pain of the shot that hurt so badly because I've been in far more pain day in and day out. It actually paled in comparison, particularly considering it was 30 seconds rather than 24 hours a day.

I found myself in more of an emotional trauma watching the level of medicine as it lowered into my body. It was the strangest thing, almost as if I were watching it from a distance on the leg of someone else (except of course the pain was all to real for that to be the case). The tears streamed down my face and I had no ability to control them. Steve was to my right and he put his hand on my shoulder, whispering that it was okay and I was doing fine. Jim was in front of me and he patted my knee assuring me it was going well. Once the needle was out Jim handed me some cotton and told me to press on it for 15-20 seconds. After about five he tapped my hand and so calmly said "relax Julie, don't push so hard." I looked down only to realize my fingers were white from pushing so hard.

And then it was over. Until next Friday that is.

Jim sent us to the waiting room for 10 minutes to ensure there were no immediate side effects requiring medical attention and then he helped me with my coat, patted me on the shoulder and said "you did good kiddo." The side effects I experienced in the following 24 hours were completely normal and very minimal. I had some tingling in my left foot and hand and then I was fairly fatigued and slightly nauseous but both of those should lessen as my body adjusts to receiving the medication.

It will take anywhere from 2 to 12 weeks to see how well it will work.

T Minus 2

This past week I've been fairly melancholy and probably even extremely sad. All week long I've wanted to wrap myself in a blanket, lay in the recliner and entertain myself with movies. Yet that is not an option for me. I must press on and do what I've been called to do, despite how I feel....my feelings are not usually to be trusted and certainly not now. If I were to gauge my life on how I felt, I would be a bigger mess than I already am.

Last Thursday I received a call from the doctor's office and the message simply was "Julie this is XX, a nurse from Dr. A's office. Can you please call us back about your recent lab results?" I've been doing this thing long enough to know that is never a call to tell a patient how they soared through the tests. They call for one reason only--something is wrong. And so it was. I hardly had enough time to compose myself before I headed to the church to lead Bible study.

This week we finally got word that the insurance company had approved the new medication for one month. We attempted to pick it up yesterday only to discover it has to be ordered. We went back today to get it and I made an appointment at the doctor's office for "injection instruction" on Thursday at 4.

And the thought of it makes me so sad I can barely stand up under the sorrow. I retreated to the bedroom, curled up in my favorite barrel chair, wrapped my arms around a pillow and wept. Steve allowed me several minutes alone before he came in and sat in front of me.

"I don't want to do this," I whispered.

"Why?" he asked.

"Because it's what sick people do." I could barely eek out the words.

"Baby, you ARE sick. This may very well be the thing that enables you to function again."

"Will you still love me if I choose not to?" I asked. The insecurities I have fallen into since the onset of this thing are almost beyond comprehension.

"Of course I'll love you." Steve never wavers.

"Would you do it if it were you?"

"Absolutely. No question."

And so we go forward. T minus 2 days. In 48 hours this initial treatment will be injected in my body and hopefully with the plunge of that needle, all my fears will wash away. Of that I am skeptical for my fear is a spiritual problem and contradictory to my faith.

"For God gave us a spirit not of fear but of power and love and self control." ~ 2 Timothy 1:7 (ESV)

I am okay with having these feelings and I don't think it means I don't trust that God is in control. I do; yet I am human and frail. He understands my frailties and the fact that my heart is broken is of great concern to Him. It also doesn't mean I lack faith but rather God is shaking the world around me so at the end of all this I will stand firm on one thing only--Him.

Onward We Go & Yet We Praise Him Still

In December I went for my regularly scheduled doctor's appointment and knew going in my current treatment wasn't working as well as we need it to. The Nurse Practitioner handed me a couple of brochures on a new treatment which I promptly put in our office and didn't look at them until the day before my appointment this week. I just couldn't bear the thought for several reasons. First, it is by injection and the thought of giving myself an injection creeps me out. Second, the side effects scare the daylights out of me. Third, it's expensive.

Steve read it all within a day or so of when I received it. Knowing I was going back to the doctor Monday, I brought it out and read it. There wasn't a whole lot in there I didn't already know. I compiled a list of questions and took Steve with me for this visit. Certain I would never make it through that visit without tears, I prayed for strength as I never have before. That prayer was answered as I was more rational and composed than I have been in months! I was able to carry on an intelligent conversation rather than a blubbering idiot one. Steve also had a couple of questions I hadn't thought of so all in all, it was a decent appointment.

As expected, the clinical observations were that I was doing more poorly than last time and while I might sustain at the level I am, I will certainly not get better and I am no where near being able to function adequately. The one bright spot in the visit is that the NP remarked on my "exceptional" strength. Totally cracked me up. To be honest, when she asked me to push against her, I sent her and her chair flying backwards, mostly due to the fact that she didn't expect it...I think. Knowing how much strength I've lost, I now long for the days when I was strong for real.

We left there with the decision made to go forward with the first line of biologic treatment. They are hopeful it will work well for me as it does for so many other patients. As soon as insurance approves it, we can begin. I had hoped for this weekend but apparently it can take 5-7 days for approval and then the pharmacy has to get the medication in. So, it looks like next week is a more likely target.

Amazingly, there is a blessing in all of this. I shouldn't be so shocked as we serve an amazing God and I know for certain He is in the midst of this thing. The drug company has a program where they cover what the insurance company does not for 6 months, up to $4,000. By then we should know if it will work or not. This is provision as its best!

Now I am trying very hard not to play the "what-if" game. What if it doesn't work? Then what? The other options are increasingly expensive. What if I am one of the rare individuals with extreme side effects? What if I die? I can drive myself crazy with the "what-ifs". So I must choose to rest in this:

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalm 139:13-16 (NIV)

and

"Praise the Lord, o my soul, and forget not all His benefits--who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's." Psalm 103:2-5 (NIV)

God knows. He created me, He knows what is wrong and God alone heals. If He does not, I will yet praise Him, my Savior and my God.

Two Sides of the Same Psalm

This morning I was in Psalm 13...remember my commitment to plod through the Psalms this year? I was suddenly struck by the stark contrast of emotions contained within the few verses. This actually happens quite a bit in the Psalms but for some reason it just hit me as fresh revelation today. Since it's short, I will put the verses below to help understand my connecting points.

How long O Lord? Will you forget me forever? How long must I wrestle with my thoughts and every day have sorrow in my heart? How long will my enemy triumph over me?

Look on me and answer, O Lord my God. Give light to my eyes, or I will sleep in death; my enemy will say, "I have overcome him" and my foes will rejoice when I fall.

But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for He has been good to me.

The Psalm begins with questions and a seemingly confused writer (David). He doesn't understand why it's taking so long for deliverance to come. How long O Lord? Man, I can so relate to that one. Then comes what I see as a beautiful word--but. But what? "I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for He has been good to me."

Here's what grabbed my attention. It is not an either / or proposition. It is an "and" proposition. What do I mean by that? I don't have to choose the mis-understanding or confusion over the rejoicing and singing. I can have both sides of the same Psalm!! I can be confused as to why God is delaying in my deliverance and at the same time wallow in praise for all the good He has done for me. It is there--I just have to choose to find it.

Last week Steve did a project for one of his classes. He had to write his life story beginning with birth and leading up to how he ended up in ministry and what's going on now. He was instructed to use different colors of sticky notes to delineate the good things and key people in his life from the bad things that have happened in his life. He used green for the good and yellow for the bad. Once he completed it he had to show it to someone and report on their observations. Since I was 12 feet from him when he completed it, he showed it to me. The first thing I noticed was the overwhelming amount of green compared to yellow.

The point? Yes, there are hard, even devastating things that happen in all of our lives. There is death, sickness, failures, not getting a promotion and the list goes on. But there are amazing things that happen to us too. There are births, graduations, influential people, professional success, spiritual victories and so much more. When I saw it all compiled on that poster board it took my breath away.

Yes, I will sing, must sing, to the Lord for He has been GOOD to me!

A Change of Perspective

It's been a really strange week of up and down moments which normally would put me on a wild roller coaster ride. Yet I seem to be leveling out a bit and running on more of an even keel. Obviously that is subjective....Steve runs on an even keel and it is SERIOUSLY even so compared to that, my "even keel" is not exactly even. But compared to where I'm coming from, it is unbelievably even. No doubt this is part of my growth and I am quite pleased.

The week began with me falling at church once again. Everything in me wanted to jump back in the car, drive home, get in bed and sob. Instead, I fought back the tears, took my post and resumed my duties. I spent the afternoon and evening in much pain, sitting in the recliner and napping. Monday was much improved and I was mentally and emotionally the better for having fought against my natural inclination to run and hide. There is no victory in that.

Today I went to the doctor, a much dreaded visit that didn't turn out all that badly. I believe this is due in large part to the friends who were praying for me. Until tonight. I just recovered from tears because I feel so utterly humiliated. It's not that the doctor was unprofessional, rude or rough. She was not. She was compassionate, genuine and had an amazing bedside manner. But medically speaking, some things are just difficult for me to bear even under optimum conditions. This was one of those.

I've realized a couple of things this week. This test of my faith and battle for my health is a place I have to venture alone. Sometimes God brings those things in our lives that are just for us and Him. No one else is permitted in. That doesn't mean people don't walk through it with us but rather they don't get to journey into the innermost places. As a matter of fact, it is critical that I have people surrounding me, walking with me, praying for me and distracting me when possible. But they can't enter in.

Last week's Bible study lesson was on this very thing. At the end of the video as I stood up to teach the portion of the lesson I had prepared, I could barely contain myself. I told the ladies I was about to burst into tears because in my heart I knew "this revelation is for me. It's exactly where I am. It IS me."

The following points are verbatim from session five of "David: Seeking a Heart Like His" by Beth Moore (study distributed by Lifeway); pages 102-103:

1. Further still...when you are overwhelmed with sorrow.

2. Further still...when you desperately need to wrestle with the will of God.

3. Further still...when nobody else gets it.

4. Further still...when the most serious matters of your life need settling.

5. Further still...when life can't be the same but the pain can bring gain.

This season of life is a "further still" for me. I can't possibly say it any better than what has already been said. It is an enormous step for me to realize this.

The second thing I am also coming to terms with is something I've been wrestling with for months. I've been asking difficult questions of God and I don't think that makes me a heretic. Quite the opposite actually. The Psalms are filled with such questions.....how long O Lord? Will you despise me forever? Why O Lord do you stand far off? I haven't verbalized these exactly but definitely versions of them. I don't understand much of the reasoning behind this test. So the questions I must answer are....is God any less good today than he was 16 months ago when all this started? Is He less Holy? Less sovereign? Less...(fill in the blank)?

What exactly am I basing my faith on...who God is or what He does? This came directly out of my lesson for today (the same study indicated above). The exact words I read were: "Basing our faith on who God is rather than what He appears to be doing is crucial to our spiritual health." (page 120)

When a friend asked me a couple of weeks ago how the study was going, I replied "it's amazing. It's tearing my heart apart." That's not bad. On the contrary, this is a good thing.