Onward and Upward!

WHEW! Boy, am I glad to be done with that! I can now say that all of the entries that I wanted to transfer from my old blog site have now been successfully transferred. I do have to say that it was really interesting to go back through them and see what all was going on in my life over the last two years. Wow, has it ever been a time of change!! (Especially considering that most of the changes weren't covered in blog entries.) :-)

So, from here on out everything will be current events - no more looking back, let's look ahead! I expect that my entries here will be as random as the thoughts in my head, since the two are pretty connected. ;-) Who knows, I might post more crafty stuff, thoughts on faith, updates on life, and stuff like that. Whatever floats my little boat!! Hope you are well tonight!

Rewind #33: Getting Back In The Saddle (again)

Original air date: 21Jan2010

No big news. No big revelations. Just enjoying getting back in the swing of things - albeit slower than I might prefer - but I’m thankful for the recovery I am being given from my surgery. I am now 5½ weeks post-op, and doing well. Of COURSE I’d prefer to be spending more time away from the couch, but hey - I won’t complain. (Too loudly.) 

Sometimes it’s the occasions when we’re forced to slow down that we take the time to look around how notice how blessed we really are. I am so grateful for my husband who has nursed me tirelessly day and night, both in the last month and too frequently for the last six years. I can’t believe we just celebrated our 6th anniversary!! In some respects it seems like just a few months, but on the other hand, anything else feels like a dream of another life. 

I could also talk of the blessings that have overflowed on friends and family recently -- one declared cancer-free after a 2-year fight, one had too close of a call with cancer but received normal results, another is enjoying healing unprecedented for 9 years ... not to mention some of the  more personal spiritual growth in people I know ... and myself. The more I experience in life, the more I am convinced that blessings are everywhere for us to recognize and claim, not something we sit back and wait for. And, more often than not, the biggest blessings come in packages that can be very uncomfortable to open.

But I said this wouldn’t be about big revelations. :) Soon I will tell the tales of the new adventures I’m having with learning a new trick or two, and what it looks like this spring and summer will have in store for us. Until then, we’ll just sway to the rhythm of love and thank God for every new day we’re given. ♥

Rewind #32: But Even If He Doesn't...

Original air date: 13Dec2010

Well here we are, on the eve of the big day! Tomorrow, December 14, 2010, is a date which will live in infamy. I will call it “H Day,” because it’s the day of my complete hysterectomy. Wow! Here it is, at midnight, and before I know it I will be down at the hospital and then all done with surgery ... it’s funny how life moves that fast. Then right around the corner I’ll be telling people, “I remember when I had that surgery, back in my early 30’s ...” The days are fleeting, and there are no guarantees in this game! Well, at least not as far as time is concerned. Really, I’m not even promised tomorrow morning.

On one hand, deciding on this surgery was fairly easy: there weren’t many other options. We’ve tried most anything we could think of, and what was always “too drastic to consider yet” is now Plan A. One of the things that makes this difficult, though, is walking the line between having all my hopes & prayers for a “cure” (ie. remission,) or at least a drastic reduction in symptoms for both the Endometriosis and Behçet’s Disease, all resting on this surgery - and then not being devastated if it does not work out that way. I guess the bottom line is to have the kind of faith that would not only sustain me in a time like that, but actually serve to bring me closer to the Lord. There are SO many examples of that kind of faith in the Bible, and they are such an inspiration to me. Of course I think of the apostle Paul who had a “thorn in his flesh” that he repeatedly prayed that God would remove. Paul is blunt and says that God said “no.” Why? Because of the exceeding greatness of the revelations that would be given to Paul, there was given to him a “messenger of Satan” to torment him. Translation: God kept Paul humble! One of the quickest things I learned when my health failed was how little control we truly have over our health. We all think if we eat enough salad and walk around the block on a biannual basis we should live to be 100. But in reality, any day of the week we could look down and find a little spot on our skin, and our lives just changed. So yes, my health challenges has definitely served to keep my humble! Besides, if we were all strong and independant and - as the world views it - a “self-made man,” where would the room be for glorifying God? Who would see my good works and glorify my Father in heaven, if everyone just naturally assumed *I* was capable of doing that?? No one. Everyone would tell me, “well done!” and that would be the end of it. But God is glorified when we do great things through and for him in spite of our weaknesses -- so let me have the attitude of Paul and say, “Most gladly therefore I will boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with difficulties, for Christ’s sake; for when I am weak, then I am strong.” (2 Cor 12:9-10) 

As far as the outcome of this surgery goes, I of course pray for it to be successful in helping to heal me. However, if I rest all of my hope on only that outcome I may miss the blessings of what God will be doing through me if He decides to answer my prayer any other way. Who’s to say who I should meet, how I might share Christ, and what I might do with my life if I continue with my current condition? That might be where He needs me. Paul did some pretty important work while locked up in a prison! In fact, it can be our attitude during the toughest times that has the biggest influence on people - such as the prophet Daniel’s buddies, Shadrach, Meshack & Abednago. Someone twisted the law in order to make the king throw them into a furnace of fire heated 7 times its regular temperature for not worshipping the king’s false gods. Yikes! As the guys were being walked to the fire, this is what they said to the king: “Our God whom we serve is able to deliver us from the furnace of blazing fire; and He will deliver us out of your hand, O king. But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image you have set up.” Wow!!! I bet that’s not the average spare-my-life speech the king heard! But what a great example for me. For us. Let my heart always joyfully say:

My God is fully capable of delivering me, of healing me, and of rescuing me - and He *will* deliver me! But even if He does not, I will not cease to praise His name.
Amen!!

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 #28: The Hands Start Sweating....

Original air date: 23Sept2010

I’m waiting,
I’m waiting on You, Lord
And I am hopeful,
I’m waiting on You, Lord
Though it is painful,
But patiently I will wait.

While I’m waiting, I will serve You
While I’m waiting I will worship
While I’m waiting I will not fade
I’ll be running the race, even while I wait

“While I’m Waiting” --John Waller

Well ... the rubber hits the road! I moved from being in pencil on a Post-It note to being in the system ... on the books ... my hysterectomy is officially scheduled. Yikes! So let me tell you, just being on the phone with the surgery coordinator made my hands sweat! How is this going to work?? It’s funny how different it feels to go from being a prospective patient to being scheduled.

So..... now I wait.  I am thankful that even though sometimes I feel as fragile as the bloom of a flower (despite that tough-as-nails exterior), I know that I have strength beyond myself to lean upon.

68 days .... but who’s counting?? 

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.

✧ ❈ ✧ ❈ ✧
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
✧ ❈ ✧ ❈ ✧

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 #22: Three of the Scariest Words

Original air date: 10Apr2010

I have come to recognize the power of words ... the Bible calls it the power of the tongue, and that it holds the power of life and death. (Proverbs 18:21) In short, words matter! In an earlier post I talked about the power of speaking the truth vs the consequences of being a liar. When people come to know that they cannot trust what you say, that your words ring hollow in the other person’s ear because they have known you to lie just too many times, then you cease to have any kind of influence with that person. Frankly, I stop taking such a person seriously at all. When I know a person is a liar, or is willing to say whatever they think I want to hear (I don’t know why people say that, when they assume that people want to hear anything other than the truth,) then when they do say anything of importance, at *best* I doubt them, at worst I discount them altogether. 

There used to be three words that scared me more than any other phrase to say. I still find myself battling this (more often than I’d like to admit,) because these three words tend to taste very bitter and uncomfortable in my mouth. The implications of these words are not typically the impression that we want to give others about ourselves. And the more I have noticed that the more I recognize this characteristic in myself and I work to grow out of this habit, the more I notice in others. Let me give you a recent example from my life:

Last Wednesday evening I went to the local home improvement store to get flowers to plant in little pots I have by my front door. These pots are up under the overhang and receive no direct sunlight, so I needed to find plants that grew well in all shade. Since all I really know about flowers is that they are all colorful and pretty, I am really not the best judge about which flowers need to be planted in different settings of soil or light or water, etc ... (which is why mot plants around me have an average lifespan of about a minute and a half. Except weeds.) So after I had wandered up and down every aisle in the Garden Department, reading the little tags on every plant on the shelf in hopes of finding a tag that said, “This plant is very hard to kill! It requires no direct sunlight, you don’t have to remember to water it regularly, and the soil condition doesn’t really matter either. It is guaranteed to bloom constantly and last for years.” *That* plant might survive a whole five minutes at my house. Still wandering around aimlessly, an employee came up to me and asked if I needed help finding something. Evidently I was wearing my ignorance on my forehead. I told her about what I was trying to find - flowers that would do well in all-shade pots under an overhang. After a lot of huhing and hawing, she proceeded to lead me up and down all the aisles I just wandered thru, randomly picking flower tags to read to see if they matched my description. After recommending a few flowers that asked for “at least 6 hours of sun,” I think she was catching on to my frustration. I think that was on my forehead too. She assured me that those little flower tags can’t really be trusted, that they call annuals perennials, and say some need sun when they really need shade and vice versa. But then she’d grab a tag and read me the whole thing for info. At one point she read the planting instructions on a certain flower said 10”-18”. I asked her if that meant there has to be that distance between individual plants or if that’s the size planter they go in. She assured me it meant the size planter the needed. So I reaffirmed, “So it doesn’t mean that there needs to be 10”-18” between plants for them to grow?” She said, “Yes, it means they need that much space between them.” OK, now she was just making stuff up. I was not impressed. I asked if there was someone else that could help me.

So why was she so afraid to say those three dreaded words, that I have stumbled over and avoided at all costs countless times in my own life?? Why on earth can we just NOT admit, “I don’t know” ??? This is definitely an area that I have had a double-standard on for many years in my life, without really even knowing it. Whenever I was around someone (like that Home Depot garden rep) who would just make stuff up as they went along, obviously not having a clue what they were talking about, it would drive me nuts. Whenever a person actually admitting, “You know, I don’t really know the answer to that question, but let me go find out,” that was always so much more respectable! Yet I never had the courage to give that answer myself - I always had to feel like I knew the answer to every question ever asked. I couldn’t admit I didn’t know the best way to do everything -- I might look dumb (my worst fear) or people would think I wasn’t as smart as I wanted to be. What I’ve learned is that you actually look worse to the people around you! Who do you respect more, someone who willing admits they don’t know the answer to something and helps you find the answer, or the person that acts like a know-it-all and leaves you wondering if you can rely on anything they tell you? I personally respect the former! I have to admit that this is another area in which Danny has directly influenced my growth - even though I was pretty reluctant to grow at times, especially in our early marriage. I wanted so badly to be the perfect girl for him, that knew how to cook anything (that dream died quickly) and knew which socket to use. 

The bottom line of what I have learned is that people will actually respect you more and trust you more when you answer what you know and admit what you don’t. Have you ever gone shopping with a friend that says that everything you try on looks just great on you?? Well I don’t care who you are, not every piece of clothes is going to flatter your figure! After a little while, do you just quit asking for that friend’s opinion, because you know it’s always going to be the same answer and you can’t trust it? Although they are trying to be nice, I would rather have a friend be nice enough to tell me that if I buy those jeans I may as well be wearing a “Wide Load” sign. That’s a friend I can trust. I have learned that I feel more proud with myself when I can answer with confidence what I actually do know, and I feel more helpful as a friend when I help find the answer for them that I didn’t already know.

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: A Man's Word

Original air date: 10Mar2010

How would you finish that sentence? “A man’s word is” .... his bond? His oath? His worth? A man is only as good as his word? I would probably agree with that last one. (And just so we’re clear, here I’m using the term “man” as in “mankind” or “humankind” ... substitute “guy” or  “girl” or anyone in particular for it. I’m talking universally.)

The interesting thing about my last few years is that I feel I have crossed over some invisible boundary. I didn’t notice it at the time, there was no “coming of age” celebration or a rite of passage I had to do, like eating eye of newt ‘and now I am a woman’ or anything, it has just slowly happened with time. There’s a funny phrase that I never used to understand that goes, “The older I am, the smarter my parents get,” that now I get. I mean that in terms of my physical parents, in terms of the generations before me, and in terms of general worldly wisdom. There are some things that make more sense to me now than they ever have before, and some things I appreciate more than I ever have. It just means that we really *don’t* have the world as figured out as we think we do in college, that yes - everyone really does go through that at that age, and no - your parents really didn’t spend the last 60 years sitting in a closet. They actually might have life experience that you just might be able to learn from. But don’t worry, they understand that too - after all, they felt the same way about their parents at that age. ;-)

One of those things I have come to appreciate is the strength of a person’s word. Can you trust what they say? Always? Do you ever have to wonder if they are just saying what they think you want to hear?? The more life experience I get the more I realize what it is worth to be able to depend on someone’s word at face value, and also the consequences of what it means if I cannot depend on it. Unfortunately this has come to light all too clearly recently, and it has just broken my heart. (Don’t worry, Danny and I are *fine* - it has nothing to do with that.) When a person can look you in the eye (or at least address you directly) and give you calm assurances of something, when you later realize that those words were only meant to soothe you and there was no truth in them at all -- what does that do for the next time that person tries to assure you of something? Even if it was just a one-time offense, there is still a mark there left in the memory. When a person is known for that characteristic, well then it becomes a filter through which you always view that person and their words. 

There are those on the opposite side of the pendulum that struggle with “too much” honesty -- in perhaps knowing how to address someone on a sensitive topic in a caring way, or knowing when to even say nothing at all. This type of person used to be my biggest concern, because of how many times I had been hurt by an abrasive approach. More and more experience in life has revealed to me that while we could always look back and write and rewrite our speeches to one another to word it better, more often than not I would have to hold up my own hand and admit that when I was being addressed about a sensitive topic and then complained about the delivery, there really was never an approach “compassionate” enough to avoid my wounded ego blaming the deliverer for the fact that I simply did not want to hear the correction being offered. But which is easier, to admit that I don’t like to receive correction, or to throw flaming arrows at the messenger for having the audacity to come to me about such a sensitive issue?? Which is done more frequently? And how often is the content of the message completely deflected on account of an attack on the delivery boy? In my experience, *far* too often. I can probably count the number of times I have overlooked a poor delivery (or actually even a mediocre one) to open my heart to the message being said. In our culture of “offend no one at all costs” and of “political correctness for all,” I applaud the person who still has the guts to have difficult conversations with a friend. They are hardly ever received well, and almost always the character of the messenger is assaulted for being unloving, uncompassionate, self-righteous or even hypocritical. Don’t we even go to the extreme of pointing out completely unrelated “faults” in the messenger, hoping that it absolves us of a responsibility to hear the message? Ahhh, the lengths we will go to in order to preserve our self-made view that we are perfect just the way we are, and it’s the *world* that has to change. 

In my recent life I have challenged myself to be more of an approachable person, especially when it comes to sensitive issues of correction. Do we think of ourselves as someone a friend could approach, if they had a concern to talk to about us? Is this view of ourselves actually grounded in history - or do we just *want* to be the approachable kind of person? If we asked our spouses or our family or our friends if they would be comfortable coming to talk to us about an issue they knew would be sensitive, what would they say? I have to honestly admit that my poor husband has lived with a wife who was not open to those kinds of conversations for far too long. It has really become emblazoned on my heart and I am working (with the help of God’s Spirit) to become the kind of person I desire to be, and it’s not easy. I know the struggle of the flesh and of pride all too well. But my motivation is that at the end of the day, I want my loved ones to know that *I* know that I am not perfect. I do, however, know the One that is, and I am trying day by day to live more like Him - and I know that along that road I may often need to stop and get directions from others walking the same path. Just because they help and offer me directions doesn’t mean that they think they’ve already arrived, but it just might be they can recognize a poor shortcut when they see one. Instead of shooting the messenger, claiming that ‘until they have reached perfection how dare they help me get there,’ shouldn’t we be paying more attention to the actual message? And I daresay that offering sincere gratitude to the messenger would go a long way too. Face it, we don’t really have all that much practice in talking to one another about gut-deep topics, so when we actually try it we might leave a lot to be desired. But we’re all trying. And I would rather know that when someone says something to me, of all the things that go through my head, whether or not that person is being truthful should not be one of them. It might be more uncomfortable at the time to tell people the truth instead of what you think they want to hear, but in the long run you will be a LOT better off for it. When have you ever looked back and been glad that someone did that to you?

Just some food for thought.

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.”