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 #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 #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 #26: Gettin' Back in the Saddle

Original air date: 29Jul2010

Well good morning everyone! Wow, it has sure been a long time since I have been active on this blog. I have many things rumbling around inside my brain and hopefully I will be organizing them into some kind of logical mess that you can read through soon. So much has happened here lately! Danny and I were *greatly* blessed to go to Tennessee mid-July and be part of a retreat with Christians from all over the country ... our eyes were opened, our hearts refreshed, and our lives challenged. We met some amazing new friends and no doubt have started lasting relationships. God has definitely been working in our hearts and we feel a fire to serve Him maybe more than ever. 

Danny and I have also been just enjoying the summer - (so much more temperate than usual! I can’t believe it’s almost August and yet the high is 93º today!) - we’ve been camping a couple times and are just having a good time. We have some travel plans coming up for this fall that are still being worked out .... not sure how much of what we had originally planned we will still be able to do at this point, but we’re playing it by ear ... I am helping to plan a Christian women’s retreat coming up mid-September that I am really excited about - the title is “Interior Design - Redecorating God’s Home In Our Hearts” .... and then of course aside from all of this fun stuff we have going, I have been facing some turbulence in my health. I was just released on Tuesday after spending 10 days in the hospital due to a flare of my Behçet’s Disease. Since the disease manifested for me in 2004 I have been hospitalized 6 times for similar flares - but I can happily report that of those 6 times, this was one of the 2 most moderate. It was by FAR my longest stretch between hospitalizations -- 27 months!!! -- and I am very thankful for that. Now that I am dealing with “cleaning up” after this flare (with the new pulse of medications & treatments, etc), the plans for proceeding with surgery and treatment of my Endometriosis have now been quite postponed. The surgery that I had *finally* been able to schedule for August 10th has been cancelled, and it is now looking like the beginning of this next year before we can move on with that.

Ahhh ... like I said, so much has been going on! In the midst of all of this, God is continually teaching me. He faithfully brings me lessons and opportunities for growing and maturing in my walk with Him and I have been trying very hard to be in tune with these lessons. I believe I have had small successes and even some larger breakthroughs - and I am excited to share much of this with you. Stay tuned, because more entries will be coming in the near future! I pray you are all having a wonderful day. God bless!

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 #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 #20: My New Template

Original air date: 23Feb2010

I was just writing an email to a good friend, catching her up on what’s been new in my life recently. While writing her I thought of something that would be pretty handy to keep on hand ... it’s an email template to help explain whatever new health development I have going:

"Hi, it's Karyn. I just wanted to update you on what's been going on for me & my health. Lately I've been having a weird occurrence of _______ that is ______ painful. It happens about ______ per (circle one:) day - week - month. My doctors performed a ______ test and just got the results back. Looks like it's a rare case of _________, that almost NEVER happens in caucasian women of my age. Once again, my doctors have never seen this except in medical textbooks. The treatment is to (circle all that apply:)
-take an exorbitant amount of expensive medication for life, then deal with side effects
-use a cream that stings like mad-eat a stew made of eye of newt & toadstool once a week
-or: there is no known treatment. 


The good news is that we now have a name for this condition (that no one will be able to pronounce), even though we can treat it but not prevent it or cure it.

How have you been?"

Hahaha ... I guess I have to be able to laugh about all this! It helps keep me sane. :)

Rewind #19: Living with Urgency

Original air date: 20Feb2010

... and no, I’m not talking about the bladder-kind of urgency. ;-)

This blog has been a place for me to mull over some of the struggles and trials I have been facing lately due to my health issues, and it has been a very beneficial outlet for me. I also think that this would be an appropriate forum for me to talk about some of the unique blessings that have come from those very same struggles.

First of all, let me start by saying I don’t think I’m dying. Don’t be alarmed by the song ... but I *do* think it’s an important analogy. I may not necessarily live each day “like I was dying,” but my mindset does adapt to appreciate the fact that I have no guarantee how healthy I will be in the future. Recently this line of thinking was sparked by reading one of my newest friend’s blog, and she wrote an entry about “Always Being Prepared.” It really hit the nail on the head as she talked about how having a disease like BD [she’s in the process of being diagnosed, which unfortunately is not a quick process,] can really change your perception of control. In a regular ol’ life, we have the illusion of control in just about every aspect of life. This was especially magnified before I was a Christian - before I understood just how truly fleeting life is. In our society, it is so easy to develop an “invincible” attitude ... which is especially contagious among the young, the healthy, and the financially stable. We tend to take for granted that because the average life span in the US is 78 (as of 2007,) that means we are guaranteed those 78 years. When people in their 40’s have emotional issues, what do we call it? A “mid-life crisis.” Well who says that 45 is your half-way point?? Isn’t that awfully presumptuous? We act like if only we eat salad often enough and are at least moderately physically active, then we are in control of our bodies and our health. And we can’t forget the illusion of having enough equity in your home, diversified stocks, and so-many months income put back in savings means we cannot be financially devastated. Well, I hate to say it but there is a poor joke saying that my high school wasn’t going to be able to have a 10-year reunion because there weren’t going to be enough people left to attend it, since tragedy after tragedy has claimed the lives of countless people I graduated with ... I am just one example of someone just cruisin’ along, fine and pretty healthy, and then out of the blue a disease comes along that turns my life upside-down ... and ask victims of things like Hurricane Katrina or the recent economy dive how secure their financial lives really were. The point is, nothing is really secure and anything & everything can be swept away in a moment’s notice. We can all intellectually acknowledge that, but I believe that it’s not until YOU get a personal taste of it in your life that it truly changes you forever. Survivors of cancer know what it’s like to have no guarantee of tomorrow and be forced to make peace with their mortality. Even with just a condition like mine, I acknowledge that I may never be healthier than I am today for the rest of my life. I have no guarantee of remission or of a treatment that is successful at managing things. So what do I do with that? I can either get depressed, which is certainly a temptation, or I can use that outlook to truly seize every moment in life as if it will never happen twice. It’s not necessarily about living impulsively ... I am not advocating a “do anything, regardless of the consequences” mindset, but I *am* advocating an outlook that says: If you ever have the opportunity to do something you’ve always wanted to do, TAKE IT, because that chance may never happen again. That is why I chose this picture of my mom (on the left) -- I absolutely love this picture! It might be one of my favorite pictures I’ve ever had of my mom! She has had health struggle after struggle (that make mine look like I’m dealing with the common cold,) yet she and my dad seized the opportunity to spend a month in Brazil with some new friends recently. They had SUCH a great time and made memories that I know will last the rest of their lives! They knew that the stress and demands of such an ambitious trip would most likely take a toll on her, but they also knew that another opportunity to go on a trip like this might never happen again. How great!! I thank God that they were able to take that trip and had so much fun while there. ((Maybe sometime we can go down there with them!))

Another benefit of “living like you are dying” is help prioritizing your life. We’ve probably all played the “What if?” game and asked ourselves, If I had one year left to live ... or 6 months ... or one month ... or 24 hours ... left to live, how would I spend that time? How would I change my life? One of the biggest ways that this has affected me has been in what I say and what I leave unsaid. I am trying not to assume that my family and friends know how I feel about them - I would rather say something to them from my heart that they already know than take the risk that it had never been said. I still have a long ways to go on this, but I am trying to get better and better about this. 

But to me, the ultimate benefit of all of these struggles and trials and wins and losses associated with my health has been twofold: (1) I know that I have grown spiritually in ways and amounts that I could NEVER have done without facing these things. I have chosen to allow this to draw me closer to the Lord, and He will always reward that. I do not believe that because I have chosen to put my faith and trust in the Lord means that I will get out of trials (in fact, we are promised the opposite ...), but I believe that means God will help me during anything I have to face. What’s the saying? --loving God doesn’t get me out of struggles, but it gets me through them. And (2) I believe that having faced these things in my life has better equipped me to be able to relate to and help others that are struggling, and to help share with them the love of Christ. Have you ever been really down and had someone try to encourage you that you knew had never ever experienced anything close to what you were going through? You appreciate their love and effort, but when push really comes to shove, we want to talk with someone that has tasted our struggle ... and hopefully come through on the other side with shining colors. I am striving to be that person, that can say “I’ve walked through the valley of the shadow of death/pain/heartache and tears, and the Lord has made me to lay down beside cool waters in my soul, and with God as my shepherd I shall not want ...... and He will do the same for you.”

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 #16: Birth Control: The Ends Justify the Means??

Original air date: 16Feb2010

I feel compelled to write on this topic for many reasons. Some of the information in this post I have known as long as I can remember (or at least since Health class in high school,) other parts for just a couple years, and some of it is brand-spanking new to me. I think it is especially because of that last part -- the part that is NOT well-advertised, yet I believe EVERY woman should know -- that I write this.

Before I start, I’d like to throw  out a few questions. Some of them might be simple and quick for you to answer, others are pretty deep. All the answers, though, will have a bearing on what you feel about what I am about to write, so please bear with me.

• Are you pro-life or pro-abortion?
• Do you believe in taking the birth control pill (BCP)? What about the “morning-after” pill?
• When do you believe life begins? At conception? Implantation? Birth?
• Do you believe the Christian’s body is a temple of the Holy Spirit? (To back up a step, do you believe in Jehovah God? That there are things that are right and things that are wrong - and rewards/consequences for our choices?)
• Do you believe we are responsible for what we put into our bodies? That we will be called to answer for how we treated ourselves - what kind of steward we were?

As you probably know by now, my life has been a health roller coaster for the last 5½ years, facing Behçet’s Disease, Endometriosis, and more. I have been given medicines and treatments that are relatively safe and mannny years old, and others that are not proven, that are very risky, and are simply on a trial-and-error basis. At the height of my diagnostic quest, I once had to take 56 pills every day (and yeah, they were the prescribed, medication kind.) ;-) I have had to sign off and accept some pretty terrible side effects - everything from indigestion to mood swings to knowing that I have a higher rate of developing malignancies, due to the immunosuppressants I am on. My husband and I have had to weigh the benefits with the risks and decide on a course of treatment -- which many times simply felt like choosing the lesser of two evils (one of those decisions I am weighing right now, actually.) 

But one thing no doctor ever advised me about or asked for my consent for was related to being made aware that the medicine I was about to take would mean that if I ever conceived, my body would prevent a pregnancy, since my body would forcible flush it out. All I was told is this was the safest and most common form of birth control. 

Let me pause for a moment. I believe that within the medical practice, doctors have a certain responsibility for making the patient aware of a reasonable amount of risks and benefits of each treatment considered. Our society focuses, in fact, on the responsibility the “other person” bears. But how much do we stress our own responsibility for our own education? Especially now, living in such an information age, do we have any excuse for ignorance? For years I simply took a doctor at their word that such-and-such-a med would help me, never considering for a moment HOW that treatment worked inside my body or the long-term effects of such a treatment -- let alone any spiritual consequences such a choice might merit. It has only been recently that I have really focused on HOW certain treatments work inside the body, and I have been alternately fascinated and appalled at what I have learned. I have also become convinced that even if we remain ignorant to such inner-workings, we are not avoiding our responsibility in the matter. The Bible says that at one time God overlooked ignorance, but now He is calling ALL men to repentance. He also says that His people are destroyed because of their lack of knowledge. Note that it never says, “God understood why they made the wrong choice and forgave them, because they didn’t know any better and their heart was in the right place.” The Bible says repeatedly that we must come to God according to the truth of His Word. Now, both of those quotes are directly related to people’s ignorance of God’s Word and commands, but I believe it has a broader application also. I believe it means that just because we didn’t know about harm we were causing, that doesn’t mean we are absolved of responsibility. 

I would dare say that the majority of the people who read the beginning questions answered in the following way: “I am pro-life. Yes, I believe the BCP is a responsible choice for a married couple’s family planning - but no, I do not believe in the “morning-after” pill. (In fact, that is horrendous to even think about.) Life begins at conception, we are the temple ... and yes, we are responsible for our choices.”  How close did I come?? I can understand that point of view, because up until very recently I would have answered the exact same way. It’s a majority view (at least among Christians) but much of it even the world agrees with -- did you know that 54% of  all women are pro-life (with the largest pro-life group, other than elderly, being 18-24 yr-olds?) and as many as 100 million women worldwide use the BCP?

I approved of the BCP, even taking it myself for years -- until I learned how the pill really works. It’s not simply a “conception blocker,” as your average clinic doctor leads you believe ... it truly prevents births, but NOT pregnancies. See this website for more in-depth information: http://www.prolife.com/BIRTHCNT.html and I believe you will be very surprised. Not to get all “9th grade Health class” on you, but here’s a video on YouTube that explains it very well: http://www.youtube.com/watch?v=lhZOBqdlE5M . Very simply put, the hormones in the BCP force your body to act as if no conception occurred, even if conception DID occur. That means that an egg could have been met by sperm, and without any interference you WOULD have had a baby, but the pill forces you to have a period, which expels the fertilized egg.

When I learned this, I was sick to my stomach. I maintain that there is only ONE difference between the BCP pill and the “morning-after” pill -- when you take it. I believe the BCP is simply the “morning before” pill, but they both have the same result. When we arm ourselves with true medical knowledge, I believe that to be pro-life yet pro-BCP is hypocritical. To be pro-BCP yet against the “morning-after” pill is hypocritical.  We must do research and find out HOW different medications work and alter our bodies before we consent to taking them. Personally, I have deep sorrow at the years I took the pill, even though I never planned on having children ... and I have asked the Lord’s forgiveness for my ignorant behavior. This, I believe, is only genuine if I take it seriously enough to (a) do better about making educated choices in the future, and (b) do everything I can to educate my sisters, knowing how easily misled we are my the advertising and profit-seeking behavior of the pharmaceutical companies. I am grateful that the Lord forgives us when we seek Him according to His truth, knowing that we will no longer continue to make the same mistakes. 

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.

Rewind#2: Name, Rank & Serial Number

(Original air date: 25Jan10) The basics. Some would call that the “who, what, when, where and how” of a situation. Other times it’s called the jist. Some people simply say it’s an introduction.

But you’re reading my blog. Surely you’re not a stranger to me, right? I guess this IS posted on the “world wide web” ... but some random web surfer in Russia is NOT my target audience. This is geared towards my family and my friends ... so why would I be introducing myself? There’s several reasons .... for one, I just feel it’s a good starting place for this blog ... but more so, I guess it’s because we often take for granted how much we really know about our friends. A little while ago a line of quizzes went around Facebook that people made about themselves, and were called, “How well do you know ____ [insert your name here]?” Each person would make 5 or maybe 10 trivia questions about themselves that they considered to be basic info ... so why were so many of the average scores by even close friends less than 50%? Because what we think of as “basic info” about ourselves really hardly ever comes up in casual conversation. How many of you know where I went to college? What about what my major was? My favorite pet? Some people might know this, but most of you probably don’t. So here goes .... what I consider the basic cliff notes of “ME” .... what someone in the military might understand as just my “name, rank and serial number” - (which is what a soldier is trained to say when captured.)

I was born September 24, 1978 in Reno, NV. I lived in that same house til I moved away to college ... my parents still live there. I graduated from Galena High School in Reno in '96, and from there I went on to graduate from Boise State University with a bachelor's in Metal and Ceramics. I worked for several years as a goldsmith, and loved every minute of it! Up til that point in my life, I had always been an atheist and lived truly for the moment. A year after graduating, I then lived in Atlanta, Georgia, and was in the middle of my second divorce. My life was crumbling, and everything in my life was up for re-evaluation. For the first time ever, I decided to look into all the “hype” about God and the Bible - which I had always denounced fiercely, yet never actually read. Once I opened the pages of the Word, my life immediately came into clear view and I realized what I needed to do. On March 16, 2003, I was baptized into Christ and began an entirely new life, raised as a new creature. Praise God! I was then (& still now) living in Yuba City, CA, where I worked as a goldsmith an had a nice little life with my own apartment and being very active with the church. Well, God had better plans for me, and soon introduced me to the man who is now my husband - Danny - a Master Sergeant in the Air Force - and we were married on Jan 8, 2005. Well, another big surprise was brewing, and soon I was diagnosed with Behcet's Disease. Within a couple short years I was forced to quit working due to my health struggles. (We never can plan our lives, can we??) Danny retired from the AF in early 2008, and started his own photography business - McNeal Photography.

Now we spend all of our time together, working our best for the Lord and simply enjoying life. My most recent "adventure" is having been diagnosed with Endometriosis, and so now we are pursuing the treatments for it. These are big decisions that are literally going to affect the rest of my life. Right now much of my focus is on trying to decide which way to go -- which are some big factors that aren’t easy to weigh ... but there will be much more on that in other posts, I’m sure. 

So, I guess that's me in a nutshell! Now you at least know the cliff notes. :)