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.