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.