Friday, April 17, 2015

Coming out as a Spoonie

Two blog posts/articles this week caught my eye. In the Huffington Post, Sophie Cowley comes out as a "spoonie". As she explains in her article, a "spoonie" is someone with chronic illness. The term comes from this article by Christine Miserandino in which she uses spoons as a unit to measure energy or ability to carry out everyday tasks.  

Those of us with chronic, invisible illnesses often hear things like, "but you don't look sick." Coming out as a "spoonie" feels kind of risky. It can alter the dynamics of a relationship. I completely understand where she's coming from.

The other post that really resonated with me this week was this one from Samantha at Defeating the Dragons. Samantha talks about overdoing it so that she can be with her friends and then paying for it with increased pain later. 

She also talks about the Christian culture issues with pain - that we are to endure suffering and that pain is sanctifying. But, she realizes, quite correctly, that our bodies are gifts from God and that we need to care for ourselves. If that means limiting our activities, then that's OK. (And I realize that this one paragraph could be unpacked into a week's worth of blogging, but not tonight.)

Which brings me to my week. On Tuesday, I felt pretty well and it was a gorgeous day, so I decided that I'd take a walk. Two miles. That shouldn't be a big deal, right? I mean, I'd been walking a good mile or so on the treadmill a few times a week. But, the treadmill is flat. And Weyauwega isn't. About a mile away from home, I realized that it may not have been the best choice in the world. And, when I was almost home and a nice older man stopped and offered to take me the rest of the way home because my cheeks were so red, I knew I had overdone it.

The migraine later that night proved it. I clearly did not have enough spoons for a two mile walk. Not after a sedentary winter. But, I was determined that I did. Why? Because I was supposed to. I have migraines, after all. Not cancer or something terminal. But, migraines and fibromyalgia are real illnesses. And sometimes it takes doing something stupid like making them flare to validate that. Unfortunately, it made me completely useless for a day and a half.

So, if you are a fellow "spoonie", welcome! Let's journey along the "spoonie" journey together. We may be in pain, but we can validate each other and support each other. We don't have to be "more" than we are. God knows us and loves us where we are right now.

Sunday, April 12, 2015

Lagniappe April 12, 2015

Image result for lagniappe image
It's been a rough week on the headache front, but life has continued on despite the migraines.

  • Wild Man and PWM had Spring Break over last Thursday, Friday, and Monday. Rosie Girl came home for the weekend, so we got to have a family weekend. I had a migraine on Saturday, so I missed Easter Sunday church, but we did manage a nice dinner on Sunday.
  • Wild Man is completely immersed in rehearsals for Pippin. The show is in two weeks, and he has the lead.
  • Rosie Girl is taking a class in jazz arranging which she really enjoys. She'll be taking jazz piano lessons over the summer and playing in a jazz ensemble next semester. This is completely new ground for her, and I'm excited for her.
  • Wild Man went to his Junior Prom last night. He and his girlfriend made a gorgeous couple and had a great time.
  • We've watched several movies over the last few weeks:
    • The Imitation Game - Good movie about Turing and how he led the team that broke the Enigma machine during WWII.
    • Interstellar - I actually enjoyed this movie because there was far more about relationships than about all the "space-y" stuff. The movie is a story about a dystopian future where humans are looking to other star systems to colonize because of the damage done to Earth.
    • Annie - A very updated version of the classic musical. And it was fun and very good.
    • Whiplash - Another good movie, although PWM and I disagreed about whether or not we liked the ending. A college percussionist gets abusively mentored by his professor.
    • August Rush - Very good, but a little sappy. A very musical boy is trying to find his parents.
  • I'm trying to spruce up some parts of the house, so I ordered some towels and a couple of throw rugs. Now to try to keep the house a bit more straightened!
So, what's up in your part of the world?

Saturday, March 28, 2015

That's The Thing About Pain: It Demands to be Felt

That's The Thing About Pain. It Demands To Be Felt (John Green The Fault In Our Starts)

Before I had chronic pain, even though I was a physician, I had this naive idea that, at some point, you could ignore pain. I thought that it would become kind of like an annoying sound that you could just put in the back of your mind and still go on with life. After all, I didn't have very many chronic pain patients. Most of them went to pain specialists and I thought that with appropriate meds that the pain just became part of the things you didn't "see" anymore, like the stains on the rug or the mismatched towels.

I was totally wrong. And I totally apologize to anyone to whom I was less sensitive than I should have been. (Although, even though I didn't understand chronic pain, I did try to be as sympathetic as possible.) You see, John Green had it right. "Pain demands to be felt." And that doesn't matter if it is acute pain or chronic pain. We tend to see acute pain, like a broken bone or acute abdominal pain, as being somehow "more painful" than chronic pain, but they are really just different kinds of pain. Acute pain tends to be easier to treat, and, therefore, a little easier for physicians to deal with. As an MD, I found acute migraines to be much easier to handle than chronic migraines. Most acute migraines will respond to one of a given set of treatments. When the patient would feel better, I would send them home, and life would be good.

Chronic pain is a different story. It's still pain, but it's a different quality than acute pain. It can be as intense, but is usually a dull or throbbing kind of pain. And just like acute pain, it demands to be heard. That's what constantly amazes me. There's no way to ignore it. I use some distraction techniques like knitting and reading, although reading can make things worse when the headache is bad. (I think that's specific to migraines and not with all chronic pain.) Sometimes that helps. The medical literature suggests that exercise provides "happy chemicals" in the brains of those with chronic pain, so I decide to walk on the treadmill or outside.  Except that walking often makes the headache worse.

It's frustrating. Pain demands to be felt. Yes, I feel the pain of my headache. So, what now? God, are you trying to tell me something? I've been listening for the last 8 years? I'm still listening. Is this just supposed to be making me stronger? I'm not much stronger physically. It's hard to exercise when I'm always in pain. And I can't sleep till the sleeping meds kick in when my head aches at night. So, God, I think I need you to write down whatever it is that I'm supposed to be learning or getting out of this headache experience on a notepad and put it on my bedside table. You can put it right on top of the CPAP machine and I'll be sure to get it. Because I've been feeling the pain. And I could be done with it really soon. Just an FYI.

Friday, March 27, 2015

A Post About Laundry and Only Laundry

Laundry. It's my nemesis. I truly, truly, truly hate doing laundry. I have never enjoyed doing laundry. I think my problem is that there are so many steps to it: sort the clothes, take them to the basement, wash, dry, hang up or fold, put the clothes away, put the hampers away. I so often get stalled out at the hanging or folding stage. I'm usually so good about finishing tasks, but not laundry.

When I was working, PWM and I kind of shared laundry duty. There was always laundry being done by someone. It worked out pretty well. When I quit working, I kind of de facto took over the laundry, except when I have week-long migraines, which is every couple of months. This can be pretty inconvenient if you are someone in the family who values things like clean underwear. And, PWM, at least, does. So, he can be counted on to step in and get us through crunch times with my migraines.

I did come up with a very helpful solution to some of my laundry issues. And a few other things. I turned kid laundry responsibilities over to the kids. Rosie Girl was 11 and Wild Man was 8 when I quit working. Within about a year, I had taught them how to do their laundry. (Since we bought all washable clothes, there were no delicate clothes to worry about.) By the time they each had reached the age of 12, they were responsible for their own laundry. Since they took the responsibility of taking care of the clothes, they also had the right of not having me or PWM worrying about how they chose to store their clean clothes. We only required that the kids look and smell presentable. So, laundry taken care of and no arguments about clean rooms. (It also helped that we don't allow food and drink up in the bedrooms.)

There have been some interesting lessons learned over the years. Wild Man, in particular, has been up late sometimes on Saturday night to get his Sunday clothes clean if he is part of the Sunday morning worship team. He's getting better at thinking about this earlier in the day on Saturday.

Rosie Girl found that it was nice that she knew how to do laundry when she left for college. However, she also found that the 45 minute drive home was actually not that far to drive to do her clothes at home since she also got a home-cooked meal (usually) along with seeing the family.

I decided today, though, that, in addition to my usual LaundryPalooza for me and PWM, I would wash Wild Man's clothes because Solo and Ensemble is on Saturday and Wild Man has had rehearsal's for the school play and for S&E and we're planning to go to another's school's play tomorrow night. I felt kind of sorry for the kid. And I hadn't seen his dress clothes in a few weeks, so I doubted they had made it through his laundry rotation yet. He tends to operate on a "need it now" basis.

Since I'm not a great laundress, I already had some white clothes from last week to fold (bad Mama! bad Mama!). I went ahead and did my and PWM's clothes and then got Wild Man's clothes from assorted locations - primarily the floor of his room. I think the boy has a month's worth of T-shirts!! I had him sort through and give me any that he doesn't wear anymore and he only gave me two. Wow. He ended up having four loads of clothes. I have no clue if they were all dirty because he doesn't actually keep his clean clothes in his dresser, but, whatever. The clothes - they are clean!!

And while I'm expounding on laundry, let me tell you about my great plans for towels. Because I'm sure you have nothing better to do than read about me and my towel issues. First of all, we have a rather motley collection of towels in our house. We have a full (tiny, but full) bathroom downstairs and a half bathroom upstairs. Our bathroom is right by the front door and there is not enough storage space in the bathroom for our towels, so we have a bookcase in the front hallway with our towels and a few other bathroom items on it. So, basically, we use the side door. Because coming in to see our muddy floors and boot collections is still classier than seeing our motley towel collection and how much toilet paper we have at the moment.

I've always been a towel folder myself, but I saw something the other day that reminded me that some people roll their towels and they look nice and neat. So, I'm thinking of getting some metal baskets and putting on the bathroom wall above the laundry hamper and storing our towels in there. I haven't measured to see if it will work, but it would solve a whole bunch of problems. If I could figure a few other storage solutions, we might could even have a front hallway again. The bathroom door would still be there, but the toilet paper would be gone. That would be an improvement.

Our motley assortment of towels is the result of having some nice and newer towels but also keeping in the rotation the towels that I bought when I left home to go to college. 30 years ago. I've been just cutting the strings off the sides as needed. PWM suggested tonight that I could throw those towels away. I'll make them into rags or give them to Goodwill so someone else can make them into rags. They're perfectly good fabric. In any case, PWM agreed that I should invest in newer towels that actually absorb water. Maybe that were made in this decade. And I thought I was being so frugal.

Well, LaundryPalooza is almost over. The clothes are clean and all but a few are folded and hung up. I'll put them away tomorrow - I promise!!! And it's midnight and I'm tired and Wisconsin won their basketball game which I can't believe I even care about. And, no, there is no deeper meaning to this post about laundry. It's just about laundry. And you're welcome to leave you're deep and insightful or shallow and silly or practical and useful ideas in the comments. And that would make me very happy.

Sunday, March 22, 2015

I'm tired of fighting

I've had a migraine since Wednesday. It's been kind of up and down. Mostly 4-7/10. On Friday, for a while, it got up to a good 8/10. It feels like it is kind of tapering off today. I've also had the reappearance of some right sided head pain with cutaneous allodynia (pain when I'm touched) on my right forehead and scalp. That really comes and goes. It will be really bad for 20 minutes and then just moderate for several hours. But, it's never been quite gone for the last three weeks. Aaaarrrrggghhh.

Rosie Girl's choir professor was diagnosed with breast cancer last fall and had to have chemo and radiation. She gave out pink bracelets that say "kick it to the curb" referring to the breast cancer.

I find the "fighting illness" mentality interesting. I wonder what my grandparents' generation would have thought about it. For example, my grandfather had several severe heart attacks in the early 196os before he had a fatal heart attack. At the time, the only treatment, I believe, was to take nitroglycerin for pain and to rest. There was no "fighting" heart disease. In fact, for most diseases, people just did what their doctors said to do. They were passive; the doctors were active.

Somewhere in the 80s or 90s, I think was when things started to turn around. People started to get more involved in our own health care as the medical field started to see how changes in diet and exercise could impact disease processes as well as general health.

Now, when someone gets ill, they get the physician's treatment recommendation, but may also turn to other practitioners for additional treatment, especially when the diagnosis is complicated or doesn't have a clear cure, like with autoimmune diseases or migraines.

Unfortunately, some people have some to completely distrust medicine and have decided, based on limited research, to not avail themselves of proven interventions, like vaccines and treatments.

What interests me right now, though, is the "fighting illness" language, like "kick it to the curb". I have chronic migraine. How the heck am I supposed to fight a migraine? In sociological language, I can take the benefits of the sick role (limited social responsibilities) if I also take on the responsibilities of the sick role (pursuing treatment). But, if my migraines don't get better, does that mean that I'm a failure? What if someone else does get better? Is that person a better fighter than I am? How many treatments are enough to try? Am I fulfilling my "sick role" responsibilities by following my neuro's recommendations, or should I also see every possible alt med specialist? Or only the ones that don't make me twitchy?

Or maybe we are just supposed to fight to stay socially active. "She's a real fighter. She still comes to work even though she's in pain." But the man who had to go on disability because of his pain is a failure? What about the person who has become a social recluse because of their pain or illness? Are they not fighting hard enough? And, let's admit it, that disability label is a real downer.

And if we use the language of warfare, how do we know when we've won? So many people with chronic illness will die with that illness. Did the woman who died with breast cancer lose? Or did she win because she kept smiling? If I still have migraines when I'm 70, I suppose I'll never win. We'll just put chronic loser next to chronic migraine, I guess.

Or should we lose all the warfare talk when we talk about our illness? I like to talk about high-pain or low-pain days. Or sometimes use the word struggle. These aren't nearly as loaded words When I say I struggle, it means that I struggle based on my own criteria; I'm not fighting a fight that I'll never know if I win or lose. 

So, let's try that. Let's not talk about fighting or having to be brave. We'll talk about high-pain days. We'll talk about getting through. We'll give each other the grace to have a bad day. The grace to be on disability. The grace to work full-time. The grace to be where you are in your illness. 

I hate chronic pain. But, this is the life that God has given me to live, high-pain days and low-pain days. It really helps me not to think about getting up each day to fight again. I get up and know that God gives me the grace to go about my day, whatever pain level or productivity level it's going to be. "In this world you will have trouble, but, take heart, I have overcome the world." John 6:33  “Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest. 29 Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.” Matthew 11:28-30

Can we quit fighting?

Saturday, February 28, 2015

Lagniappe February 28, 2015

  • Even though I spent January in South Florida, I'm still getting tired of this cold weather. Something is not right when you start to thing that double digits is "pretty warm"!!
  • Wild Man's kitten, Rory, gets declawed and spayed tomorrow. I'm pretty glad about the declawing part. Rory has not been destroying furniture, but she has been using her claws to terrorize Sophie (Rosie Girl's cat).
  • I'm missing homeschooling (more on that another time). I'm not missing the schooling as much as the "home" part. Wild Man is gone all day for school, then practice and/or work after school. Patrick, Wild Man and I went out for dinner Thursday night just because we had an evening together.
  • It's getting to be that time again. Yep, Botox! The countdown has begun. We're at 8 days right now, and my head is feeling it.
  • I just finished reading The Rosie Effect. The main character is a very organized, obsessive-type university professor. The story takes place in Australia, so all the characters have Australian accents in my head except for the main character. He sounds like Sheldon from The Big Bang Theory.
  • I started making beer-cheese soup on Tuesday, but it separated on me. Ick! I'll probably try again tomorrow or Monday.
  • Monday is Parent-Teacher day at the high school. PWM will be working all day, of course, but Wild Man likes me to come in and talk to his teachers. Last time, I had a migraine and only was able to talk to a few teachers. Here's praying for a better time this week. (And, isn't it cool that Wild Man likes me to come in to talk to his teachers??)
  • I've been meditating on worry and Matthew 6:25-34. More on that in another post.
So, what's up with you?

Monday, February 23, 2015

On Being Good (Enough)

I'm prompted to write today because of something that was written on Facebook that I think was intended to encourage fellow Christians to live lives of obedience to Christ. Sadly, it didn't come across to me that way. Maybe it's because of my years in Evangelicalism. Maybe it's my own tendencies to try to "earn" my way in life. This post is part of my trying to work that out in my own head.

I grew up in the heart of Evangelicalism - Southern Baptist churches. "Salvation by faith alone" was pounded into our heads from the time we could sit up in our Sunday School classes. We all memorized John 3:16 as soon as we could talk. Oh, and Bible Drills. These weren't just to to learn to look up verses. We also memorized verses - ripped right out of context (one of my pet peeves) - and learned to look them up quickly. "For by grace you have been saved", "All have sinned and fall short of the glory of God", "while we were yet sinners, Christ died for us."  By the time I was a teenager, I had heard so many sermons and Bible studies on Romans that I had a pretty good handle on that fact that our eternal salvation (to heaven) and our abundant life on earth are due to Jesus' death on the cross and resurrection and not due to anything I have done or could do.

But . . . but . . . but . . . At the same time, we were also taught something that Michael Spencer called "wretched urgency": the need to DO things for God now! As a teenager, it was generally phrased as "being sold-out for God" or something along those lines. We were encouraged to make sure that everyone at school knew about our faith and then be prepared for persecution. (All my friends knew about my faith and none of them persecuted me. I must have done something wrong.) We were told that we could be the difference between our friends' eternal destination being heaven or hell. A number of my friends initially planned careers in the ministry because of this "wretched urgency". They didn't all stay there. Another example: Only Christian music is good; all other music is terrible. Listening to anything but Christian music will ruin your witness for Jesus.

This continued into adulthood and continues even now. We have books like Radical by David Platt. And the number of books for Christian women that tell us how to be The Proverbs 31 Woman would fill a library. And they are all books telling Christians to be more committed. More holy. Work harder.

We are told that we are saved by faith, but somehow, we still have to work hard to make God happy. In this worldview, we got saved, but God needs us to do more. And if we want the world to know that we are good Christians, by golly, we need to show them by how good we are!

And there's plenty of scripture to support good works. After all, God does want us to be holy. Jesus' teaching is filled with examples of teaching us how to act. Paul's letters contain many instructions to the churches on how the members can behave in a more godly fashion. The book of James teaches us that faith without works is dead. In fact, it is said that Martin Luther questioned whether the book of James should be in the canon because of it's emphasis on works. Indeed, James and Romans seem to be saying almost opposite things at times.

So, there I was in my mid-30s, overwhelmed with life, and overwhelmed with being a good Christian. Then I came across a verse that I had read a million times, but suddenly stood out to me. 28 “Come to me, all you who are weary and burdened, and I will give you rest.29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” Matthew 11:28-30 This verse comes right after Jesus reveals himself to be God, which is significant because he's making it clear that it is God himself who is offering to take our burdens. So, Jesus is saying that he will give us rest. This Christian life that was so hard to live. is supposed to be easier. In Ephesians 3:10, Paul says, "For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do."

Jesus doesn't want us to be struggling under this guilt of "doing more" for God. God already knows what he wants us to do; we can relax and just live our lives and pray for guidance. And Jesus takes our burdens. How cool is that? It's hard to learn, but it's real. Somewhere along the way, I had missed this. I heard the work harder part, but missed the "rest for your soul" part. And my soul needed rest.

One of the other things that I'm learning is John 15:1-17: abiding in Christ. I don't completely understand it and I certainly haven't learned to practice it well, but I think it's the key to getting away from the "wretched urgency" mindset and finding peace. When I can really abide in Christ, then I can be confident that the "works" that I'm doing are enough. There's no guilt about whether I should participate in this or that ministry or activity. Jesus gives me the grace I need for each day. And when I'm at the judgement, all I can ask is that he says, "Well done, good and faithful servant."