health update

So far I haven't heard anything about my MRI. I don't know for sure because of the holidays, but I think my neurologist would have called by now if something was up. Anyway, I have a consult and possible ex-rays w/ a chiropractor next week.

As far as I'm feeling, I'm still doing fairly well but experiencing ongoing symptoms that prevent me from fully engaging in life the way I would like. I'll check in again next week after I know more.

EMG says I need an MRI

Ohhhh yes, that's what's on my plate right now. As of yesterday, an EMG on my ARM showed a possible pinched nerve in my NECK which could be from a problem in my cervical spine. I had a cervical spine MRI a year ago and everything was fine. But now the test indicates otherwise so here in the midst of enjoying the holidays I'll be dealing w/ more health issues, along w/ anxiety about surgery which was mentioned as a possibility after my test. Spinal surgery???? Well, if it goes well and fixes everything, great. But along w/ the risks in general of surgery itself, I don't have a lot of confidence that it will do the job and not create further problems. Okay I've gone down this path far enough.

Yes, I do have a chiropracter visit scheduled for the 1st wk of January and I will definitely go thru w/ that if the MRI comes out clear. If the MRI does not then....we will see.

The time has come

Today I took Ethan to an eye appointment. Right next door, a chiropracter that's been recommended to me has his office. I went in to see about insurance etc. and didn't get much of an idea about what would happen w/ that, but went ahead and made an appointment for a consult and possible x-rays etc.

Why now? Why not now? It's been over a year and my physical therapy, meds etc. aren't getting me where I want to be. They're helping, but I'm still dissatisfied w/ living w/ pain esp. when I drive. Right now I'm okay but it still varies so much throughout my day.

Big picture, the extreme leg symptoms I had at the beginning are gone. I'm not limping or even noticing much w/ my leg anymore. But even so, I'm achy in my pelvis and back and it's wearing me down.

So, I figured this day would eventually come. The main thing that's been holding me back is finances. I still don't know what's going to happen w/ that so I'll figure it out as I go.

so what about Christmas?

There's a lot of cultural stuff surrounding this time of year, and most of it gets a bad rap, being labeled commercialism or what have you. But I must confess, when the lights go up on the houses, the music starts playing, and the hubbub to and fro gets going, I feel a sense of wonder that nothing else can create through the year. Call it Christmas spirit or whatever, it grabs me and carries me along, not quite the same way as in childhood, but having a magical quality nonetheless.

And so, am I allowing myself to be swept up in a false mystical experience and not really focusing on the true meaning of Christmas? Maybe so, but why does it have to be one or the other? Why do we have to make such a big deal about what's acceptable and what's not?

I still prefer to downplay Santa as much as possible and watch my spending, but the more I see how life can change dramatically, how people can undergo such terrible suffering, how the economy is hurting so many, the less I want to sweat the small stuff and the more I want to embrace life and marvel in what all those things represent. As they say, everything has a good and bad side to it, so let me bring out some of the good that can go along w/ the bad.

Spending money on presents: We can definitely go overboard w/ this, but the good part of it is when we take the time to think about who we're buying for and make an attempt to touch them in a personal way. We don't always succeed in finding the perfect gift, but sometimes it just makes more sense to spend a little extra to get something the person will really appreciate than less because we're trying to stick w/in a budget. Or vise versa - we may have in mind to spend a certain amount on someone but find something for much less that fits them better. The point is, when we shop, the part that's important is thinking about how to give a meaningful gift. Sometimes this requires deciding against something they'd really like but has no real value, only tickles their fancy for a few fleeting moments. This is particularly the case w/ children!

Decorations: The bad side of this trying to show off and competing w/ others around you (National Lampoon's Christmas Vacation). The good part however is making your home look special, creating an atmosphere that welcomes anyone who visits and gives your own family a sense of joy as they savor their hot chocolate and simply appreciate being together. Also, taking time to think about the decorations and what they mean is always significant. I especially enjoy putting up ornaments I bought from a place where my dad works called Ten Thousand Villages. They collect handmade items from third world countries and sell them in the states to help support those countries.

Food: Okay, it's so obvious what the bad side of this is: GLUTTONY! But the good side is partly in the process, enjoying baking and preparing dishes w/ others, sharing fellowship, etc. along w/ consuming those items. We can limit how much we eat, it just requires having a proper perspective. Knowing those things were made w/ special attention, either by ourselves or others, we can respect the work that went into them and sample rather than gorge.

Music: The bad side of this is getting hung up on lyrics or styles that don't appeal to us and making fun, or thinking we can only listen to hymns because nothing else edifies. Pu-shaw as our forefathers used to say. Our kids always makes fun of us playing the original Messiah during our tree mounting/decorating time together. But as they get older, they're understanding that traditions are important, and different styles of music can be appreciated. We have fun laughing together as a family while at the same time letting the music pervade our souls despite ourselves.

Charities: Yes, this can have a bad side. When we give out of pity or obligation, that's bad. But when we truly want to show Christ's love to the less fortunate and give out of humble compassion, that's good. Along w/ our giving, we need to remember to thank God for giving us the means to help, and ask Him to show us how we can give sacrificially beyond what we can afford. That means saying no to one thing so we can say yes to another. This might mean more than denying yourself a cup or two of Starbuck's coffee. It may mean something like not attending that holiday movie in the theater, spending less on your own food bill, not taking a trip or whatever.

What about Santa, reindeer, and other "secular" things surrounding the holidays? I think this is a very personal decision, just make sure you're in tune w/ God as you make it. The elephant in the room here is that CHRIST needs to get the main focus. If that's not happening, something is wrong. Our family practices the advent wreath and candles, reading Scripture together and singing carols. There are many other activities we participate in as well, but this is central. We also take our nativity scenes seriously and display them in the most prominent places in the house. I try to read the Christmas story on my own every year, even though it's so familiar.

Let's celebrate our culture and what we have. Many countries don't have any way of legally celebrating. Even if we do go a bit overboard, we have the privilege of doing it, and those of us who are truly worshiping Christ in our hearts can do it in a way that shows others there really is a reason to celebrate.

why I stay up late when my husband's away

It's late and I'm not tired. I'm usually exhausted by now. I seem to be more wakeful when Dave's away and find myself puttering away my time, like writing on this blog just for the sake of doing something.

Here are some theories:

1 - I miss him and can't settle w/o him.

2- I don't miss him and enjoy alone time w/o him.

3 - I do more frivolous things w/o worrying he'll think I'm being frivolous, like playing around w/ outfits or redecorating the house.

4 - I craving more social contact thru writing since I don't have someone to talk to, although admittedly we prob talk more when he's away than we do when he's home.

5 - I'm not tired because he wears me out.

6 - I'm overly tired because I carry more of the responsibility and so I have to unwind.

7 - I have a houseful of teenagers, oh yeah, that's pretty much normal whether he's here or not but I'm running out of excuses. But aha, this is actually a reason b/c I like to know we're all settled for the night before I retire - I can snooze away when he's here, even when the guys are gone. Is this logical? I think not.

8 - When he's gone I don't feel like reading as much which makes me tired.

9 - I was going to try to come up with ten reasons because that seems like the magic number. Let me see if I can do two more (yawn)... well now I'm really awake b/c a bunch of smoke alarms just went off from burned popcorn downstairs. Let's see, #9 I'm subconsciously more worried that something will go wrong???

10 - I like staying up late b/c it's so quiet (w/ the exception of what happened a few moments ago). No, he doesn't snore. He does sometimes flip thru magazines or keep his light on after I've turned mine off, but that doesn't really affect me too much. So this is probably a lame reason. But I've got ten now and I'm very very tired. Good night.

Sleep Therapy

The amount of sleep I got in late August through the middle of October might be compared to that of someone recovering from surgery or illness. I was falling asleep in the evening by nine, waking up at 6:30 and sleeping a full hour in the afternoon. I only woke up from the naps because of setting my alarm and needing to be somewhere - I'm sure I could have slept another hour given the luxury.

I've always needed around 7 or 8 hours at night, w/ about a 20 minute catnap in the afternoon after having kids. But these past two months were different - more sleep than I've ever had as an adult. I speak in past tense because my body isn't requiring that amount at this point. This only started happening after Samantha went to school; I had already been taking all my meds for awhile so it wasn't linked to side effects from them. Rather, when the demands of life finally lessened, my body started to shut down.

I think I've finally slept off the stress of years of daily struggle with Samantha, being uprooted from routine and having a very sick son, and my own illness and lack of ability to function.

Wouldn't it be nice if you could just take a pill that gave your body all it receives naturally from sleep? Or (if you're familiar w/ Trekkie terms) wouldn't it be cool to just step into a Borg rejuvenating unit?

As I think about this two things come to mind. God created sleep to restore what we use up. It's like economics. Limited resources. What gets used needs to be replaced. Sometimes we use up way more than we can replace, our circumstances push us past our limits. In those times we have no choice but to persevere and hope the day will come when we can regain some balance.

The other thing is that God never slumbers or sleeps. His energy never runs out. We can take comfort in knowing His resources are always available to us, no matter what situation we face. Years of stress take their toll, and sleep won't always fix it, nor does sleep come easily in some cases, but there is always hope if we remember God will supply what we don't have.

Ramblings

I feel like writing but don't know if I have anything to say. This morning someone encouraged me to get as much joy out of life as possible, even w/ the daily ongoing physical struggle. This wasn't an insensitive comment, it came from a woman using a cane. So one of the things I take pleasure in is writing, even if I have nothing to say.

I could pontificate about the larger topics of this life, give my opinion on Obama and the Nobel award, or something of that sort. I could share details about my family's life which would probably bore most of you because we're all living it on some level and it isn't really news. I could tell a silly story about my childhood but could never measure up to my dad's skill in that department.

Why don't I just focus on the now? Right at this moment, Dave is tickling Samantha downstairs. She gets very loud when he tickles. I get very irritated by loud noise so that's why I'm upstairs. It's actually quite therapeutic for her w/ her sensory processing dysfunction, so it's not only just good dad/daughter time. Now she got her feelings hurt by something that happened and is up here w/ me bouncing my exercise ball. I'm getting tired of writing about nothing so I'm going to sign off and get us some dinner. Our kids are at youth group dinner so we just fend for ourselves on Sunday nights. Of course I have to fend for Samantha too. Frozen nuggets, here I come.

Progress!

I am finally getting sustained relief from my symptoms. I can attribute it to many factors:

1. I don't have as many physical demands w/ Samantha in school all day.
2. I have a combination of medications that seem to be working w/ few side effects.
3. I am sleeping a lot. I go to bed around 9:30 and take a good nap each day.
4. I am working out on the circuit equipment 3x a week and walking 3x a week. The circuit exercises are designed to strengthen my core muscles in my pelvis so my SI joint doesn't go out of position.
5. I have adjusted the seat in my car and this has made a huge difference. I kept trying different lumbar cushions which helped some but not enough. Finally I decided to raise the seat higher and this put my back, hips, and leg in the optimum position for comfort.

I want to thank the Lord for helping me re-establish a little more "normalcy" and giving me grace to endure the lack of it. I also want to thank my family for all their support and love.

The Vicious Cycle of Physical and Emotional Pain

In the magazine "Neurology Now" there was a recent article about CRPS - Complex Regional Pain Syndrome, a condition in which nerves go crazy following an injury. You may have heard of it, esp. in relation to the ketamine coma, an extreme treatment administered in other countries. Some patients revert to this when there is no relief for nonstop extreme pain - they've tried everything from acupuncture to high doses of medications. In many cases,they decide to go through with this risky procedure as an alternative to suicide.

The main thing that caught my attention from the article was its wholistic approach to pain management. It pointed out that basically three factors are involved when someone experiences ongoing pain - the underlying causes of the pain, the pain itself, and the emotional affect it has on the patient. All three need to be treated.

I know this to be very true from my own comparatively minor daily struggle w/ discomfort. I call it that because it doesn't really hurt, it just nags at me, sort of like a sore stiff muscle or back ache. Right now as I'm writing this, I'm feeling pain in my backside, to put it delicately. I'm going to try adjusting my position which I do umpteen times a day to try to make it go away. (Editing note, after I finished this entry my discomfort was gone.)

There is a cycle that accompanies all this - the pain or discomfort creates emotional anxiety which then tenses the muscles which then leads to further pain. Of course the main thing to target is the underlying source of the pain, but that gets tricky for some of us folks. My physical therapist tells me repeatedly that I've got some of the most unusual symptoms she's ever seen. How does that make me feel? Good on the one hand, that I'm not going crazy, and terrible on the other, because it's harder to overcome. I have a hip rotation, SI joint displacement, one leg shorter than the other, and mild arthritis in my back (L1 and L2). Not an easy problem to fix.

Getting back to the article, the three things that need to be treated are the underlying source of the pain, the pain itself, and the emotional suffering. The author recommended targeting the initial injury area w/ physical therapy or some type of orthopedic related treatment, being under the care of a doctor who can help you choose appropriate medications to block pain and minimize anxiety or depression, and in some cases seeking psychological help.

If I'm understanding my body correctly, my vicious cycle goes something like this - first the discomfort/pain, then the anxiety and muscle tension accompanied by emotional distress, and finally twitching. I'm still under the care of a neurologist and am slowly weaning off of visits w/ the physical therapist while following her plan for restrictions/exercise. If needed I can go back to my orthopedic specialist and get more injections to the problem site. I take four prescribed medications, all of which are targeting the nervous and muscular systems. Fortunately, some of these also help w/ anxiety. I also take vitamins/supplements, some "prescribed" by my neurologist and others of my own choosing. I'm popping lots of pills!

When or if my SI joint stablizes (which is very unpredictable according to my physical therapist), I would like to try pain free living techniques that I've heard about. Right now those things could worsen my condition.

One last note, a secular medical article is often on target spiritually without knowing it, because it addresses the idea of wholistic health, pointing to the fact that we are God's creation. I like to remind myself that I'm here to glorify my maker, and my body is His temple, no matter how healthy. I should continually be striving for the best health possible, while at the same time accepting each difficult situation, knowing either way I'm an instrument to bring glory to His name.

The Big Picture with Samantha

As I was out walking this morning I had time to reflect on the bigger picture of the last week w/ Samantha struggling to adapt to first grade. The adjustment has been harder than we thought since she did fine with two years of preschool/preK and one year of kindergarten. This school day is much longer and harder and she's feeling it big time. As a home schooler, I struggle w/ whether it's healthier for her to be home w/ me; in the past I was convinced her being away at school was the best thing for her her well-being overall. With her sensory processing dysfunction, she found it extremely difficult to "just be a kid" at home and was demanding, out of sorts, and more needy in general. At school she was well-adjusted, happy to be with her peers, and enjoyed the routine. It gave her a place to not feel threatened by authority and feeling the need to compete with older siblings. We always felt that a neighborhood friend would have made a tremendous difference with our issues at home, but God didn't provide that for us so we've had to manage the best we could.

So the big picture - the positives of this experience of separation anxiety and "forced labor" in the classroom.

First, God is affirming that Samantha has truly attached to me as an adoptive child should. I have not really questioned this before since I felt her behavior issues were from her sensory problems, not lack of attachment. But as a parent it's always nice to have concrete evidence that when your child is in crisis they want you. Even my 17 yr old son demonstrated this when he first had leukemia. He was more open to touch, holding his hand, etc. than a boy naturally would be with his mother at that age. Samantha has expressed a lot of missing me, wanting me, and coming to me for comfort in the midst of all this. She's been waking up early and wanting me. She demands I put her to bed instead of Dave. All signs of "regressing" in a sense but normal for a child in pain.

Second, I have become more convinced that my age is a great comfort to Samantha. As I think about it, all the authority figures in her life have been mid-age women, including her foster mom in China. Her pre-school teachers are either my age or older. Her kindergarten teacher is probably in her fifties. Guess what, her 1st grade teacher is in what I'm guessing to be her late twenties. Samantha says she seems like a "sister" to her, meaning she's uncomfortable with how young she is. This has been strangely helpful to me and my role with Samantha because I've sometimes felt like I'm too old for her. I'm going to be in my sixties when she graduates high school. I've wondered if she views me as a grandma, not a mom. Her birth mom is probably much younger than me. Now I know she feels safe with an old hag like me (chuckle, chuckle). That's a good and positive thing.

Third, I'm seeing more evidence that Samantha's overall needs for growth and development require outside help. We can't do it ourselves. She and I have too volatile of a relationship, and our family situation and my health have put so much pressure on us that I don't want school work to become another source of contention. She literally demands to do things her own way when I attempt to work with her, writing things in reverse order, picking and choosing which part of the lesson she's willing to work on, reading only certain books that appeal to her (which is very confusing why she rejects so many), etc. But in one week's time, I've been amazed with the productivity I'm seeing coming home in her backpack. And since the example's been set at school, she then willingly does her homework, following the instructions! Sometimes I misunderstand the instructions and she makes sure to clarify what she's supposed to be doing!

Samantha has always struggled with hard work, be it small motor, large motor, potty training, picking up toys, etc. We've given her seven years to learn how to be a normal kid and tried to accommodate her as much as possible. But she needs to grow up. We'll still "baby" her at home as much as she needs, but she needs the balance of moving on in life. We know she's got it in her! She just doesn't know it, but she'll get it in time.

Things I've taken for granted

The human body is an amazing creation. Sometimes we don't really grasp that till we lose something we've always had. Many people my age are familiar with some level of pain from injury, disease, or simply getting older. Others are fortunate enough to not have any major health issues.

Before reaching my mid-forties, the only experience I had with real discomfort was in bearing and delivering my three birth children. I was virtually accident and illness free through my adulthood.

Now I know how much I've taken for granted. I've alluded to some of my limitations in earlier posts and would like to give you some more specific examples. My hope is that there will come a day in the not too distant future when I read this and am thankful I'm not experiencing these things on a daily basis anymore.

-I can't comfortably read a book to Samantha because it involves sitting next to her; couches aggravate my pain.
-I struggle to help Samantha clean up her messes because it involves a lot of awkward bending or twisting.
-I can't drive or ride in a car for very long without feeling pain in my lower left back.
-I can't push a grocery cart unless it's perfectly balanced and even. I've had to change carts several times after getting into the store. I can't accumulate too many groceries at once or I have trouble.
-I can't sit very long in the family room to watch TV because I have to turn my neck and it messes up my alignment. We have a TV in our bedroom also but I can't see it very well because it's farther away.
-I can't lift a full basket of laundry and carry it w/o aggravating my condition.
-I can't pick up Samantha or anything heavy.
-I can't go w/o shoes while walking/standing or my pain increases.
-I can't vacuum or clean bathrooms.
-I can't climb flights of stairs too often in a day.
-I can't do yard work or gardening.
-I can't do cardio exercise except mild walking. Even being in a pool is difficult.
-I can't sit at a booth in a restaurant without hurting. Straight chairs are the best.
- I have great difficulty keeping my legs and feet well groomed.

Okay enough examples. I can still cook. I can still run errands. I can still type. I can still attend church (with my pillow). I can still read and have my devotions. I can still do paperwork and laundry. And many other things too.

When am I totally pain-free? When I'm sleeping. When I wake up in the morning, I'm "cured." For about 15 minutes or so. Then the cycle starts all over again. When (not if) I get better, I'll never never take the small things of life for granted again.

The princess and the pea

I, the princess, have finally found a comfortable position. First, some background. When I first started having leg trouble, I couldn't function on my feet but was fine sitting. Then, when I started PT and got an injection, I started getting better on my feet but couldn't get comfortable sitting.

And thus my search for a comfortable position began. First of all, my therapist recommended a lumbar seat cushion. I tried hers out for a week and then bought four of them. Yup, four. One is on my dinette chair, one is in my car, one is upstairs in my bedroom, and the other one that I thought I'd use somewhere ended up being on Samantha's dinette chair.

But the real purpose of this post is to tell you about my recliner which I searched high and low for. It all started when we went to Sam's and they had this incredible deal on a sofa/recliner set. I sat on the sofa and reclined it and vuaola! it suited me to a T. It had a continuous leg rest that connected to the chair and put my legs in a downward slope. Very comfortable. Right price, wrong color. Would have had to redo the whole family room, maybe even curtains. So no go on that one. Started checking out other furniture stores for similar item, and of course the price was way more, I mean WAY more than I wanted to spend. Besides, most of the sofas and recliners were HUGE. It's all about theater seating these days. So no go on that stuff. Finally off I traipsed to Lazy Boy. Oh yes, they had sofas and recliners of all shapes and sizes, anything anyone could want. So I found a recliner that fit me perfectly, ordered it, and upon getting it home realized it was too dark, even tho it was "neutral." You know me, not acceptable. So returned that and gave up for awhile. Then on a whim one day, I decided to go back to Sofamart because the first time I looked I was looking at sofas and not chairs. Well I found a really "cheap" chair that had a nice firm cushion, fit me beautifully, and came in the color I needed.

You're wishing the story ends here but unfortunately it doesn't. When I got the chair home, I thought it strange that I hadn't noticed it was a rocker recliner. That was problem #1. Problem #2 was that my feet didn't touch the floor like they did in the store! Ugh. Finally, when I reclined it (which I don't think I tested in the store), it put my legs in an upward slant, not straight or downward which I really wanted. Sooooooo, in order to get my feet to touch the floor, I ordered yet ANOTHER cushion for my back, but since I was ordering online I got two different ones, not knowing which would work. Of course, neither one really worked too great, one was too cushy and the other was too hard. Oh yes, princess and the pea. But you HAVE to understand this is not just comfort, this is just wanting to be free of blasted pain, either in my leg or up in my SI joint/lower back.

Yada, yada, yada went thru numerous combinations of cushion positions, non-reclined, reclined and still didn't feel settled. But at last I think I've found it (I've had this chair for about six months?) - I'm sitting here reclined but not fully reclined, with the cushy cushion under my knees, making the recliner "feel" like it has a continuous leg rest, what I wanted in the first place.

Are you totally confused? Or at least a little amused? Did you make it this far? Do you think I've totally gone bonkers? Maybe so but at least I'm in no pain! Through typing this whole long crazy story.

Radical Life Changes

There's less than a month before school starts, and I won't be home-schooling. That leaves me feeling confused about what life will be like for me come fall. I have some definite goals, to exercise and continue w/ PT, to provide more variety and nutrition in meals, to spend extra time w/ Dave, to attend a Bible Study, and to be involved in the kids' schools. I may do some extra writing if I get inspired - I've always wanted to write articles and such based on my personal Bible study at home.

One word I would use to describe myself is methodical. I guess that could conjure up different ideas for different people, but for me what it means is I like to pace myself, I'm not a super-energized get it done quick type of person. Rather I like to take my time and pay attention to detail w/ whatever I'm doing. You would laugh at me if you saw my process even in writing, I read and re-read and make sure my thoughts are expressed to my satisfaction. I do a lot of editing as I'm writing. Anyway, life the past six years (and even before to a lesser degree), has demanded of me that I fly by the seat of my pants and not take my time the way I'd prefer. With the changes that are coming, I think I'll have a little more freedom to be that way, hopefully I won't get lazy. I want to be intentional and focus on what glorifies the Lord and builds up my family, church, and community.

Not only myself, but the rest of the family is going through some radical changes. Ethan starting college, Bryan branching out w/ his music and exploring where God is leading for college, Katrina starting "classroom" life, Samantha doing a full day at school, and Dave trying to manage life with us all in our various stages. He's full of wisdom and does a good job keeping us all on track.

Well I'm actually very exhausted, I've been struggling w/ major tiredness most of the day and so it's been hard to write. But I need to be sitting to rest my leg so I thought I'd give it a go.

Brief Health Update

I'm walking and standing great 90 percent of the time. Sitting can be a challenge if I'm not in the right position. My leg still stings a little bit off and on when I'm on my feet, but no more major stiffness, unless I'm very active physically (i.e. breaking my PT rules). When it starts to act up, I ask Dave to do a leg pull before it gets bad.

Medication wise, I visited my neurologist a couple weeks ago and she changed the medication I've been on since the ER; it's not intended for long term. She switched it out to a low dose antidepressant that's supposed to help w/ twitching as well. The transition was rough at first w/ extra tiredness but I think part of it was withdrawal from the old medication now that I'm feeling more normal. Since I had trouble she put me on a half dose and today I'm doing the full amount. I expect I'll be a little extra tired the next day or so and then adjust. I counteract w/ caffeine - not too much :).

The other thing that happened w/ this new med was it didn't interact well w/ one of my others, I started feeling more spaced out. I was relying on that med for nerve pain, and since this new one was supposed to help w/ that as well, I cut down how much I take since the amount was up to me. That did the trick.

Bottom line, I'm feeling mostly normal most of the time. Yay! But I still have major activity limits. Boo. But I'm doing a 15 minute workout on equipment at the club 3x a week which seems to be helping overall. Yay. But I'm still pretty dependent on meds. Boo. I take 4 meds and 4 supplements.

Ok, this was supposed to be very brief so BYE!

Sister's Keeper

I heard that a cancer support organization recommends family of cancer patients not attend this movie because it gives such an accurate portrayal of the world of cancer. I've also heard that the book is better, or at least is very different. I don't expect I'll pursue either for now. I'm not sure how other people who have read or seen it will perceive our own experience, but one thing I know is there are just parts that can't be portrayed or described, the only way you can truly know it by living it.

Something else that got me thinking on this topic was watching an episode of "America's Got Talent" last night. The woman at the end was amazing - she performed opera style which isn't something I'm necessarily drawn to but it came across very well. When she finished, the judges praised her, and then she shared she was in remission from cancer. I found it interesting that the judges then became instantly enthralled with her and said she not only had amazing talent but was an amazing person. Maybe what they meant was that she still pursued her dream, didn't let the potential threat of the illness keep her down.

People have treated Ethan that way as well. You become an instant superhero when you've had cancer. And it's true - being a cancer patient is an incredible challenge, and I commend Ethan for persevering so well. At the same time, he had no control over what happened to him and HAD to deal with it.

That being said, family members are faced with a lot as well and are treated with increased respect, but I'm pretty sure any family member you talk to would say the respect and attention isn't worth what you go through. That's not to say that good things don't come out of it, they most certainly do. But the way others view you isn't one of those things. Whenever I hear of someone who potentially might have cancer, I pray with all my might that they test negative. I don't want them to have to go through it. I cried when I found out Samantha's classmate's mom had lymphoma, someone I barely know.

So what's the hardest part? What a tricky question. Getting the news, being in shock, processing all the treatment info and meeting all kinds of personnel, watching your loved one suffer, fearing the outcome of treatment, living in a strange house in a strange city, sharing a kitchen w/ others....

For me, the best way I can describe it is loss. Loss of innocence, security, routine. And being that in our case it was a teenager, watching him lose so much at a point in his life when independence was w/in his grasp. That really hurt. Not only was I worried about whether he'd be okay physically, but in all of life as well. One thing that really helped was having Caringbridge and having lots of visitors in Memphis. It helped us keep connected to his "real life" - we had to remind ourselves that there was hope and that the cancer wasn't his identity.

nothing profound

I feel like writing but don't have any specific thing on my mind. My leg's been pretty good lately and Ethan's doing fine while still getting weekly treatments.

In a way the second half of our summer has officially begun. I say that because the first part was more events and traveling - we had graduation, my parents visiting, open house, ISU preview, and our trip east. Now we settle down into more general "stuff" - Samantha doing swim lessons, art and zoo classes, Katrina resuming ice skating lessons and doing a drama class and volleyball camp, Ethan working at Panera, Bryan teaching guitar and doing other odd jobs (one of which is helping Dave with his wind energy conference), and Dave working on a more regular basis.

One of my goals for the summer is to get Samantha a little further along in learning to read. She actually likes working on it with me if I catch her at the right time. I keep it low key and she seems to like figuring out a few words on her own but mostly prefers to read aloud with me. I pretend like I'm sounding out the words myself and she joins in. It's like a game. I also have her pick words out of a sentence. At this point she's still really a pre-reader, not a reader. So we've got a lot of work to do.

Another thing we've got on our plate is finishing the girls' bedrooms. I plan to help Katrina get started removing her border tomorrow. Samantha wants hers removed as well, even though it's perfectly fine, so I've decided we'll do it since she's been complaining about it for several months. I got another cheap one to replace it that suits her better; it may not work as well but she'll be happy. We didn't find a border for Katrina, so we're going to try to paint a border - a solid background with stencil style additions.

Now this is going to seem really random because it is, and yet it isn't; you'll see where I'm going w/ it in a minute. There's a scene in "The Curious Case of Benjamin Button" where the narrator describes how one person's interruption in their routine leads to all sorts of subsequent events that would not have otherwise happened if the first one didn't. It's sort of like that with our bedroom scenario. Ethan got sick, and Katrina had to fend for herself and help out more at home than if I had been here full time. She also had to school herself more or less for a year. It complicated things even further when I got sick and was running to Carle Clinic about twice a week and limping around the house or resting a lot. Because of all that, Katrina became increasingly discontent with sharing a bedroom with Samantha after having to babysit her so much (no wonder), and also expressed interest in attending Cornerstone a year early, which was the long-term plan for her anyway. At the same time, Ethan was responding to treatment, got through the worst of the side effects, and was able to pursue college. He had already claimed space in the basement for his Make-a-Wish studio, so it made sense to turn that into his at-home dorm room since treatment would be ongoing thru the middle of his sophomore year.

The bedroom scenario might have happened either way in the end, but I'm pretty sure at least the timing would have been different. So here we are, finishing the girls' rooms this summer after separating them last winter.

And I'm at the end of saying nothing really profound at all.

(These pictures added after the rooms were done)

Life and Death

I'd like to start out on a positive note, and hopefully won't get overly negative. I am doing great today. My leg AND my left pelvic area are almost pain-free. I'm experiencing numbness in my left foot and a little stinging in my leg. The stinging has replaced the burning and stiffness since my injection for about 85% of the time. On the few occasions I've felt really bad, I've done my correction exercises and they worked.

Bottom line - the injection caused a lot of irritation in my pelvic area, sitting was really hard. That's fine now. Walking and standing are good most of the time, so the injection seemed to give me some relief, but not totally. I think what's going on is that I'm having slower progress because of lifestyle demands that require me to ignore some of the PT recommendations, and also because of additional exercises I've been given that stir up the pain. The medications help me overall so I can keep moving forward. My physical therapist has been checking my SI joint position and says it's much more stable than when she first started seeing me, but it's still not fully stable (she has to manually give me adjustments, but not as much).

Whew, sorry for that long explanation. Now to what I've had on my mind, life and death. I'll share snippets of conversations and other things that have led me to dwell on this serious topic, starting with this morning and moving back in time. This morning I talked with someone at church who rarely makes it to service because she has a very sick heart. She may need a transplant but is holding off for now. She's had a rough two years with losing her mom and another close relative. Last week I talked with friends from Philadelphia who've been in touch with our other friend who's husband lost his battle to cancer in January. She is grieving deeply. I also read a blog written by the husband of a friend in town who had early stage ovarian cancer last year; it was touching to read about his struggle in facing the possibility of losing her. After several months of chemo, she's been cancer free and has a good prognosis. On Caringbridge, the site we use for Ethan's illness, we've been following another family's very difficult journey; we first met them at Ronald McDonald House. The son has the same type leukemia as Ethan and was temporarily paralyzed from treatment, but after many months regained most of his mobility - he still is in therapy. Just recently, his grandma died after a brief serious illness. His mom has been having a lot of stomach trouble and is undergoing testing for that. In the past week, our church has been praying for a former church member in another state who had a tumor removed and was doing well, then thought the cancer came back but found out it was only a buildup of fluid. Finally, we've heard of one kindergartner's mom from Samantha's school who's now in hospice, and are following another classmate's mom's battle with cancer.

In the meantime, Ethan is doing great! He seems perfectly healthy with few side effects from continuing treatment. We were so excited a couple weeks ago to see him graduate with his class and receive a standing ovation for all God's done.

Life, death, why do some "win" and others "lose"? That is a question I can't tackle. All I can say about it is it's reality. And truth prevails over it all. Truth says that death has been conquered, everyone in the kingdom wins. There are no losers. But it sure feels that way to those who have to go on with their lives and adjust. God bless them, God protect them, God give them strength in the midst of their pain.

It's hard to think of a way to wrap this up. What I think I want to do is just remind myself that every day is a gift, even with its struggles which sometimes are many. Moments are important. They count for eternity. So many precious moments that blend together to make days, seasons, years. I want to remind myself not to miss out on what I've been given, to treasure people, to treasure creation, to treasure life, and above all to treasure my Lord.

Two week mark

Hi, it's been two weeks since I had my injection. I thought that if it worked I'd be feeling way different by now but my therapist told me it takes at least two weeks before you can really make any conclusions on how well it did the job. So I'm just waiting it out. My symptoms have settled down in some ways and been worse in others, and the bottom line is I still have to rely on my meds to get me through. Standing and walking have gotten easier, but sitting has been more of a problem. Right now I'm typing from my basic wooden rocker in my bedroom, it suits me pretty well. If this sitting trouble is just related to the injection itself, then I can be fairly encouraged because the standing and walking was what was hardest for me before.

I'm amazed I've been living with this for nine months now! I really don't want to sound like I'm complaining but I honestly don't remember what normal symptom free life is like. It's not like I'm always in pain, but there are so many times through my day that I'm feeling at least a little of something - stinging, stiffness, soreness, twitching, buzzing (yeah, it's like electricity and can be really annoying). Probably after the first two months I started blocking out what I was feeling at least part of the time. It just feels like me and I don't always realize it's there.

The reason the doctor decided to give me the injection was because even though I was starting to get better, it was so gradual he wanted to speed up the process. He also wanted to see if the SI joint is really the source of the problem; I should respond to the injection if it is. At the same time, my physical therapist tells me I'm such an unusual case symptomatically that what normally helps others may not work for me. She still feels fairly convinced the SI joint is the source of the trouble. It's hard not to agree w/ her because of how she examines me and can tell me exactly how I'm misaligned. Sometimes her treatments in the office help and sometime they just aggravate me more. It just depends, I'm not sure on what. She says it'll take a lot of work and time for my body to stabilize. I have to make it happen by strengthening all the supporting muscles. So far I'm on board to do what I think will help in the long run but there are times I question if we're on the right track. We'll see how things pan out and hopefully I'll have a better sense of things soon.

injection

Today I had my SI joint injection, along w/ an injection in the adjoining muscle above it that is my "trigger point." The procedure was like going to the dentist. I received two numbing needles, then the actual injections. The doctor had an x-ray set up so he could see exactly where he was going. It lasted about 10 - 15 minutes. He showed me the x-ray then sent it home w/ me. The dye leaked beyond the joint which could indicate a torn ligament but there's no clear way of diagnosing that, just something to be aware of and follow. It could also be explained by other factors.

Time will tell if this helps my leg. Today I can do normal activity but no driving or anything strenuous. I don't have any pain. The numbness is wearing off and I have a slight ache in the muscle area. I can ice it today if it gets bad.

I've had a bad lower GI problem the past week which I'm trying to help by reducing my intake of iron (it's actually not constipating but the opposite). I called my neurologist Monday since she's the one who prescribed the iron but she was out of the office. Knowing I had this injection coming up, I went ahead and reduced the amount and will check in with her later. If everything gets back to normal on its own I may be able to resume the full course.

Dave found out that the inflammation in his bowel has increased from a blood test he had done. This is not good news, since he's been trying Cymzia and has had enough that it should have helped by now. I guess you could say we're still in the limping along through life mode.

Samantha was sad

Samantha was sad after school today. Why? Because they set the butterflies free. For the past couple weeks, they've watched them grow as caterpillars, build cocoons, and turn into beautiful butterflies.

I had a little talk with Samantha about how life is always changing. The butterflies teach us this. Change can be hard. The butterflies were probably happy to be set free, or at least oblivious, but the children they left behind had to say good-bye. There was a simple attachment that had to be broken.













And such is life. We make attachments and then have to let them go. Things change. Change has its good and bad sides. My firstborn will soon be a high school graduate. A very very good thing in light of all he's been through. But also a hard thing. To say good-bye in a more formal sense to childhood even though he's technically and maturity-wise an adult already. There's that push/pull, push/pull dynamic to everything in life.

Attachment is a good thing. I know this in more ways than one as an adoptive mom. We all need it to survive. But attachment and change are a recipe for pain. Is that where I should end? Of course not. Something is permanent. Our hearts are made to long for it. God, His kingdom, His people, and eternity. So as someone said, (and because I'm not as educated as I should be I don't know who), "the only thing that stays the same is change itself", is only true for the temporal.

random entry

I have nothing much in mind to say, just lots of time to say it since I'm sitting in clinic waiting for Ethan. My SI joint is bothering me so I have to sit in a somewhat comfortable position I've found and type away. I did strengthening exercises at home this morning, plus I'm trying to get away w/ wearing a different pair of shoes than normal - both are probably causing more discomfort.

I think I forgot how intense plain old normal life can be, without the extra health issues. This week our sump pump failed as well as the backup battery pack. We didn't have a lot of major "flooding" but in the end still have to have carpet restoration with insurance kicking in a part of the cost. Ethan's room is very important to keep dry because it's risky for him to be exposed to mold.

A friend of mine asked me what I'll do next year when all the kids are in school. That's where this line of thought about the intensity of normal life comes from. This past year, there were so many things that didn't get done at all or we paid other people to do or had volunteer help just so we could function. Someone happened to see the outside of our house yesterday and pointed out that we need to replace the extensions on the gutter drains to keep the water away from the house. When is that going to fit into life along with the million and one other things that need attention? My main "extra" focus this month has been Ethan's upcoming graduation and working on details for his freshman year at ISU. There's also Katrina's school, taking care of Samantha, doing the housework I don't pay to get done, cooking, driving girls to lessons, and multiple other things. And Dave is swamped w/ his extra responsibilities at work and trips to Memphis.

But next year when I have more "free time" what will I do with myself? It would be nice to shop more economically for one, something I've wanted to do for years. I clip coupons and take advantage of sales at the grocery store, but don't have time to shop around. It would be nice to get back into crafts or more sophisticated cooking. The kids (and Dad) would love it if I did some baking and made more use of the bread machine they just gave me. I'd like to volunteer at both the girls' schools. I'd enjoy pursuing long-term interests w/ tutoring ESL and taking advantage of adoption/pro-life opportunities. I'd enjoy being able to participate in St. Jude and cancer awareness programs.

I know I'll need to continue with my health care and have an exercise program. I hope I can start playing keyboard and attend functions at church again, esp. in women's ministires. I'm missing their retreat this weekend and haven't attended the weekly Bible Study all year. We haven't been involved in attending, hosting or leading a small group in a long time.

There are so many things to do! God-willing I'll be able to manage even just a few.

Well that's my random entry for today.

Health Update

I am "managing" I guess you could say. It would be nice to feel totally normal but movement of any kind below my waist triggers my symptoms. When I wake up in the morning, I feel no pain. When I settle in for the night, I usually feel fine. When I sit down to rest, it's sometimes challenging to find a comfortable position but I can almost always get relief. I bought a new recliner rocker that fits my small frame and it's made things more bearable.

When I'm mobile, my leg starts to ache, burn, or stiffen. The SI joint in my lower back sometimes bothers me depending on my position. But I'm starting to figure out what I can do to minimize the discomfort. I called the doctor a few weeks ago about taking a medication that targets nerve pain - the generic form of Neurontin called Gabapentin. I've known about it for a long time because Ethan's been taking it, but hesitated to ask for it because I wasn't sure what effect it would have on me, making me extra tired or dizzy. But now since I've increased my strengthening routine for physical therapy, I've decided I should try it. I want to do the exercises in the hope they will give me long term stability but they really aggravate my symptoms. I try to do most of them in the evening when I can rest, like I'm doing now. The Gabapentin is definitely helping and only makes me a little tired and dazed once in awhile; I may eventually ask for a higher dose because it's taking off the edge but not removing all the discomfort.

The other thing I have that helps is a steroid cream for my SI joint. It works well. After a physical therapy appointment, I get a 24 hour patch that works the same way. I'm also still wearing my shoes all day and wearing the belt just above my hips. Another part of my routine includes doing correcting exercises after I shower in the morning; I start to feel worse leading up to that point but then I'm good to go for awhile.

As far as the big picture goes, I'm still able to accomplish a lot through my days, it's just a matter of timing. The kitchen and house get put in order, the wash gets done, Katrina's schooling continues, Samantha's plethora of needs get attended to, the girls get transported to their extra activities, dinner gets on the table, errands get run, other details for the boys get taken care of including chemo, college entrance requirements, etc. etc. We've had to make some changes including Dave helping me get groceries, hiring a house cleaner, pacing myself and unfortunately giving up some of my former life for awhile - playing keyboard for church, attending women's Bible study, small group, entertaining, and volunteering my services for various ministries.

I've realized I've gained other things to replace what I've given up. I'm writing again, which is something I haven't done in ages. Maybe I'll play my piano again one of these days which I haven't touched in ages. I've listened to some awesome sermons on my Ipod and discovered more worship tunes that have nourished my soul.

I was sharing with a friend early in Ethan's illness how hard it was for me to see him lose so much. Her son is Ethan's age and they're both graduating this year. Her son's life has been very full, including being student council president for two years at a very large school. My friend said something truly profound, that when God takes something away He often replaces it with something else. And you know what, I've seen that materialize, especially with Ethan's Make a Wish gift. Who would have thought Ethan and Bryan could do what they love to do right here at home, making awesome videos, recording songs, etc. And the same is true for me. God is replacing some of what I've lost with other good things. This entry is getting too long so I won't elaborate, but I'm thankful that I've been blessed the way I have.

My Philosophy on Healing

Whew, I guess I'm taking up a big topic today. Actually it's rather simple. I've come to form this view over many years, and am open to God revising it whenever and however He wishes.

My view basically boils down to this: God is the creator, and He is the healer of broken bodies. This healing can take place in many ways. We may put some in the "miracle" category, but all healing is by God alone through whatever means and timing He chooses. His children can expect total healing in some form and can confidently pray and trust that He will answer. As we approach Easter, we must acknowledge that the resurrection is the ultimate form of healing, but we can expect significant healing in this world as well.

Now I'd like to share some of my experiences and what God has taught me through them. When Dave was first diagnosed with Crohn's, we prayed for God's supernatural intervention before he went through with the surgery. I was scheduled to sing at church during this time and chose a song titled "He is Able." Before I sang, I dedicated the song to Dave. We were trusting God for healing, and because the surgery ended up being necessary, we embraced God's sovereign will that although He was able, He did not remove the Crohn's without the help of the surgeons. We believe He guided the surgeon's hands and spared Dave's life; Dave went into total remission for six years following. Dave grew spiritually as the surgery loomed over him, being confronted with his mortality and gaining a greater appreciation for the blessings in His life, first and foremost our family.

When Crohn's reared its ugly head again six years later, Dave was able to consider other treatments; the first time he had no other options because his urinary tract was compromised. Aside from Prednisone, which is a steroid that is problematic long-term, none of the treatments worked. He even had an allergic reaction to one. Dave had a second surgery, but it did not bring about the desired and expected result. During this time I adopted the "manna" principle for healing. Dave's been prayed over and anointed with oil by the elders, and I believe his health is a daily step of faith. We trust God to SUSTAIN him and give him what he needs for each day. God has faithfully enabled Dave to have an amazing influence in our family, at our church, on campus, and in our state, all while dealing with the ups and downs of his health. We're still praying for even more and constantly seeking out new treatments, some of them "non-medical." It's been a long interesting journey and the manna keeps coming.

Something just came to mind which I'll share. My mother lost her oldest sibling to illness - there were several siblings at the time and my mother was not yet conceived. My grandparents believed that taking their child to the doctor negated allowing God to directly heal her (I'm pretty sure money was partly involved as well). Unfortunately they lost her. They did end up taking her to the doctor, but it was too late. I could be tempted to allow this to shape my thinking and not trust God enough for supernatural healing. I've tried to be careful about that. I greatly respect my grandparents and know they tried to exercise their faith as God led them. The main thing is that their eyes were on the Lord and that's what really counts.

So to wrap up, as things stand now, I am trusting God to bring about a surgery-free healing and/or sustaining of Dave and also a restoring of Ethan to good health. I view Dave's careful maintenance of his weight and responding to flare-ups w/ dietary restrictions and rest as his "manna", along with continually seeking out other medical options. I view Ethan's chemo as his "manna". For myself, I'm seeking God's help in making the right decisions and taking it one step at a time (both figuratively and literally). It's a process, and God will heal all of us as we walk in faith with Him. Ethan seems "healed" to me now, but we must keep going with the chemo. We must follow the protocol because God has ordained it for him. We know the people who are working with him and how much they've invested to keep him alive. They really care for every child they save. This is God's way of telling us that His hand is directly on Ethan through them, just as His hand was upon him through the elders in February '09 in Peoria.

Similarly, my physical therapist is a Christian, has SI joint dysfunction herself, and is probably one of the few if not the only specialist in women's pelvic health in our town. I too have received anointing prayer, not for this most recent illness, but for a former one at which time I "just happened" to be teaching on a healing-related passage in Mark for our women's ministry at church. My beliefs stem first and foremost from God's Word and then seeing how He works in the lives of those who trust Him.

Allow me to introduce myself part #2

So picking up where I left off, Dave and I got married in 1985 and I took a job as a secretary in the development office of a Christian K-12 school while Dave finished his degree and then landed a corporate job several months later. After two years we moved into our first home, an old duplex - very spacious but in need of a lot of upgrades. We replaced the heating system, plumbing, and roof, along with doing major improvements on the kitchen, bathroom, walls, and woodwork.

In the late 80's I felt called to pursue a new degree that would enable me to teach ESL - both Dave and myself were being drawn to work with international students. I was able to start teaching while still completing my degree. Wouldn't you know, the week I was to take my final comprehensive exam I found out I was pregnant with Ethan. What timing! I continued teaching through my pregnancy, then took a break after he was born and later went back part-time. I think I ended up teaching about three years total. It was a wonderful experience. I loved working with many nationalities at all different proficiency levels, and one of the best parts was that we were able to house students from the program on our 3rd floor attic room with its own bath.

To backtrack a little, earlier in our marriage, when we were praying about our future, God put China on our hearts. I made a point of tutoring in Chinatown to fulfill a requirement for my coursework. We were open to God leading us to China for short or long-term missions. After I started working with international students and became a mom, I thought international adoption might be another way to live out the desires God had implanted in me.

Fast forward through Bryan and Katrina's birth, when I became a full-time mom. At this time Dave and I were planning for his career change into academia and he was diagnosed with Crohn's, which made it apparent we weren't being called overseas. For those of you who don't know, he had one surgery during those years and was in remission for six years following. (He's had a second surgery since we've been in Illinois).

When we first moved, we made the decision to send Ethan to public kindergarten. Three years later, when Ethan was entering 3rd and Bryan 1st, we decided to home-school. Even though I was convinced this was God's leading, I really wrestled with the decision because of all it would mean, the extra responsibility and changes it would bring. But an even more amazing thing happened while I was still going through that process. One Sunday at church, God woke me up and renewed the latent desire I'd had for international adoption. Here I was debating whether to take the plunge into home-schooling and God said "You think THAT'S a sacrifice, what about taking an even MORE dramatic step that will require an even bigger life change?" Wow, I was blown away.

Backtrack a little to what God was doing in the more public specter in bringing us to Illinois. We really felt called to campus ministry of some kind. The doors God opened for us were assisting in a home-based ministry to internationals, Dave being the faculty adviser to IVCF and speaking occasionally to their large groups, and Dave co-leading the Faculty Christian Fellowship. Dave was also able to lead a Bible Study with internationals, mostly who were Chinese! This was not because he went out looking for them, but rather because he was approached by a Chinese Econ student our family hosted thru a secular campus program, and that student's interest led to more students' involvement (most of whom were also Econ students).

Fast-forwarding again, we adopted Samantha and the latent dream became a reality. Our whole family went to China to bring her home, what an awesome experience. Our kids keep talking about wanting to go back for a visit.

I'm going to stop here because the rest of my story is "old news." This past year has definitely been the most life-changing of all, with Ethan's leukemia and my chronic pain condition. Life is hard, but God is good. My weakness is the means by which He can display His strength and power.

As Samantha and I were talking about the big scary ocean the other day, I told her the waves remind me of God's power. I sang "My God is so big, so strong and so mighty" with her as we left the beach and were walking to our hotel. I reminded her of the Bible story where Jesus calmed the waves. It was satisfying to hear her sing and to dialogue with her about spiritual things. All the pain is worth the gain if in the end we're focused on the Lord and His greatness.

Allow me to introduce myself

A few people have responded to my blog with the comment that it's helping them to get to know me better. I thought I'd follow that theme today by telling you a little more about my life. I hope I can highlight the most significant things without getting too rambly. One thing we learned as journalism majors was "brevity, brevity, brevity." We'll see how it goes.

I was born into a Christian family. I have three older brothers. We lived in the country and moved a few times depending on the pastorate my father had at the time, sometimes full-time and sometimes part-time. Our denomination was similar to the Mennonites who back then were pretty conservative. My mother's father grew up Amish and became a dynamic preacher after he left the Amish because of his claim to salvation. Both my grandmothers wore head coverings and were considered "plain." My own parents veered away from some of the older traditions but were still strong supporters of a simple lifestyle, mostly out of belief and partly out of necessity. I always had plenty growing up, but we were never indulgent. I'm thankful for being rooted in simplicity and continue to weigh all the choices we make in modernity. One example is TV - I never had a TV growing up but have just recently acquired a satellite dish service. Hmmm. We are trying to be careful with how we use it. We're still avoiding a large screen or HDTV, although anything else is almost impossible to find at stores anymore.

I had all the benefits of growing up a country girl, and as a teen had lots of fun in high school with extra-curriculars. By the way I was an A student so I hung out with the brains. My high school resume includes one year of track where I rarely qualified to compete (WHY did a short person like myself choose long jump???!!!), then three years of field hockey, choir and a smaller ladies' choral group called the Nine Sharps (no kidding), and both small drama productions and big musicals. I never had a major role in theater but enjoyed the parts I had. Contrary to my sons' opinions, musicals are a blast. Maybe not to watch, but to do - YES. (They're planning to do an anti-musical video which will be hilarious I'm sure.)

Fast forward. Most of you know a lot about me already so this will be really quick. I went to a Christian college for two years then transferred to a big secular university that had a small suburban campus. I majored in journalism/public relations. I met Dave through Inter-Varsity Christian Fellowship. We both had come out of hard relationships and were just looking for friendship at first. But the trip to Wendy's was the turning point. He sat down at another table just to be his silly self, then came over and asked me, "is this seat taken?". About two seconds later after he sat down, he asked me, "will you marry me?". I quickly responded "give me three good reasons why". He then gave me three lame reasons and I asked for seven more. Seven more lame reasons, but then a serious conversation about what we'd like in a mate and both of us felt "the chemistry" so to say at that point. The next day was WEIRDDDDD!!! But we finally took the plunge after much fear and trepidation that our friendship would be ruined and we are still best friends to this day. I knew he was the one for me when he showed his true romanticism through mathematics. He wrote me a cute little note saying you plus me equals love along with other similar equations. He used to sing songs to me like "I'm standing at the lightpost of the corner of the street when a pretty little lady walks by, oh me, oh my..."

It's interesting that I'm writing about this while I'm at the beach. The beach is Dave's ideal vacation spot and we've spent many wonderful hours here together. One that stands out in my mind is before we were married. We were strolling along the sand in the evening and my silly guy suddenly turned serious on the subject of marriage (this was before we got engaged). He told me that he didn't know if he could love someone the way his parents loved each other. I think he was wrestling with his feelings for me, not sure what to make of them. I have no doubt now that his love for me equals or surpasses the love he saw modeled growing up.

Well this may be TMI but when I'm writing I try to be free with where my thoughts lead. Because I've written so much already, I'll sign off and do a part two soon. Stay posted...

Yes and Amen

This morning our dear Pastor Bob Smart preached another excellent sermon on Daniel. For those of you who'd like to hear his powerful Christ-centered handling of the Word, you can go to http://www.christchurchpca.org/ and download his podcasts.

I say Yes and Amen to his point about God's love. In Daniel Chapter 10, Daniel mourned for three weeks (v.2) about a great war that was to come. His vision terrified and overwhelmed him so he had no strength left (v.9). He was interacting w/ a messenger about the revelation and several times the messenger called him "you who are highly esteemed"(NIV version). In some other versions this same phrase is translated "you who are loved."

Pastor Bob said our experience often leads us to question God's love, but that God's Word is our greater authority. We lose our identity for a time, feel like a stranger or orphan, but there's no question we are loved - His Word and the way He works in our hearts give us all the evidence we need.

It's hard to process God's personal love for us in the midst of pain. Sometimes if it's an accumulative thing over a period of years, we may feel like we're being picked on or bullied or maybe just forgotten. Yet we know that's not God's character. There has to be another reality at work. Rather than saying "Why me" it's better to say "why NOT me". If God truly loves me and is allowing this to happen, the conclusion I must come to is that He wants to love me through it and fulfill His perfect will for me in it. We may be tempted to think God is withdrawing His love for a time, but as Stephen Curtis Chapman reminds us we are ALWAYS being loved, "right now at this very moment", no matter what. If we're God's child His love is a constant. There are times when He may be silent, but that doesn't remove His love. We may be in a time of testing, but that's just PROOF of His love. Everything comes back to love. The cross proves it, and as we see the weightiness of the cross and look to the One who suffered for us, we begin to grasp how our own suffering has meaning. He's calling us to give of ourselves, just as He did. To put our own agenda on hold and let Him grow us up, so to speak.

So yes and amen to the final authority of the Word - God is continually loving us through each step of our journey.

Time for something serious

Normally I'll keep things more light-hearted, but today I want to share some of the realities I've had to face in my journey. In my last post, I shared about Paul and his thorn. I've been thinking about him and his perspective on life, shaped by suffering from His first blinding encounter with Christ. I hope I don't ever have to face all he faced, but knowing what he went through helps me as I look at some of my own hardships.

Without sounding negative, I just want to be honest about where I've been since I turned forty. On my fortieth birthday (I'm now 46), I made an intercontinental call and talked with a nanny who was caring for Samantha. What an awesome experience that was. Then a month later, I held her in my arms. She was so resistant to so many things I tried to do for her as a mom because of her sensory processing problems, her developmental delays, and her strong will. I just wanted to love her and parent her well, but things were and are still very hard at times. From what I've heard, some of her struggles are normal, and some are a little more challenging than other adoptive families' experiences. I also know there are lots of birth kids that face similar challenges. One friend I've known for years had similar difficulties with her son, and now he's doing very well, so that's an encouragement to me. I've never doubted Samantha belonged in our family but it's been more draining on me than I ever expected.

Along with that, I've had some major hormonal changes the past couple years that have required medical attention, and since emotional PMS has always affected me, I've also struggled to keep my emotions in check. Enough said about that.

When Ethan got sick last year, I was really worried about him prior to diagnosis, then afterward there was still a lot of worry about his health but along with that such a feeling of loss. Knowing his life was on hold, my mother's heart was just crushed. Our firstborn had almost made it to being fully independent, and then it all changed. So much good came out of it though. Ethan and I and Dave were able to connect in ways that I will treasure forever, and I'm thankful at least for that part, that our relationship became so much stronger.

Is this all leading somewhere? Yes. Back to this long journey and how I'm gaining more and more of Paul's perspective through it. We've had a rough year, especially in April and then again in June with Ethan's health crises. I was starting to experience some more extreme anxiety through those times. Then when my own health took a nosedive, I went through another period of major anxiety. There was a point when I thought MS was a possibility, but even though that was frightening, some of the other things I got tested for could have been even more serious. I had swelling in my ankle and had an ultrasound and an ex-ray to see if there was a bigger problem there. The spine MRI could have shown a tumor. The EMG could have shown evidence of ALS (Lou Gehrig's). It was overwhelming to think about with all the other things leading up to it. It was especially overwhelming not to be able to fulfill my role and identity, in caring for my family.

This is getting long so let me just close by saying I'm doing okay. It's been rough, but with the help of family, friends, caring doctors, calming medications, negative test results, and God's faithfulness each and every day I've come to say along with Paul what can happen to me apart from God's love? As long as I know He's the one running my life, I don't need to fear the future.

What's in a Shoe

I have never been overly extravagant when it comes to shoes. For the most part I prefer comfort to style, but a few years back I decided since comfortable heels could be found that suited me, it would make sense to use them to give me a couple inches, esp. with the height differentiation between myself and Dave. Then I fell in love with the bootleg jean look which along with the heels gives me more "presence".

Not only this, we've had a rule since we moved into our new house thirteen years ago that we'd take off our shoes when coming indoors. That rule has held even though our carpets and floors are very well worn now and it doesn't really matter.

For the past month, I've been stuck wearing athletic shoes all day, outside and inside, as part of my therapy. I've gotten used to it but I miss running around in socks and wearing more stylish shoes when I go out. Oh well, my body knows better and thanks me for those shoes, without them my leg immediately starts its thing. Unbelievable. All because of one tiny heel lift and solid arch support that keeps me aligned.

God's design of the body is truly remarkable. Everything affects everything else. If one part isn't doing its job, it leads to one problem after another. I'm doing what I know to do to get things working the way they're supposed to again, but sometimes I struggle between being a good steward of my body and accepting the "thorns" that will inevitably come. Paul didn't spend all his time and energy on seeking a cure, apart from the Lord Himself; rather He focused on doing the business of the kingdom and allowed his thorn to be a means for God to display His power in weakness.

And so, at the end of the day, when I've had it with my shoes and I'm tired of having to position my body properly, when I just want to kick back and be myself again, I block out the doggone pain and say "God knows". He knows where I've been with my strong-willed Samantha, He knows how I've tried to avoid the stairs but just can't because I need to check Katrina's schoolwork or do wash, He knows the family needs a good solid meal, He knows Bryan needs an errand run, He knows Ethan needs another trip to Peoria, and He knows that Dave needs me to faithfully love and support him. God knows. He's not putting pressure on me to be something I can't be, and He'll heal me if He chooses, and in the meantime, I'll do what I can but leave the rest up to Him.

Fun Family Time

One of the things I wanted to talk about at some point is the joy of family life. Last night we had a great dinner together. Nothing spectacular, but good conversation with Samantha being fairly "appropriate" with her input and not talking over us the whole time, which has been a problem we've frequently had with her. I don't think we talked about any grandiose topic, but that's precisely my point, that we just enjoyed being together. This is something I think I wouldn't be as thankful for if business had continued as usual without the situation with Ethan or my own health struggles.














Families go through ups and downs with how they relate to each other. We have our share of disagreements, misunderstandings, snapping at each other and all that "stuff". We're sinners, it goes with the territory. But when the rubber meets the road, we make sure we're there for each other. With teenagers coming into their own, there's a more distinct line being drawn between one generation vs. another, but we try to major on the majors and not get caught up in the minors. We know how radically things can change in an instant and don't want to waste time fretting over things that will all eventually pass.

I want my children to be responsible and all that stuff. I've seen all of them grow incredibly in that way this past year. So when there are the minors of clutter piling up around, I remind myself that Ethan is being very productive in school, taking his meds independently (and there are LOTS of them), participating in youth group and a couple Bible studies with friends and a mentor, running his own video business, and finding time to have meaningful relationships with his peers. I remind myself that Bryan is producing original music, leading worship at youth group, being a witness at school, maintaining a near perfect GPA, teaching guitar, and doing Bible study with friends and a mentor, and so on. Katrina and Samantha are each developing in so many ways with their various activities, ice skating, piano, swimming, ballet, to name a few. I'm out of time but the point is it's great to watch them do their thing and make the most of the precious time they have.

It's Okay

I'm learning to say it's okay to myself a lot more. If you know me well, you know I have perfectionist tendencies. That can be a good thing at times - I wouldn't want my roof caving in because the roofer decided it didn't really matter if he was precise. But sometimes things don't require perfection, and that's when it's time to say it's okay. First, my health is one of those things. Right now I can't have a perfect body (which I hope you know I don't mean in the cosmetic sense)and I've got to say okay, this is the way I'm going to feel. If I try to do anything physical, I'm going to have symptoms. That's just the facts, pure and simple. So what do I do, I push through till I've had enough and then try to find a comfortable position to rest. Right now I'm sitting on my bed with a lumbar pillow behind me and it feels pretty good. Earlier this evening I went to church and couldn't stay standing for the whole song set. I got what I guess I could call my "twisty" symptom when the inside of my leg feels like someone's ringing it out like a dishrag, yeah, ouch. But when I sat down I was fine. Back to the topic at hand - being okay with imperfection. The second main thing I've had to say it's okay about is my daughter Samantha's behavior. She is really something. Today she was having a loud screaming, crying episode which fortunately she doesn't have much anymore (thankfully). But there are so many other things that aren't really in that category that go against my perfectionist mindset. She still stands up on her chair sometimes during meals, she wants to dress and fix her hair in socially unacceptable ways, she splashes too much in the bath, etc. etc. She is now seven and I KNOW each of my other three were better "behaved" by her age, but who's comparing? Samantha is Samantha and I'm okay with her for now. I can't help but hope that someday she'll get with the program, and it won't be because of me. Believe me, I've tried.

Intro

Welcome to my blog. Below is my first entry, including the background of most of what I'll be writing about and two drafts I wrote before I started this site. It's a long one, but I don't expect my updates will be as wordy. Just wanted to record more details so things will make sense. By the way, pay no attention to the recorded times of my posts - I wasn't up that early! It's now around 9:30 Central Time.

Background and Previous Drafts

Background Story, Feb. ‘09
One day in September ‘08, I was walking into Target with my 18 yr old son Ethan and commented that my left calf had been bothering me for a couple days. Now you need to know that Ethan was no stranger to unexplained pain – he himself had three weeks of pain all over his body the previous winter when it was finally discovered that he had Acute Lymphoblastic Leukemia. I was merely informing him of my problem for two reasons: one- I couldn’t walk very fast so he’d need to take it easy with me, and two- I wanted him to know I sympathized in a very small way with some of his ongoing battle with his disease. Apart from that, I dismissed the symptom as simple fluid buildup that I’ve often had. But within a week or two, my whole leg started going haywire including giving out on me one night, and eventually I started feeling more strange symptoms that indicated a possible neurological disease or disorder. I made several doctor’s trips and finally ended up in the ER one evening when my opposite leg was overactive with electrical pulses shooting through it, making my toes feel like they were being repeatedly shocked.

I had a brain MRI to check for MS, which came back negative, and then had some blood tests that the neurologist on call ordered. The ER doctor noted that I was experiencing hypo reflexia, sent me home with a sedative, and asked me to follow up with the neurologist. My symptoms settled down some but my left leg continued to experience extreme stiffness, burning, twitching, weakness, and a little numbness. Over the course of the next couple months, I had more tests on my spine and an EMG of my left leg and arm, along with adding medications to regulate my nervous system and ease my muscles. All tests continued to be negative. I switched to the neurologist that was in the same group with my primary physician and she ordered more blood work, a magnesium supplement, another MRI, and physical therapy to address any back or pelvic issues that might be affecting my nerves. The blood work showed I had extremely low iron which most likely indicated the increased twitching through my entire body, but didn’t really explain my other symptoms.

I have continued to supplement with iron and have about another month until that’s expected to reach the targeted level. The physical therapist gave me a resting exercise which only aggravated my leg more, so the neurologist wanted me to stop. I then asked my primary doctor for a referral to an orthopedic specialist to check my pelvis, and he in turn sent me back to physical therapy – this time with someone who specializes in lumbopelvic and women’s health issues. Through several tests she confirmed that I have SI joint dysfunction on the left side – the main joint that operates inside the pelvis and connects to the lower back, hip, and groin area.

The most obvious source of this kind of problem would be an injury, but in my case there are other equally plausible reasons. They include extended sitting in waiting rooms during my son’s treatment, extended driving to both Memphis and Peoria, and hormonal changes that trigger female pelvic symptoms. The therapy I’m now receiving includes wearing a belt around my pelvis, wearing a heel lift in my right shoe to try to correct asymmetry, using steroid patches and creams, using a special seat cushion, and doing a series of exercises to help put my joint back into position when it goes out along with strengthening the ligaments and muscles around it so I’ll eventually be more stable.


First entry: Feb. 18, 2009
So it’s been since September that my body has started failing and interfering with pretty much every aspect of my daily life. Today is Feb. 18 and I just reviewed my history for the past month – I’ve been to Carle Clinic eight times for the following – blood work, two separate specialist visits, and four PT visits. In this same month, I’ve also taken Ethan on a four day trip to Memphis, along with five partial day trips to Peoria. In one month, I’ve been in doctor’s offices a total of seventeen days, eight for myself and nine for Ethan. Katrina has been on her own a lot with school, Samantha is getting less attention than I’d like to give, housework is piling up even though I have an outside cleaning service twice a month, and running life in general is chaotic with the kids’ transportation and activities, meals, errands, car repairs, a long overdue piano tuning and fireplace repair, a broken microwave, snow etc. Many of these things would be challenging in their own right without the extra health-related demands.

This may sound like a complaint, actually it’s not. I have much to be thankful for, especially God’s grace in carrying me through each day and seeing how flexible I can be even when it goes against my general nature. What I want to do with this journaling exercise is focus on several things:

-God’s goodness to us all the time: Stephen Curtis Chapman’s line is very fitting: “You are being loved, right now at this very moment, you are being loved – there’s a song being sung over you by the one who breathed life into you…”
-The incredible way God has designed our bodies to function and how it testifies to His perfection in all things
-The importance of details and following God’s special guidance through a long-term, no easy-fix situation
-The importance of already existing community for support as well as God’s amazing placement of new people in your life who help in the healing process
-The wonder of everyday life and the sheer JOY of family
-The way pain disrupts your identity and brings about a new identity that is clearly God’s intention for you, not of your own making
- The power play of emotions – they absolutely CANNOT dictate your perception of truth, and yet they CAN be valuable in coming to terms with who you are and discovering the truth you so desperately need; you can move from unhealthy lie-based emotions to equally truth-based healthy emotions rather than settling for numbness and/or extreme debilitating sorrow.


Second Entry: Feb. 22
This morning I asked Dave to do a “leg pull” – while I’m lying on my stomach he pulls my bad leg, then I turn over and he pulls my good leg. The therapist says this is my last resort to do when I can’t get things into position on my own. This morning I didn’t even try a self correction because I knew it wouldn’t work. My leg was feeling around a 7 or 8 for pain – I got woken up by Samantha at 5:30 AM because of a fever she’s had for three days now, it’s been in the 104.5 range since yesterday afternoon. So having to get out of bed and attend to her set me off on the wrong “leg” even with lots of help from Dave.

When I rate my pain, what I’m referring to is more the severity of my discomfort. The worst actual pain I’ve ever experienced was in childbirth (no surprise there). I’ve heard kidney stones are pretty painful although I’ve never had one. Dave experienced incredible pain when he woke up from his first abdominal surgery without the pain block he was supposed to get. Ethan had more of a suffocating kind of pain when his tumor was pressing on his esophagus. My pain is different – it’s mainly stiffness, with varying degrees of burning, tingling, and twitching.

The reason it’s hard to attend to Samantha (and do so many household tasks) is because it requires me to move in ways that aggravate my condition. These include twisting, bending, and reaching. In addition to these movements, I’m supposed to avoid certain activities as much as possible – going up and down stairs, pushing a grocery cart, lifting, vacuuming, basically anything that requires a little extra effort.

Here’s what I’m learning through this – to see people in a different way and have compassion on them. So many people are physically challenged; I notice them everywhere I go. So many women have a limp, use a walker or struggle in some way, not to mention all the men and children out there that have problems. Along with compassion, I have a greater appreciation for the way many people learn to function even though their bodies are failing in some way. The first person I think of is Dave, who has lived with Crohn’s for around fifteen years. Then of course there’s Ethan, who’s continued to plow through chemo treatments and makes the most of the times he’s feeling well. I also think of my sister-in-law Chris, who’s had two knee replacements and some problems with her foot and ankle recently. All three of these individuals have continued to live very productive and other-centered lives even though they have major health issues. I also have a greater appreciation for those who care for people that cannot continue to function without help. My grandmother was 90 pounds and took care of my grandfather who was close to 200 after he had a stroke, leaving him partially paralyzed and speech-impaired. Many people are living this reality day in and day out, either struggling with their own frailty or caring for someone who is. It’s amazing to see the God-given strength that surfaces when people are faced with extreme hardship.