Two Bodies, One Disease

In my body, the wiring of my immune system is all awry. The green wire is evidently connected to the black, the white wire is connected to the blue, and the red wire is just left bare and exposed. The result? I have a very, very hard working immune system - but it puts all its energy in the wrong places. Basically, it can't tell friend from foe - so it ends up attacking my own healthy cells as vigorously as it would attack a foreign threat. The way I've explained it to my nieces is to imagine two armies facing off in battle: the invading troops have all their guns pointed at their opponent, but the "home team," with all their guns, turn and aim at one another! What would the result of that war be? Total annihilation of the home team!

Welcome to my body.

So how are autoimmune diseases treated? The most common way is to disable the immune system, or at least to cripple it. (Basically, the guns are taken away from the army. They are left with pocketknives to fight a war.) With different levels of severity, medications are given that shut off the body's ability to fight -- the same medications that are given to organ transplant patients to prevent Graft Vs. Host disease. The good part about that is my body quits attacking healthy cells (OK, so it reduces the amount,) but unfortunately it means I'm also less able to fight off real threats, like the chicken pox and pneumonia that hospitalized me this year.

So it's a lifelong game of walking a balance beam, trying on one hand to minimize the amount of self-attacks, but at the same time leaving some kind of arsenal for my body to fight off the true threats.

But there's another body I have seen that suffers from the same autoimmune disorder.

And that is the body of Christ.

❝For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places.❞
--Eph 6:12

Or, at least, we should be.

But what I see happening with startling prevalence is that we do fight flesh and blood -- and to the heartbreak of our Lord, we too often fight one another. We war within the very body of Christ.

We erect a building and we call it a church, and then we hang a painted sign over the door with a name that we feel designates us to be the right ones of God. Or we meet in a living room and feel spiritually superior to those who don't. And heaven help those who meet under a different umbrella!!! We grab onto a piece of doctrine and claim that those who don't subscribe to our brand of doctrine (which of course is THE right doctrine) are not as close to God as we are.

But this isn't new.

Jesus scolded his disciples about this very thing. Once, 'The Twelve' told Jesus about something they had done, undoubtedly proud of it and expecting kudos from the Lord. "Teacher," they said, "We saw a man using Your name to cast out demons, but we told him to stop because he isn't one of our group." Can you hear the pride in that statement? He isn't one of our group. Can you see the Twelve fist-bumping each other for their brilliant move and holding out their fists to Jesus, expecting Him to fist-bump them back? But He rebuked them.  "Don't stop him!" Jesus said. [Imagine the shock on the disciples' faces right about now.] "Anyone who is not against us is for us." [BAM.] Jesus then went on to say that it would be better for anyone who causes someone to lose their faith in Him if they'd had a 130-lb rock tied to their neck and they were thrown in the sea. Wow! Can't you see the disciples' egos deflating like an untied helium balloon?

Ever since the beginning, followers of Jesus have had to fight the temptation to view the world in terms of "us" and "them." Instead of berating disciples for doing something differently, might Jesus want us to encourage them for following the Lord?

We put being right above being loving.

But this isn't new.

Two thousand years ago, Paul of Tarsus had to deal with believers in Galatia who were being nasty to each other. He encouraged these believers to "serve one another through love," reminding them that the entire Law and every prophet's message could be distilled down to one thing: Love. "But," he warned them, "If instead of showing love among yourselves you are always biting and devouring one another, watch out! Beware of destroying one another." So we should live according to our new life in the Holy Spirit!

"What horrible people those were way back then! I'm glad we're not like that today," we say.

HA! OK, so what does autoimmune disease in the body of Christ look like today? As I said above, one major symptom is the sign hung above the door of the building some call churches. Within 5 minutes of meeting another believer, I can almost guarantee the question, "Where do you go to church?" will be asked. There is only one purpose of these titles and names: To divide ourselves. What is a denomination, other than a portion being denominated (divided) from the whole? Oddly enough, there are even certain groups who say that they are not a denomination. (If that's not an oxymoron, I don't know what is!) They come up with definitions of a denomination with only the traits they don't possess; for example, a common one I've heard is that you're not a denomination if you don't have a central governing body (such as the regional, national and international chains of command). But having a hierarchy outside a local group is not the definition of a denomination. Being divided from the whole is the definition of a denomination!

Other ways we see spiritual autoimmunity is in spreading gossip about one another, by not helping one another when we have the means to help, by not becoming invested in one another's lives - you know, being a true community and family! Instead, we go about our everyday lives without connecting with each other in meaningful and sacrificial ways. The picture of the earliest church is an astoundingly beautiful one, but unfortunately it is all too uncommon in our day.

It is long past time that we drop all the walls of division among believers. What would happen if we truly took seriously Jesus' prayer in the garden before His arrest? Imagine you are God made flesh, standing on the earth for the last time as a free man, before your arrest and execution. You have only a short amount of time to talk to your Father in heaven. Don't you think that what that prayer includes would be some mighty important stuff? I do! And that's why the fact that Jesus uses this time to pray that the people who believe in Him would be united in the truth by the Spirit is no small thing. Yet it seems like we are continually inventing new ways to divide from one another and attack each other!

Jesus showed no partiality when He walked the earth 2,000 years ago. He loved, served, and taught those within His circle and those outside of it. By example and by word, He taught His disciples to do the same thing - and then He told those disciples to teach & show others how to do the same. At every turn, Jesus and His apostles tried to nip division in the bud -- yet it flourishes today.

Jesus said, "Love each other. Just as I have loved you, love each other. Your love for each other will prove that you are My disciples."

Yet Gandhi said, "I like your Christ, I do not like your Christians. They are so unlike your Christ."

Read that quote again, and let it break your heart.

If we, as those who bear the name of Jesus Christ, cannot truly love each other, how can we love unbelievers? How can we even claim to love God?

If we cannot stop biting and devouring one another, how can we expect to have anything appealing to offer the world?

We must remember that other believers - yes, even those who think differently - are not the enemy. ("He who is not against Me.....") If we are not a source of healing & love for the other members of the same body we are a part of, how could we ever help heal others? We also need to remember that the enemy is not the people outside of the church. Because we are a priesthood, our job is to intercede to God on behalf of those people! (Think of Abraham & Moses who pleaded that God would not destroy the people because of their disobedience.)

So as I will be doing, I would highly encourage you to go before our Advocate, Jesus Christ, and ask Him to reveal the ways in which you & I could improve in the way we show love for one another. Not in word, but in action. In the kind of way that would rock the foundation of our society, because love like this cannot come from any natural source. A love like this is truly supernatural, and I believe the world would sit up and take notice if they saw this kind of love in action. Instead of adding fuel to the enemy's fire, let us kindle a holy love between one another that would spark into the hearts of others.

Our God in heaven is the Great Physician, and He has the power to heal this spiritual autoimmune disease that is running rampant in the body of His Son. What is the treatment? An overflowing and constant dose of LOVE. Love for Jesus, love for His Body (which is Jesus in the flesh, a.k.a. the church), and love for others. Are we willing to submit to this treatment? (There is no danger of overdose!) My final thought for you is from 1st John (which is an excellent source of encouragement in this area):

❝Let us love one another, for love is of God; everyone who loves is born of God and knows God ... if God so loved us, we also ought to love one another ... if we love one another, God abides in us ... God is love and the one who abides in love abides in God ... If someone says, "I love God," but hates his brother, he is a liar.❞

What are some practical things we can each change in our own lives (with the emphasis on introspection, not  jumping right back in the U.S.S Criticize-Your-Brother ship) that will help heal this systemic disease and repair the damage?

Integrity - at what cost?

"Some people like my advice so much that they frame it upon the wall instead of using it."
--Gordon R. Dickson, American author

I wonder how often Jesus has said the same thing?

Put plainly, if our study of God's Word is an intellectual journey void of real-world application, it's a false journey that does not please God. Time and again the Holy Spirit tells us that it is the "doing" of God's word that is important, not the hearing. Are you ever struck by situations in your life that cause you to come face-to-face with a principle, and you're put in a position of having to decide if you'll live out what you've claimed in theory? That happened to me today.

This last Sunday, my husband co-taught a Bible class based on Jesus' "sermon on the mount," and this particular lesson was all about deep integrity. Jesus calls us to be people of such integrity that there's no oath or swearing we can add to our words that would make them be any more meaningful. In class they read from Randy Harris' book, "Living Jesus" about a question Randy poses his students every year. We all like to say that we are honest people and wouldn't lie, but Randy challenges us to see if we would stick to that when the stakes are high. Here's his scenario (and I'm paraphrasing it here):

Imagine you are a college senior in the last semester before graduation. You are an accounting major and seemingly have everything lined up perfectly; you have a fiancé ready to marry you after graduation, you have a job offer with a reputable firm, and everything seems to be falling into place. The only problem is, you find out that you are short one class in Literature of all subjects! The registrar fits you in to the last class available on classic American literature. All semester long you plod through books like The Scarlet Letter, Huckleberry Finn, and To Kill a Mockingbird. You've read each one and done well on the tests. The final book assigned is Moby Dick -- all 800+ pages of it. And it's all about whaling. You are from a small farming town in Kansas, and the thought of reading about whaling - especially with the semester winding down and all of the graduation ducks lining up - is just more than you can bear ... so you read the Cliff's Notes and watch both Moby Dick movies. You feel confident that you can answer any question on the final regarding any question the professor could throw at you about Moby Dick. But to your shock, when the final is handed out there is only one question to the whole exam: Did you read "Moby Dick?" Your Literature grade - your credits necessary for college graduation - which are needed to land that good job and be able to marry your waiting fiancé -- that all rests on the back of one question. Did you read "Moby Dick?"

What would you answer?

According to Randy Harris, year after year 95% of his students say they would lie on the question. (He also wonders how many of the 5% lied about the fact that they would lie.)

Today I had an appointment with my rheumatologist - the specialist who coordinates the bulk of the care regarding my very rare autoimmune condition, Behçet's Disease (BD). Because my disease is so rare - the most common figure I hear is that there is somewhere between 10,000-15,000 people in the United States with that condition. (For comparison, the football stadium at my alma mater - Boise State University - currently holds 34,000 people.) Last spring I started receiving infusions of a chemotherapy drug called Remicade to treat my BD, but because Remicade is not labeled by the FDA for use with BD, my insurance company revoked the coverage and I had to discontinue my infusions - therefore losing the benefits I had already gained in just 3 treatments. In my appointment today my doctor talked to me about some of my options - but sadly, there aren't too many out there. (The next medication we're looking to start is Enbrel, which would be a weekly injection I would give myself in the muscles in my abdomen.) The same problem exists with every medication - there is no such thing as a medication labeled by the FDA for Behçet's. Most insurance companies will approve "lesser" medications in a situation like this, when valid use can be assumed for conditions similar to those on the label. However, the more expensive the medication gets the more incentive the insurance company has to deny the claim - and considering that each Remicade infusion costs around $20,000 (and I'd get an infusion every 6 weeks), they have a lot of incentive to deny me! To fully understand the benefit of these medications you'd have to fully understand the devastating effects of a chronic autoimmune disease like BD, which is not something I'll get into in this post. Suffice it to say it is a life-altering disease, which steals away much quality of life from those who have it and the loved ones around them. There is no cure, and few adequate treatments.

So here's where it gets sticky: my rheumatologist suggested that he simply write into my chart a diagnosis that I don't have (such as Rheumatoid Arthritis) - one that is already on the label for the medications we are considering - so that I could be approved, receive the medication, and better control my symptoms thus improving our quality of life.

  

What would you answer?

This reminds me all too much of the warning we find in the book of Job:

"Be careful, do not turn to evil, for you have preferred this to affliction."

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Once again, I worried for no reason

Well, today is Day 1. Yesterday I received my first infusion of a medicine called Remicade. It is the next step up the ladder for me in immunosuppression in the fight to control my Behçet's Disease. [Quick dictionary entry: BD is an autoimmune (AI) disease, kind of like a cousin to the Lupus and Crohn's family that never shows up at the family reunions. Far more rare than its cousins, BD can be difficult to treat because so little is known about it. Only 13,000 people in the US have it ... for comparison, the football stadium for my alma matter, Boise State University, fits 33,500 people. As with most AI diseases, my immune system can't tell friend from foe. Imagine an army on a hill facing an opposing army. While all the soldiers start firing on the opposition, my immune system is the lone gunman that turns and starts shooting at his own men. So my healthy cells get attacked for no reason, causing all kinds of problems. In order to fix this problem, my doctors take away the M-16 from the rogue soldier - in other words, they suppress my immune system until it can no longer effectually fight friend OR foe.]

My hubby and I are so far thrilled to be able to say that I received the infusion very well and have had NO negative side effects. I pretty much slept all day yesterday because of the Benadryl I had to take to minimize side effects - and also, I believe, just as a let-down from all my anxiety. But why was I so anxious?? We have read about Remicade since practically the onset of my BD in 2004, and have been seriously tossing around the idea of starting it for almost 2 years. Last summer was when we made the decision with my rheumatologist to formally apply for insurance approval to start it (again, one of the drawbacks of BD being so rare is that no med is FDA-approved for BD, so I have to ride the coattails of similar diseases for approval.) After several months waiting, we finally received the approval and I started the infusions yesterday. So I guess on one hand I've had plenty of time to get the jitters about this - but on the other hand, I've had plenty of time to turn my worries over to God! Hmmmf. I hate it when I'm confronted with my own hypocrisy.

I knew in the days ahead of the infusion that I had some anxiety going on. After all, who can hear the word "chemo" and not get a little freaked out? (Remicade is and isn't chemo. I don't understand a lot of the details, but I know it's now classified as chemo, but isn't a conventional, make-your-hair-fall-out chemo. From what I understand, all immunosuppressants are a form of chemo.) While I've been on meds before that are also classified as chemo (like CellCept, which nurses in the hospital give the pills to me by a spoon so I don't have to touch it - which was always weird to me. Why is it important for my skin not to touch something I'm putting in my blood stream??) - there's just something different about infusions. My first three infusions will be given at the hospital center of my doctor's office, but thankfully from then on I'll be able to receive them at the local cancer center, trading a two hour round-trip drive for 15 minutes.

What I didn't know until the morning of my infusion was just how nervous I really was. By the time we got in the car and were headed to my appointment (with my trusty best friend and husband at my side, as always), I felt sick to my stomach. I kept thinking, 'How will I be able to tell the nurse if the infusion is making me sick or if I'm just a scaredy-pants??' So while Danny drove, I laid my seat back and had some quiet time. I just prayed to God that I knew I'd gotten myself all worked up over nothing - that not only did worrying not help anything, but we all know what stress does to the body - but even more so, my worrying proved that I was not trusting God. Didn't He already know how the treatment would affect me? Didn't He already have everything in control, whether or not the new med worked for me? So why worry? No matter what my body did, I knew Who held my future.

But here's my question: would I be sitting here this morning, confident in my God and feeling all silly about my worry if I would not have reacted so well to the infusion? What if I was losing my cookies all morning? How often is our faith and thankfulness based on things going smoothly? OK, I guess what I'm really asking is, is my faith too often based on things going smoothly? It's sure cause for me to stop & think. My goal is to have the faith of Shadrach, Meshack, and Abednego. I read about them talking to the king who is about to throw them in a fiery furnace (heated 7 times hotter than normal!) because they refused to worship anything other than Jehovah. They told the king that they did not fear being thrown in the furnace because they knew Jehovah could save them - but even if He didn't, they would praise Him anyway!! Do I have that faith?? No. But I pray I'm on my way.

Rewind #31: Back Home; Back to Life

Original air date: 20Nov2010

Well, the monster road trip of 2010 is now finished - we are back home and back to the “regular grind” (whatever that means!) Even though we’ve been home for a few days, AND we have company coming to stay a few days with us, I have to admit that most of my bags still sit like I dropped them, unpacked! Ugh, I really have to get to that today. Since we got home, Danny and I have each felt a little under the weather, but nothing major. Once a year Danny get a changing-of-the-seasons cold, and he’s been fighting that a few days. I hope he starts feeling better soon -- but I have to be honest that a part of me “likes” it when he’s under the weather, because it’s one of the very few times where I actually get to be a nurse to him, instead of the usual other way around!! I got my flu and pneumonia shots this week after getting home, and then I started feeling really yucky afterwards. I know it’s just my reaction, that it’s not the real flu, but it sure feels the same! But it only lasts a short time, so hopefully I’ll be feeling better soon.

Danny and I just couldn’t be more thankful for the trip we were able to take. It was SO wonderful! Not only was it a time of GREAT fun and a billion laughs, but we also used it as a spiritual realignment. That was very needed. We are both thankful for all the prayers on our behalf for health and safety while on the road, and we know that God heard and answered those prayers. 

Now, we’re onto the next phase! Keep checking back for updates on what THAT means. :-)

Rewind #30: Just Go Ahead and Say "Thanks"

Original air date: 6Nov2010

Our “Roadtrip Extraordinaire” continues! We are having such an amazing time!! We have now been out for over a month ... and we are still several days and states away from being back home. (Wow - where would we be without the friends we have that are holding down the fort back home??) Danny and I are just without words to express how thankful we are for the opportunity of this trip. Right now we are at the heart of the trip - the Homecoming of Harding University ... especially the Jazz/Stage Band! It has been 30 years since this group played together, and the performance they put on today was worth the wait! Just stunning. Danny has been looking forward to this for so long, I can’t even count. Soooo great!!!

The weather has been ideal on the trip - the scenery has been amazing - the timing of everything is just more than we ever could have planned. When we got to Colorado, it was smack in the middle of the elk rutting season, so we got great pictures. We got to Tennessee at the height of all the autumn colors, and by the time we were leaving there the leaves had mostly fallen. We saw thunderstorms in Kansas like California has never seen! (Complete with a tornado siren.) :) And now here we are in Arkansas, and it is just amazing (am I over-using that word?? I can’t think of others more appropriate!) all the things we’ve been able to experience.

Yet in the middle of all these blessings tripping over each other to come in my front door, Satan still tries to cram his way in. Sometimes he almost wins - other times he wins. (But only temporarily!) A couple days ago I got a call from my surgeon’s office, and found out that there was a mistake in the scheduling of my operation. Instead of being November 30th, it will have to wait until December 15th. Needless to say, I was not a happy camper! I was quite bumped and even spent a tear or two on the deal - but then I just went on. This morning I was thinking about the fast pace we’ve been running and the few people we’ve been around that we know are or have recently been sick, and I couldn’t help but virtually start my count-down clock for when I’ll soon be sick. Then I thought, ‘Well, at least this is towards the end of my trip; I’ll have time to get a lot of rest at home now that my surgery is pushed back.’ Then it hit me - like a ton of shoulda-thought-of-that-before bricks. Remember last July when I was in the hospital and got the ‘horrible’ news that my laparoscopy had been cancelled due to my hospitalization? I was so crushed ... until I met with my surgeon a month later and found out that it was a good thing that it was cancelled! I didn’t see it coming, but God knew all along exactly what I needed and orchestrated things to work out perfectly! So, it wasn’t until this morning that I put all the pieces together. Whether or not I actually get sick from this trip, I *know* I will need time to recover from this trip. I kept thinking, and then one neuron met another (seemingly unrelated) neuron. The I-need-time-to-recover neuron met up with the my-surgery’s-been-rescheduled neuron, and they tied a bow together around the God-ALWAYS-knows-what-I-need neuron!! 

So I guess what I am saying is that even when things frustrate me, confuse me, and set me back, I should just go ahead and tell God “Thank You” - because I know that one way or another, visible short term or in the long run, He really IS working all things together for my good, because I love Him. That’s His promise .... yet how quickly I think my current circumstances must be exempt from that rule. Silly silly silly me. Satan may win a round here or there with me, but since I have the strength of Christ on my side, I know he will not win this war!!!

Rewind #29: Counting Down, Spoons, and Dreams

Original air date: 16Oct2010

Well, here we are - 16 days into our dream road trip! We are having SO much fun, and I have to say (since I’m not superstitious) that we haven’t had a single bump, issue, or setback. It’s truly been a blessed trip. The scenery across America in the heart of autumn has just been amazing, and I wouldn’t trade my company for the trip for anything. Danny and I have giggled our heads off, had big deep serious conversations, and just chatted away a few thousand miles. And even though we have XM radio, a bunch of cd’s, and several books with us, most all of our time has been spent just soaking up the conversation of a couple best friends. I am so blessed with my partner. I may not have done a lot of things well in my life, but one thing I *can* say is that I married well. :)

The one thing about the trip that’s really surprised me, though, is how many ‘spoons’ it requires to sit it a car all day. Even when we don’t have a schedule to keep, I can nap throughout the day, and there’s not a stressor to be found, I have still been strangely low on spoons! I knew I wasn’t going to have an overabundance of them, but I’ve been surprised by how many this trip has taken.  For so many reasons I am looking forward to my surgery in November -- but I have to admit there’s still quite a nervousness in me! I am still doing research, even at this point. I am reading a book (out loud while we drive, so that Danny is reading it with me,) on “What every woman needs to know” about a hysterectomy and ovary removal. There is a lot in there I didn’t know! I am sending out an email to all the women I know that have had this surgery (that have said they wouldn’t mind answering some questions) to get an informal “poll” back. Some questions will be specific, and others will be general. Hopefully it will help me get somewhat of a feel for these topics. I will admit something that is rearing its “ugly” head .... all of those issues I talk about a long time ago - I think when I was on the Lupron and contemplating this surgery - related to the emotional impact of this surgery. Things like: being less of a woman, having the option taken away of ever getting pregnant (and as those who know me would know, the decision to not bear children was made long before this surgery, or even these diseases, came about.) Yet these are all reeling around my head a mile a minute! For some reason the term “eunuch” keeps going through my head. I have had more dreams in the last 2 weeks about being pregnant than ever before in my life -- dreams that are happy & good (like being pregnant at the same time as a good friend and sharing the experience,) and dreams that are scary or sad (like having the surgeon find out midway through the surgery that I was actually pregnant, but it was too late because things were already severed.) Ahh! I really could use the help of my subconscious here. It doesn’t need to be messing with my head at this point. (Interestingly, from reading online I have found that these exact same dreams are pretty common among women facing this surgery -- especially the one about finding out mid-surgery that you were pregnant. I guess that’s why they do a pregnancy test during your pre-op.)

So, here I am - back where I was so many months ago: trying to bridge that gap between head and heart. Why can we intellectually know something that is so difficult to incorporate into our hearts? Another thing that is basically one of the major maker-breakers of the decision on the surgery is weighing the balance of (a) the benefits to moderate-to-major medical and quality-of-life issues now, with (b) the possible impact and consequences of major health and quality-of-life issues later. Just skimming off the top of that pond brings up issues of being 3 times more likely to develop coronary heart disease; 6 times more likely to develop congestive heart failure; and 8 times more likely to have a stroke. Isn’t that a lovely bedtime story?

I am so grateful for the wealth of information available at our fingertips with today’s technology, for living in a part of the world where I even have the possibility of major medical care like this, for the friends and family who support me through anything, for a husband who will walk through fire for & with me, and for the love and peace that transcends any medical condition or life situation that can only come from Christ. I am so thankful that the Lord held these health problems back until I was His child and had Him as a source of strength to draw from. 

“The Lord is near. Be anxious for nothing,
but in everything by prayer and supplication
with thanksgiving let your requests
be made known to God. And the peace of God,
which surpasses all comprehension,
will guard your hearts and your minds in Christ Jesus.”
Phil 4:5-7

Rewind #27: Ups & Downs

Original air date: 2Sept2010

Have you ever heard the phrase, “The only thing constant is change”? Isn’t that an annoying phrase? I think what’s so annoying about it is its truth. Well life goes on, things are changing and we’ve got a new game plan. As far as my health goes, I’ve had some ups and downs this summer, (kinda like that roller coaster behind me in the picture), and sometimes what we define as an “up” or a “down” is in the eye of the beholder. For example, during mid-July my husband and I were on a two-week trip to TN to visit his family and take part in a spiritual retreat --- it was a GREAT time. However (as it often does), my Behçet’s decided to use that time to come out in full force and thus it ended up earning me an early flight home and 10 days in the hospital. My doctors were all very concerned and immediately started talking about what new (& stronger) meds to put me on, whether to double or triple my current meds (they opted for triple), and how slowly to taper me off some of my flare meds (they opted for the “turtle-out-for-a-Sunday-drive” kind of slow). For a little while we all consoled each other about how terrible it was that it was happening, but then I really tried to look at the situation differently. With eyes of faith. For one, it had been 27 months since I was last hospitalized. That is a RECORD! My average is 8-10 months! Over two years between major flares has been unheard of for me. Second, of the 6 times I have been hospitalized, it was the second most moderate. Not bad, relatively speaking. More blessings about it include: the flare was timed perfectly so that I was able to spend a few days visiting with family and be part of the entire retreat before I had to fly home; God had blessed us with the means to be able to purchase that short-notice plane ticket; I had somewhat of a spiritual breakthrough during the flare that I was able to share with others; and hopefully now my Behçet’s will be fairly quiet so that I can focus on treating my Endo. The biggest thing I was upset about was that the laparoscopy I had *finally* been able to schedule had to be cancelled. It was too close to that major flare for safety’s sake. However, later when I met with my GYN surgeon, she said that it was actually a good thing that surgery was cancelled, since it wouldn’t have been the most beneficial thing for me. The game plan we’ve decided on now is that in late November I will have a complete hysterectomy, and while they are in there they will do what the laparoscopy would have done (look around and cut out and Endo they find.) So, it all worked out! In fact, had I *not* been hospitalized, I almost certainly would have had the lap, and not pursued the better alternative for my treatment. God knew what he was doing all along!!! Ahhhh, don’t I doubt too often??????

When it all boils down, isn’t that where my assumptions usually go? Here’s typical life: (a) I have my heart set on something; (b) something gets altered from how I thought it should go; (c) I assume it’s all ruined. Only LATER do I find out that it really was the best plan after all .... in this case I was blessed to be able to put the pieces together concretely within a matter of weeks, but how many times do I not have the vision of hindsight until months or even years later? And I spent all that time disappointed or doubting, thinking God must not have heard my prayers. At what point will my knee-jerk reaction be to look forward to how God is going to work His blessings in a way even better than I imagined?? I can easily say I’m still smack in the middle of THAT learning curve. 

Rewind #25: The Spoon Theory

Original air date: 2Jul2010

How do you explain what it’s like to be chronically ill or disabled to someone who has always been healthy? Is it possible to put your shoes on someone else, even for a mile? I have recently found the best explanation I’ve ever seen for describing chronic disease to someone who is healthy on a website called ButYouDontLookSick.com . The following is what Christine Miserandino has called “The Spoon Theory”. It can be found in its original location by following this link, but I have also included the text below. After printing this article out and giving it to one friend of mine with Lupus, she has already copied it out multiple times and begun distributing it to all of her friends & family. Another friend of mine (who received one of those copies) read it as part of his ToastMaster’s presentation. I believe this is simply profound -- but please let me know what you think.

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My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
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Rewind #24: Courage

Original air date: 27Apr2010

I have to admit it’s kinda been a tough day. I think I am hormonal, I’m tired, I don’t feel good, and I’m getting really frustrated with my health. I was watching an episode of House the other night and a man who was chronically ill and disabled was diagnosed with a terminal condition, and the doctors were weighing options with him of extending his life with medication, etc., but it clearly would not have been an extension in any quality of life. The man said, “I have been trapped inside this body for so many years now, and I’m just looking forward to getting out of it.” Wow can I relate! Whenever I start feeling down or “claustrophobic” inside this body, and I reminded of just how temporary this situation is. It’s kind of like being in college and having to buy a pretty junky car, just because you have to have *some* kind of transportation but you can’t afford anything nice. So waa-laa, the ‘college clunker’ enters the scene. Why are you able to laugh off a car that you have to enter through the passenger’s door because the driver’s side door was from another car and therefore used a different key - one that you didn’t have? (True story in college there.) Because you know it’s not your ‘forever car’ - it’s just something to get you through right now. Sometimes when we are given something that is too nice, something that someone else worked for and that we ourselves didn’t do anything to earn, how much do we appreciate it? Don’t we take it for granted? Sometimes I feel like the same is true for our bodies. If everything worked just great and never deteriorated, where would the longing be for our heavenly dwelling? A body not made of the dust of the earth? Is that maybe why the young (and healthy) typically take their health and life for granted, but as we age we learn just how mortal and fallible we are? I think that has a lot to do with why the elderly have more longing for that final day -- and personally I’m quite excited about that day. Nobody better be grieving over me! I will be dancing on the streets of gold!

What I do most often when I really start getting down about health and issues of this life is I turn to scripture. God has given us every measure of comfort and hope that we could possibly need! Just this morning I was reading in 2 Corinthians 1: “Praise be to God ... who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” (vs 4) Quite simply, we are comforted so that we may comfort! 

I would like to include some of the scriptures I have found over the last few years that have been an amazing source of encouragement to me, even on the toughest days. Do you ever find yourself getting discouraged in the same ways? Do you know someone else that struggles with health or aging? I pray that these are also a source of comfort to you.

One of the first places I go in scripture is to 2 Corinthians 12, where the apostle Paul talks about the way he struggles with his illness - what he calls the “thorn in his flesh.” Here are verses 7-12:
“Because of the surpassing greatness of the revelations, for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me - to keep me from exalting myself! Concerning this I implored the Lord three times that it might leave me. And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will boast about my weaknesses, so that the power of God may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”
Amen! Wow. Every time I read this it practically gives me goosebumps. Paul sums the physical fight up so well - it is definitely a ‘messenger from Satan’ meant to keep us from becoming arrogant. When I think about some of the crazy ways my body can misbehave, I can sure tell you it’s really hard to have much pride at certain times!! 

2 Cor 4:7-9
“But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard-pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”

2 Cor 4:16-5:10
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal.

Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed with our heavenly dwelling, because when we are clothed, *1 we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, *2 guaranteeing what is to come. Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith and not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. So we make it our goal to please Him, whether we are at home in the body or away from it. For we must all appear before the judgment seat of Christ, that each one may receive what is due him for the things done while in the body, whether good or bad.”

<<I just love cross-referencing the Bible! It really brings to light how perfect the Word is, and how is must be written by the hand of God. *1 Also see Galatians 3:26-27: “For you are all sons of God through faith in Christ Jesus, for all of you who were baptized into Christ have clothed yourselves with Christ.” And also *2 see Acts 5:32, “we are witnesses of these things, and so is the Holy Spirit, whom God has given to those who obey Him.” Acts 2:38, “Repent and be baptized, every one of you, in the name of Christ Jesus for the forgiveness of your sins, and you will receive the gift of the Holy Spirit.” Isn’t this *great* stuff?! I just love how it all comes together!>>

As far as me feeling overwhelmed and like I’ve been given more than I can handle, I often find comfort in: “No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide a way of escape also, so that you will be able to endure it.” (1Cor 10:13) So what is that ‘way of escape’? Paul explains this: “For we do not want you to be unaware, brethren, of our affliction which came to us in Asia, that we were burdened excessively, beyond our strength, so that we despaired even of life; indeed, we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead; who delivered us from so great a peril of death, and will deliver us, He on whom we have set our hope.” (2 Cor 1:8-10) So, our way of escape is to put our hope and trust in the Lord! Makes sense to me -- and when I can fully do it, it works every time.

OK, ok, ok ... so I could go on all day with uplifting things from God’s Word! In fact, just in typing all of this out for the benefit of my reader, I myself already feel worlds better. Do you? And do you have any other verses that help you in this kind of time? We all get there from time to time, and it’s up to us to choose either constructive ways to deal with life’s trials or deconstructive ways, which only heap trouble on top of trouble. (Trust me, I tried that route for many years, and it’s just not as productive as it sounds.) :-P 

The final quote that I will share with you is not from the Bible (even though I believe the principle is solidly biblical,) but it was a quote I recently saw on a friend’s Facebook page:

“Courage does not always come with a roar. Sometimes it is a quiet voice at the end of the day saying, ‘I will try again tomorrow.’”

Amen!

Rewind #23: More than Half Full

Original air date: 18Apr2010

Someday girl this ol’ world will try to beat you up,
Well let ‘em bring it on, cuz every time we touch
Life is good, the grass is green,
The good Lord’s smilin’ on you and me
.... Sweet sunshine everywhere I look
You love me like no one could -
Life is good!

Well, that just about sums it up! This blog entry was brought to you by Kenny Chesney. The End.

Just kidding - I know you want WAY more information than that - otherwise why would you be reading this?? (I say that like I even have a clue who’s reading this!) :-P Anyway, as usual, things have been busy and chaotic around here - but such is life!! Danny had surgery on his shoulder day before yesterday, and he’s doing pretty well. So far he’s only woken up in a lot of pain once, and that was because we both slept about 2 hours past his next pain pill dose. Once that had kicked in he was doing alright again - and as long as he’s cozied in to his little spot on the couch, he says he really doesn’t feel much pain. I am very thankful that they were able to repair everything going on in his shoulder without having to go into his rotator cuff - once they have to repair that, the recovery becomes considerably longer and more intensive. As it is, he should be back to himself within a few months - yay! I just can’t wait for him to be in less pain.

So what’s been going on with my health saga lately? Well, there’s news on many fronts. I *finally* got to go in for my appt with my new GYN at UCDavis - I had a lot of anxiety and eagerness about the appt. The clinic sent me a bunch of paperwork to fill out ahead of time and bring with me - but as I started going through the papers, I got reeeeeally nervous. It was ALL related to fertility!!! In fact, I found out the the clinic was called the FERTILITY clinic!! Yikes! I got very nervous and vowed not to take a single medicine or treatment or even drink from their water fountain until I knew well and good what it was for. I started to doubt that I was really being send to the correct clinic, so I called in. I told the lady that answered the phone that I wanted to check to make sure I was going to the right place - saying that I was ONLY coming in to be treated for Endometriosis, and it was NOT related to fertility, not now not ever. She said “oh yes, he treats that, come on in - you’re in the right place.” Okaaaaay. (I was still hesitant.) I was a little nervous in the waiting room, surrounded by all the pregnant people (evidently they are a successful clinic.) I mean, I know they know what causes that “condition” in women now, but just in *case* they’ve missed a contagious factor, I made sure to stay sitting over by myself. ;-) So Danny and I went in to the appt, and it took a little while to get to the bottom line, but within about 20 minutes we figured out with the doctor’s help that we were in the wrong place. He said that yes, he treats Endo, but only inasmuch as it relates to resolving it in order to get pregnant. (Needless to say, the word “hysterectomy” is considered a VERY bad word there.) I became very disheartened and frustrated. It had taken me quite a while to get to that appt, and now I was having to start over with the referral and appt-making process. :( He referred me on to the Chronic Pelvic Pain Clinic (CPPC) for treatment - but two weeks later when the secretary finally called me, they said that there were no appts available until after June, so they could schedule me the first week of June for the resident’s clinic in the same place. I tried to explain to them that I am a complicated case - they have four diseases they have to take into consideration for my treatment (not exactly a straightforward, textbook case,) but they assured me the residents are overseen by the same attending physicians as in the CPPC. So, just to feel like I am making progress, I made an appt for the 8th of May, I think. Somewhere in there. 

On another front, I am taking a few steps forward on getting my cough figured out. The last news I had given on here (I think) was that they had gotten the results of my chest CT scan, where they saw “a certain kind of inflammation indicative of MAC disease.” So they sent me to a specialist in MAC, who I saw last week. They showed me my CT scan (that kind of stuff I just find *fascinating*!) and showed me the places that were not normal, and what was of concern to them. They would like to redo my bronchoscopy (my last one was last summer,) so we have scheduled that for April 29th, I believe. (Sometimes these appts all run together!) Also, on the 27th I go into my Dermatologist for a follow-up on my LS. It’s improved, but not gone away. :( 

And still in yet *other* health news, my body seems to be getting back on track since my Lupron shot last October. Things are returning to a normal schedule - but unfortunately that means that my monthly hand flares have also returned. This month I am having my first flare since October, and it seems to be making up for lost time! The hand spots have become full target lesions, many with tight blisters in the middle, making using my hands very difficult and painful. Hopefully that subsides soon. The good news is that it hasn’t shown up in my mouth yet though.

So -- other than all of the health news (which has been changing daily around here,) I have to say that life is going really well. The sun is shining, spring looks to be finally springing - with a beautiful cluster of yellow roses blooming out front! I have two big yellow rose bushes out front (and two more out back) that just go crazy this time of year. They’re so pretty! I finally got some flowers planted in the pots out in the entry way, which always brightens things up. Plus, I am in love with my husband more than I have ever been, he is in love with me, and we are optimistic about our future. I think this is going to be a *great* year - full of surgeries and health advancements, but I think that by this time next year both Danny and me will be in a better physical state. Plus we are both getting really excited about the travel plans we have! Yippee! *This* is what life is about! I have better relationships with my family, my friends, my church family than I have ever had. I have gotten thru a point in life where I have figured out the difference between a true friend and a fair-weather friend, and I have really come to appreciate the friendship of a true friend - and learned not to waste my time and energy with the other kind - and more importantly, it teaches me what kind of friend I always need to strive to be. With the Lord’s help, I will be the kind of friend that I desire to have. So, it’s not a matter of not having struggles or things to overcome in life, it’s always remaining grateful for all of the overflowing blessings in our lives. Do we focus on the things that we are struggling with, or do we insist on looking at them only in the proper perspective in relation to all of the overwhelming good? I can’t say I am able to pull this off *every* day of my life, but by and large I have to say that I try to make the choice to count my blessings, be thankful for the lessons I learn during my trials, and thank the Lord that He’s always with me no matter what I’m going through, and I trust His promise that He will never give me more than I can handle. Life is good.

Life is good, the grass is green,
The good Lord’s smilin’ on you and me ....
Life is good!

Rewind #21: Life, and Stuff

Original air date: 29Mar2010

Well good morning! It’s been a while, hasn’t it? It’s unfortunate because there’s been all kinds of things going on that I would have liked to have written about - but life has just been too busy to allow for blogging. (Somewhere in the middle would be nice!) Our most recent adventure was a couple days spent at a little bed & breakfast on the coast up near Ft Bragg, CA (that’s where the flower pics came from - the garden out front of the house at the B&B.) It was a really nice getaway ... right up until the moment I got knocked underwater by a rogue wave -- with my iPhone in my pocket. :( Needless to say, please don’t be sending me any texts anytime soon - I won’t be getting them. So *anyway* - on to cheerier topics! I am thankful and excited to be able to report that I have been feeling much better recently! My worst round of bronchitis ever has finally receded and I back to nearly business as usual. (I wish my poor hubby could kick his cough once and for all though.) I actually went three weeks without any pelvic pain last month -- which is *quite* the record for me in the last many many months (like a year or better.) It’s come back now - in fact, that’s the reason I’m writing this at such a wee hour, I was up and saw every hour on the hour last night, tossing and turning due to a symphony being played by GI cramping, “girl” cramping, and my hips aching. Since I was just laying there staring at the ceiling since about 4:30am, and I had already had a good long conversation with God (those quiet hours of the night are sure great for that,) I figured I may as well get up and get a cup of coffee in me before I meet my friend LaDona here in about 15 minutes to (re-)start our morning walking again. Ahhh, wouldn’t it be nice if Jack had to be at work at 10 -- then we wouldn’t have to go out so early! ;)

So while Danny and I were enjoying the beautiful scenery of the drive and the great company we had (at least that *I* had,) we were having our usual deep conversations about life. One of my favorite things about our relationship is how much sharing and talking and dreaming and analyzing and solving all of the world’s problems that we do. In fact, our whole dating experience is defined by the hours and hours and houuuuurs we spent talking! During the drive yesterday I asked myself a very interesting question, something I had never considered before. It’s one of those questions that really is hypothetical, since my answer one way or the other would change nothing, it’s just interesting to think about. Here’s the question: Do I think I got a “fair trade” for my life, from the life that I had planned on and worked towards and was in the process of living (basically, everything I considered “normal” back then - working as a goldsmith, being very physically active, really being quite healthy,) to what now defines my life? Would I say it was a “fair trade,” that I got the “short end of the stick,” or that I got “the better end of the deal?”  I considered the ‘cons’ of my life - the constantly being sick, seeing umpteen doctors regularly and taking umpteen medications daily, all the things I can’t do or end up having to cancel, being hospitalized 5 times in 5 years and facing all the new unknowns about the most recent additions to the disease repertoire ... with the pros of my life, first of all that I get to spend virtually all of my time with my best friend, we are able to focus our time and energy (what I do have) to first and foremost our work in the kingdom. I had to think about the answer a lot less than I thought I would have to. The simple answer is, although there are many very difficult aspects of my life, I really wouldn’t change a thing. I love my life and consider myself really having the better end of the deal. Although I never would have picked this course for my life, I am thankful for what God is doing in my life and the ways that He is shaping me. I have learned things and grown in ways I never could have during my “old life.” I know that my ways are not God’s ways, and that His plan is always better than I could imagine. Of course it doesn’t take me agreeing with Him to make that true, but embracing His plan with an open and moldable heart sure makes a difference in the quality of my life! So thinking about all of this actually led to me thanking God for my illnesses and my conditions this morning, because without them I would not be where I am at now. So many people look back and have regrets about their lives, but that is just somewhere my heart doesn’t go. I know that every terrible decision I made and every way that I jumbled up my life has been rolled together with every *right* decision I made and every way that I have grown to make me the person I am today. If I went back and changed any of that, I would change where I am at now - and that is nothing I am willing to consider. I can honestly say that I have never been truly happier ever before. I might have been more playful or joyful or giggly at times, but I have never had the true spiritual peace, comfort and contentment that I have now. As the apostle Paul said, “I have learned to be content in whatever circumstances I am ... I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me.” Phil 4:11-13

Anyway, it has been such a while since I updated this, so I just wanted to jump on here and say hello. Hope you all are doing well! God bless. ♡

Rewind #18: Right on the Money

Original air date: 18Feb2010

"She’s bulls-eye perfect, she’s right on the money ..." (Alan Jackson)

I dedicate this song to ....... me.

Now, before you become all appalled at my narcissism, give me a minute to explain. 

It’s sometimes a temptation to think that something is wrong with us if we don’t live up to some standard of perfection that is generally adopted by our society - but never ever reached. *No* one “has it all” - not even the people we put up on a pedestal for those measures of success. Sure, we look at the magazine rack and see all of those perfectly-sculpted human figures, and suddenly we feel crappy about ourselves. (Marketers of course like it that way, because then we’ll buy the “look better” product that model is selling that you know she has never once used.) But you know what? I have a simple fix for that entire epidemic of low self-esteem in America. One company came *close* to a fix, but weren’t quite thorough enough. I believe that in the 7th grade EVERY child should have their portrait taken by a professional photographer and then be given a 2-day course in Adobe Photoshop. With entry-level proficiency at the most basic Photoshop techniques, I think every child should be given the raw picture file that was taken, and within 3 hours they will be able to transform that picture into something that looks remarkably like the cover of that magazine. One of the most self-esteem boosting moves I ever did was learn Photoshop. Guess what? I really CAN have perfect skin!! I really can have a longer neck, less there, more there, and perfectly white teeth. I think this exercise should be repeated about every 10 years throughout our lives, just to remind ourselves how much of the standard of perfection in America is nothing but smoke and mirrors.  But I have digressed.

In my particular case, it could be easy (and at times it *has* been easy) to think of my health issues and determine that something about me is broken, wrong, or less than perfect. It might be tempting to think that God made a mistake on me, or forgot about me altogether. But on the way home today I was listening to this song by Alan Jackson and was reminded of one simple truth: I am exactly how God made me at this moment. As a friend once reminded me, God was not surprised when biopsy or blood test results came back. God always knew this would happen to me -- and the fact that it IS happening is proof that this is all part of God’s will. 

Now I am not as bold as some who presume to know the mind of God, and so I cannot say that “God gave me” these conditions. But I can say they are in His will, since they are happening. I think of Job, who Satan inflicted with terrible hardships to test his faithfulness to the Lord. God did not directly give Job those trials, but He allowed them to happen because they served a bigger purpose. My faith says that on some level, that is what God is doing with me. God has created me exactly the way He wanted me to be. God has allowed everything that has come into my life, and I know He is powerful enough to use it ALL to work together for good for those that love Him .... and I love Him.

Rewind #17: Blessing the Broken Road

Original air date: 17Feb2010

Every long-lost dream
Led me to where you are.
Others who broke my heart,
They were like northern stars
Pointing me on my way
Into your loving arms.
This much I know is true:
That God blessed the broken road
That led me straight to you ....

"God Bless the Broken Road" --Rascal Flatts 

Just ask my husband - I cannot watch a movie without guessing a hundred times how the movie’s going to end. I am constantly saying things like, “Watch out behind that door! There’s a bad guy waiting!” or, “Ohh I don’t trust that guy. They’re only making us like him because he’s gonna turn out to be a terrorist.” or, “I’m tellin’ ya, this girl helped plant the bomb.” .... you know, stuff like that. (Did I just give away what kind of movies we watch most?? OK, so we watch WAY too much “24,” what’s your point?) ;-) I guess I’m kinda like Dr. House - I get enough of my guesses right that Danny threatens to not watch with me anymore ... but for each correct guess I have, I have 99 wrong guesses.

Ain’t that life?? I tell ya, I could never have guessed the path of my life. I would never have believed you if you came up to me 10 years ago and said simple truths from my life. I would never have believed that not only would I be a Christian, but I would have SUCH a fire for Christ that I would give anything to be able to share with any person that would listen for 5 minutes the unbelievable change that Christ has made in my life. I would have pointed to the little “Darwin fish” decal on my truck bumper back then and snidely said, “Yeah right.” If you would have told me that by the age of 25 I would have a college degree, two divorces, and a life-changing autoimmune disease that would force me to work my last day on the job less than two years later, I would have told you that you were off your rocker. I would also never have believed that one day I would have the kind of husband that makes me feel like I will NEVER be able to repay the love and the dedication that he shows to me on a daily basis, having stood with me through thick and thin, high and low - and that I would feel humbled nearly every time I looked at him. I wouldn’t have believed that I would find and marry a man of such worth.

Believe me, before I was a Christian I looked for love in all the wrong places - and not surprisingly, I found the fish native to the ponds in which I was trolling. It took changing the fishing pond, the bait and the standards for what was a keeper and what was strictly catch-n-release before I found the man that is the catch of a lifetime. Danny and I have never hidden that we have had our ups and downs since we were married in January of 2005, but I can say easily that we have never been stronger than we are now. God has blessed me beyond measure with my husband, and I am humbled and inspired by the kind of agape-love he shows for me. 

Both Danny and I admit that we each came into this marriage with no small amount of baggage. I like to think I simply had a carry-on while he was hauling his Air Force duffel bag, (which is NO small bag) ... but I know that’s simply not true. I practically had to have a bellhop follow me around the first years of our marriage just to make sure I wouldn’t lose track of any of my baggage. Well, item by item and prayer by prayer, Danny and I continue to set down that baggage and determine together never to pick it back up again. As painful as creating that baggage was, I *know* that it was exactly those experiences that built Danny and me into the people we are today. Without those experiences, we wouldn’t have the depth of relationship we have today. As this song truly says, I wholeheartedly believe that every thing along my broken road was leading me and preparing me for Danny -- and so wishing away any part of my past would wish away my present.

So here’s the real sticking point to that train of thought -- if I say that I trust that the Lord was always looking out for me, preparing me and discipling me for the blessings of my life now, knowing that without those difficult experiences I would not be the person I am today .... then wouldn’t the same hold true for my present and my future? Isn’t the God I serve today the same God that loved me back then, even before I loved Him? Why would I ever think, then, that my current trials aren’t all the more preparation for blessings I can not imagine and would not believe anyway awaiting me in my future?? I desire a faith that not only looks back and gives thanks, but one that looks forward and trusts.

Now I’m just rolling home, into my lover’s arms ....

This much I know is true, that God blessed the broken road that led me straight to you

Rewind#3: While I am Waiting

Original air date: 26Jan10

(Blogger’s note: don’t worry, dear reader - not all the posts on this little blog will be this long!  But when I’m trying to explain probably the second most profound revelation to my heart and soul in my adult life, it’s not going to be a quick note. So grab a cup of coffee, get in a comfy chair, and read on!)

Recently, I have been humbled. I have been brought to my spiritual knees and things became clear in my heart that have been struggling to find the surface for YEARS. This revelation has only been rivaled by my initial conviction to turn my life to Christ - almost 7 years ago! But I certainly don’t credit myself for this big breakthrough. I know in my heart of hearts that the Lord has been working diligently on me -- He has been using the people in my life to talk to me, He has used years of frustration and a general feeling of being lost & spinning hopelessly to get my attention, and He has used pain, sorrow and heartache to bring my heart to a point where I would truly listen to Him with my whole soul. I have known that God is bigger than any situation in my life, and that He is powerful enough to use all of these things together for what is good. This requires a “big picture” point of view! It is WAY too human and easy for us to only be able to see a day behind and a day in front of us. All we can see is the hurt we feel RIGHT NOW. We don’t see the blessings that come from what I will learn and grow in and mature by going through this. We just feel our pillow, wet with tears. We feel our fingernails digging into our own skin, the sinking of despair in our hearts. It takes the faith of a saint at THAT moment to know that God will use THAT moment for what is good. The Holy Spirit tells us: “And we know that God causes all things to work together for good to those who love God, to those who are called according to {His} purpose.” (Rom 8:28) - and now my soul is accepting that, beyond just my intellect believing it.

So what WAS this big breakthrough? What was powerful enough to shake the very core of all my thought processes and up-end and re-align my emotions? The shortest way I can explain it is by saying it’s putting my faith where my head is. I have always thought when I should have trusted. I worried when I should have trusted. I made my own plans, blazed my own trail, and then later asked God to bless me along the way. We all say the words and quasi-intellectually know that we can’t control the circumstances of our lives .... but then when our lives are changed by things outside of our control, we are TOTALLY lost and confused and mad!! Or, at least that described me. I have been living my life working towards the goals that I have set for myself - which, in and of themselves were not sinful goals or anything wrong - I had graduated from college with a degree in Metal, I had been working as a goldsmith, which was a job I just loved! I LOVED taking raw metal and having a vision of what it could become, and through the process of many cuts, burns, and laser welds on my skin, that hunk of metal would eventually turn into a beautiful piece of jewelry. Call me crazy, but I love the callouses on my hands and the permanent black fingernails from the polishing compound (although I quickly learned that people who make their own meth have hands that look the same, and therefore I was hit up for drugs more than once.) But at the ripe ol’ age of 25, my world was changed when Behcet’s Disease (BD) began manifesting in my body. Two years later I took some time off work to heal from a flare, (which had become my pattern by that point) -- but what I couldn’t have seen coming was that I would never go back. I would never sit at that bench again. Where I hung my torch that day is where it would remain. Whatever joints I hadn’t soldered or stones I hadn’t quite finished setting yet would never be done. Even right now as I write this, that is incredibly hard for me to say, and gets me a little teary. Right now I type this with clean hands, long nails, and a girly manicure. Not that I don’t like those things, but if I had to pick one or the other, *I* would have picked the nasty jeweler’s manicure in a heartbeat! But God had other plans for me, which are being revealed to me one painfully slow day at a time. That’s not the way I like it. (Which is weird, because I really am QUITE a spontaneous person ... in fact, too much routine will drive me nuts faster than most other things. But when it comes to my life, evidently I like to know what I’m getting into.)

So where am I going with all this? (If you know me at all, you already know that I am easily distracted by shiny objects and funny stories, so me getting off on tangents will NOT be a stranger to this blog.) :-P 

The last year of my life has been one of the most difficult years of my life. There haven’t been any big new developments (well, other than the addition of a new disease. I guess that counts as “major,") yet my mind has been in a constant struggle to accept my “new life.” I have heard that we can never go back to our old normal, but must create a “new normal.” That is especially difficult if you didn’t have anything against your old normal! My faith is strong and by far the most important thing in my life, so why was I so devastated about the changes in my life?? I have always considered myself an optimist, so it was really bothering me how negative the majority of my thoughts were. I had always wanted to be the kind of person that took everything in stride ... the kind of person who, when their left arm was cut off in some tragic farm equipment accident, could simply smile and say, “My wedding ring fit better on my other hand anyway,” and never think another thing about it. Then I’d travel the country speaking to other farm equipment victims and motivate them to be in the one-handed Olympics. But the reality was that I was having a tough time!! And I didn’t want to be having a tough time, so it made it even worse. If you had ever asked me, I would have said that what a person DOES for a living is NOT what that person IS. “A job title does not an identity make.” Yet in practice, now that I didn’t have a job title or a career, I was feeling totally lost and without an identity. So here I am, 31, without a career and without little kids runnin’ around the house ... so what did that make me? Without a career and without a family, what did I DO?? Who was I? I was struggling very much to feel intrinsic worth as a person, without making a tangible contribution to society in the work force. But I have never looked at anyone I’ve known that does not work (or is not raising a family) as if they were any less of a person because of it, but I was overwhelmed with those feelings for myself. Quite the double standard! 

Through a lot of conversations with people, through soul-searching and prayer and asking for prayers, and just by keeping my antennae up for direction from the Lord - it all revealed amazing things! I think it all came to a head and gelled together while listening to a sermon by Dane Bengard in Chester a couple weeks ago. The basic point of the sermon was yielding yourself and allowing the Spirit to work in your life, and not only asking for God to guide your life but also making yourself available to be guided daily. This was revolutionary! --even though I had known that intellectually for quite a while. The book of James talks about when we make plans for our lives, we should always say, “If the Lord wills we will do this or that.” But does our heart say that too? The litmus test is how we react when our plans don’t come through. I was failing that test miserably! I was devastated, pouting, hurt, angry, and unsure of where to go or who I was. As if God had been waiting for my agenda to move forward, and if He didn’t have MY plan to go by He’d just be at a loss for what to do next. I suddenly realized that I had never lifted my plans up to the Lord and asked if it was His will that I do the things I was planning!! It all came home when I realized (not for the first time in my brain, but the first time in my heart,) that I serve a God who does NOT simply close doors and leave us scratching our heads. If God is closing a door in my life, it is because He has another door opening for me. 

I have no idea what that door is. I don’t know what’s on the other side. I have no idea what I’m going to find when I walk through it. But I know one thing is for certain - GOD is on the other side of that door, and Christ is there waiting to walk with me every step of the way. Why do I need to worry about where the path leads, when I have Christ at my side? So I am waiting. I know that my old plan is not the way God is leading me, but I don’t know yet the form of the new plan. But while I am waiting I will be hopeful, and I will be peaceful, and I will continue to worship the God of my every tomorrow.