Focal Dystonia: A Lesson in Acceptance

Humans are meaning-making creatures. When we make meaning out of things, they seem earlier to accept. It feels like we have more control. We we can't make sense of our situations, when we don't have an A + B = C equation, it's difficult. In those situations, we can try and try and kick against the goads, or we can work on acceptance.

I am on a long journey of acceptance with focal dystonia. I chased diagnoses and solutions for so long. I wanted my situation to be fixable, curable. It it was carpal tunnel syndrome, or cubital tunnel syndrome, I could have surgery. If it was nutritional, I could take supplements. If it was neurological, I could take medication. As it stands, the problem is in fact neurological, and I do take medication, but it does not abate the symptoms. It only eases them, slightly, if it is a good day.

I grasp at straws. I wanted to find out what my condition was. I did. I wanted to heal it. I can't. I wanted to understand this condition. I am learning to, as much as anyone else does, but information is limited. I want to make meaning, but I can't. 

I have asked myself if it is my fault that I got focal dystonia. Did I crochet too much? Type too much? Use my hand wrong? Is this a consequence or punishment for bad habits or ways of living? Is my brain not good enough to heal? Am I not good enough to heal? If this is my fault, maybe my condition will make a little more sense.

No one really knows what causes focal dystonia, though, so the point is mute. I have focal dystonia. Unless God does a miracle, or by common grace, allows doctors and scientists to find a miracle cure, I am stuck with this. My choices are to keep looking for answers, to fight it, or just accept it. 

This focal dystonia is a thorn in the flesh. It causes me pain. It limits my activities. In God's sovereignty, though, he has allowed me to have this condition, and allowed it to persist. I can fight God, and fight my condition, or accept it. It's not a one-time acceptance, either, but a constant one, as the condition morphs and changes with times and conditions. 

Oh, this life. I wish it was easy. I wish I had answers, but I don't. I only know the One who does, and am working to accept what he allows me to receive out of his merciful, gracious, loving hands.

All The Things That Didn't Work Out

Do you ever stop to think about all the things that didn't work out in life? Those things that you wanted, but didn't happen? Your plans that didn't quite work out? I've been doing a lot of that lately, all the while pondering how God's ways are bests, and how I need to submit to His will, rather than ruthlessly seeking my own.

I planned to go to graduate school directly after undergrad. My three years of undergrad burned me out so bad that I gave up on that dream and accepted a job to work at the school for two years before deciding what to do with my life and moving on. When the two years were up, and I asked God what was next, lo and behold, he said grad school, so I went. Getting that job and staying there were hard in their own rights, but also blessings, because the job paid for school, and was flexible enough that I could keep it, even during the rough internship years.

I decided to move back to Arizona and planned to start my career there. Licensing took forever, so I ended up taking a different job. It was a good job, but not for me. Having it showed me that I really wanted to do what I went to school for. 

I went to graduate school to work with adults. I declined the classes about kids. Lo and behold, I have worked with kids for the majority of my post-grad school career. Never say never.

I had given up on marriage and planned to buy a house and settle on my own, maybe with roommates. That flopped, and at the very last minute, on final walk through. Had I had that house, though, what would have come would have been harder.

I wasn't going anywhere looking for anyone when I started having talks with my (now) husband at church. It wasn't intentional pursuit. We just happened to be together a lot, and then the feelings started.

After we became engaged and got married, we decided that we wouldn't change anything for the first year of our marriage. That would allow us to solidify our relationship, we thought. Then my husband announced that he might want to go back to school. We looked at a condo, put in the third plus backup offer, and somehow got it, so ended up moving five months after marriage.

We moved so that my husband could go to school on campus, but then COVID struck, and he was stuck at home. He's finally back on ground, but had we not moved when we did, we never would have been able to afford our home, or any home for that matter, due to skyrocketing home prices. And had I had a home when we got married, we might not have been able to buy this one so quickly.

I planned to finish up my full licensure process immediately after moving, but it took another year plus. That frustrated me, but I also got a lot of good supervision. I learned things I probably would not have otherwise.

When I got my first botox injection for dystonia, it was supposed to help, but instead it atrophied my muscles so bad that I ended up asking for a second opinion. That got me referred to a specialist, who is excellent, and has fine tuned my care. I might not have gotten to her had the first injection gone well.

All my plans aren't God's plan. God has his own way, and his ways are best. And sometimes those ways don't feel like the best, or aren't the best on this earth. It's God's grace and mercy to allow me to see good that has come from all the things that didn't work out. My challenge is to keep all the current things not working out in perspective, to believe that God's way and will are better than mine, and that whatever does not work out here will ultimately be forgotten when I have all the things of heaven, most notably, God's eternal enduring presence.

Afghan 67

Another one hit the post office!

This blanket is from another pattern off the 20 baby blankets list from which I have been working. Knitting with Chopsticks specified using an additional color (gray), but I did not have it, so I doubled up on the Red Heart spring green. I also used Mainstays white and pink. The bead and bubble stitch were new to me. (I had to re-read the instructions every time I came to a row of them!). They gave the blanket nice texture, I think. I started this blanket around Fourth of July and thought it looked like a watermelon. I gave it to a baby set to come Christmas Eve, so the green and pink seem like a riff on Christmas colors. Maybe this is an anytime blanket!

The size of this blanket seemed larger to me. Mine measured 34 by 55 inches, with 115 total rows. (The author of the pattern measured her blanket at 41.25 by 51.25 inches.) I used my ergonomic J hook for this blanket. It is pretty much the only hook I use, and it works great! I am just thankful I can still crochet and keep crossing blankets off my list!

Afghan 60

It's been awhile since I posted a crochet project, so here's the latest:

(Yes, I missed posting afghan 59. Oh well.)

Some of you followed my Instagram #OneHeartOnePrayer journey earlier this year in which I crocheted and prayed for one person a day during our state's shutdown. I ended that project when our state reopened, but after a rather prompt return to shutdown, I needed a new project. Enter "crochet a row a day" and the birth of this project. It was really a way to use up yarn on hand and restock my baby blanket stash. (I don't crochet like I used to due to time restraints and my focal dystonia.) I followed Bella Coco Crochet's easy and fast free crochet baby blanket pattern. I will say that the pattern was easy. Fast? Maybe not so much. But I got it done. Praise the Lord!

Praying for the babe that this blanket goes home to...

Real Life Marriage: "In Sickness and In Health"

Photo by Sharon Lane

We pledged to love each other "in sickness and in health" in our wedding vows. I didn't quite realize how much we'd have to practice that. Chris got a terrible case of bronchitis a few weeks ago, leaving me to do most of the house stuff because he literally couldn't. Today, on our four month wedding anniversary, I have laryngitis and can barely speak. He drove me two hours to the neurologist to get botox for my dystonia. This is real married life, people.

Love is not always pretty. It is not always fun. It does not always mean being with the other person is enjoyable, either. I'm paranoid about germs. I hurt when Chris hurts. I wanted to "fix" his illness when he was sick, and I couldn't. Love was making tea. Love was fixing soup for dinner for days on end. Love was giving hugs and trusting the Lord with the results of my virus exposure. In all of these situations, love was a choice. And now Chris is doing the same for me.

For several days now, I haven't talked much at home in an attempt to save my voice. Chris has chosen to be with me even though I'm not good company. Chris had work today. He was the sole person responsible for a few things, yet he chose me over those to-dos. He chose to come with me and support me and hold my hand while I had needles poked into me and toxins injected. He chose to come with me to drive the two hours home afterward because I said my arm would hurt. He chose love. We both choose love.

Marriage is good. It is shaping. It is special and fun and all the good feels...at times. But is also hard and messy and germ-exposing. It is painful and more commiseration than camaraderie sometimes. But it's good and right.

Marriage is a commitment, and with the Lord's help, we're keeping ours:

...for better or for worse

...for richer or for poorer

...in sickness and in health

To love and to cherish, until death do us part or Jesus Christ returns.

Focal Dystonia: What Helps

I've written several times here about my focal dystonia. It's been a long journey, and one I am beginning to realize will never be over, save the Lord miraculously healing me. To be honest, the condition seems to be worsening again, but after working for nearly a year to build back the muscle lost to atrophy from getting botox, I'm focusing on finding any way I can to avoid that again.

What I've Tried:

• Avoiding crochet: I tried this for a year, thinking if I gave the repetitive motion a break, maybe my hand would get better. It didn't.
• A low-salt diet: I thought that lower salt might reduce inflammation, but it didn't seem to help, and I like my salt! So I went back to trying to eat moderately and not avoidantly.
• Botox: I already mentioned this, but it caused major atrophy of my arm and extreme weakness that I am still trying to overcome. The doctor said that botox will always cause atrophy, but that the last amount I received was enough for someone with an arm the size of my leg. Go figure!

What's Helped:

• Using an ergonomic crochet hook: This has allowed me to enjoy crocheting again. I still cannot crochet as long or as often as I like, but at least I can do something. The "fatter" handle makes the hook easier to grasp and helps reduce the dystonic clenching that happens.
• Physical therapy: This helped me recognize how the dystonia was affecting my whole body. It has helped me work on my posture and make other corrections to prevent and treat the neck and shoulder pain that come from the dsytonic contractions. It also gave me a home strengthening routine that has helped me rebuild my muscle. I'm on round three of the eight week program and have gained about three quarters of an inch of muscle back in my right forearm, which tells you how much I'd lost.
• Occupational therapy: This added to my physical therapy routine and gave me some ideas about the process behind the dsytonia. My therapist also recommended some special writing implements and other assistive devices for use when my hand is bothering me. One is the Pen-Again, which is an alternate grip pen that again reduces the clenching action I have with the dystonia.
• Oval-8 finger splints: The occupational therapist recommended these, and I think they help sometimes. They are supposed to stop hyperextension, but the therapist said they also might add sensory input. Whatever. If I'm having a hard day typing, I try them. They at least look cool (or so my kids say!)
• Changing my routine: The truth is, my life isn't the same as before dystonia, which means I have to do things differently. This means I don't play piano as much, or much at all. I use my left hand more. I have to remember to hold onto things strongly with my right hand. I use a stand-up desk at work to relieve shoulder tension. I try to break up typing into shorter periods. I stretch a lot.
• Acceptance: The mental aspect of dystonia is part of the struggle. I fought my diagnosis and its permanency for quite some time. I wanted to find an answer, a solution, but there isn't one right now. So I am trying to accept my condition and give thanks to God for what I can do. And little things like painting my nails helps me remember to do that.

Dsytonia is not a condition I would wish on anybody, but it's my reality, and by God's grace, I'm learning to cope with it.

Butterfly Run 2.0

I like running. Maybe I'll do a post some other time about all the reasons why, but this post will be about one particular time I liked running: The Butterfly Run this past weekend in Tempe.

The Butterfly Run is a partnership between Nationwide Children's Hospital and Big Lots. It is designed to bring awareness to pediatric behavioral health issues and raise money for research into the causes of and treatment of the same. This was my second time running the race (a recap of my first is here) and I will run it again if I can. I like running, but I'm also passionate about the mental health of children.

The course this year was once again at Kiwanis Park. We went around the opposite way around, however. I did make all the turns and got in the full race this time, unlike last year when I had to run around a little extra to get in the 5K.

One of my friends ran with me, and my best friend from Arkansas watched, so that made the race extra fun. I've been sick and haven't been running that much or that hard lately. I've also been focusing more on physical therapy for my dystonia and gaining muscle than I have been on speed training. But somehow, I made really good time and set a personal record on this course. I also got first place in my gender/age division (only six people, but still, I'm thankful). 

The weather Saturday was beautiful and I got to go to brunch and spend time with my best friend after the race. We ate at The Uprooted Kitchen, wandered the gardens surrounding it, and then went shopping at Marshall's. 

I like running for a lot of reasons, but this weekend, I particularly liked it for the ways it allowed me to connect with causes and people I care about. My heart was filled and I came back from my "mini-vacation" a happy girl. Thank you, Lord!

Chocolate Zucchini Proats

I've been trying to eat more protein since my dystonia diagnosis and all the physical therapy I've been doing. But I'm also struggling to eat my veggies. These overnight oats covered all my bases and left me with a little more free time in the morning since they were pre-made. This recipe was a win for me, so I thought I'd share it with you, too.

I like bittersweet chocolate, so if you like things sweeter, feel free to add sweetener. Otherwise, enjoy as is.

Ingredients:

1/3 c quick oats
1 c grated zucchini
3 t dark cocoa powder
1/2 t cinnamon
1/2 t ginger
1/4 t cardamom
2 scoops protein powder (I like the organic pea protein from Trader Joe's
1 c water

Directions:

1. Mix all ingredients thoroughly in a bowl or large jar.
2. Cover and refrigerate overnight.
3. Enjoy in the morning!

Even If...

Life has been a bit of a muddle lately. I have had long days at work, relationship struggles, crisis calls, and the accident. I've dealt with late nights, short sleeps, paperwork up the wazoo, and feeling completely overwhelmed. This week my hand has been acting up and I have felt emotionally dysregulated. Today, I got the call that the damage to my car is worse than they thought and my dad says to prepare myself that it may be totaled. I would be bummed if that was the case. We are leaving for a quick family trip tomorrow to celebrate Mom's birthday and I feel ill-prepared and ill-equipped to appropriately celebrate.

But I keep think thinking:

Even if work is hard...
Even if the worst happens...
Even if friendships fail...
Even if my health conditions cause pain and make life difficult...
Even if my car is totaled...
Even if I don't feel safe or sane...
Even if don't have the level of joy I think I should...

...God's still on the throne and He's carrying me, all the way through this life and into the next.

What are you facing, friends? A difficult job? A decision that needs to be made, but options that don't seem right? A terminal diagnosis? Being let down by someone you love? The loss of a treasured possession?

If you believe in Jesus for salvation, God's with you, too. He's got you. We're in this together. Even if...

Some Questions are Okay...

I've received a lot of questions about my hand lately, mostly because of the new finger braces I'm wearing. Some questions are okay. (Some aren't.) And it's okay to ask about this.

Basically, my hand condition (focal dystonia) is permanent. I've got neurological miscommunication that makes some fingers contract and some fingers flex, both at the same time and at different times. I'm in my last week of occupational therapy and still doing my at home strengthening program. The finger braces are supposed to help my fingers do their jobs, especially typing, and the at home program is supposed to help restore the muscle mass lost due to botox. My therapists say it will take awhile for that to happen, though.

I wish there was a cure for dystonia, but there isn't, so I'm learning to accept it. It helps that I'm realizing there's more to life than my hand. At least I still have a hand.

So here's to coming up with concise answers to the hand questions, doing my job, being diligent about therapy, and seeing how things go. Barring a miracle, this is life, and I want to live my life, dystonia or not.

Food, Freckles, Fun

I spent last weekend in the islands, The Bahama Islands, to be precise. Two of my best friends from college and I went on a three day cruise out of Orlando. It's what I wanted to do for my 30th birthday, but it got delayed a little due to scheduling.

I took an early afternoon flight out of Phoenix and arrived in Orlando late. (Thanks, four hour flight plus a three hour time difference.) It took my forever to get to the hotel due to trouble finding the shuttle, but I made it. Being greeted by these two was spectacular. It was late, but we proceeded to girl talk late into the night/early morning. I laughed so hard I spit the water I was drinking all over myself. These two are some of the few that really understand me and know me enough to get me to my silly state.

We departed for the ship mid-morning. Uber and Lyft are the way to go. My friend gets credit for reservations, but we had nice cars and nice drivers and the price was very reasonable!

We got to the ship in time for lunch and then toured the boat. This boat wasn't as nice as the last one (no sauna or steam room), but it worked. We weren't on the boat that much anyway.

Food on the boat is pretty spectacular. There are options of the main dining room or the buffet for breakfast, lunch, and dinner. We went with the main dining room for all three meals, but dinner was definitely the best. You can pick your appetizer, entree, and dessert each night, but here's a sampling of what I had:

Calamari

Spectacular salmon

Tasty duck

Roasted lamb

And plenty of snacks spread throughout

I climbed the rock wall the first morning. It took me three tries since I am pretty weak because of my hand stuff, but I did it!

Then we got off the boat and went for a walk in Nassau, Bahamas. We wanted to see Atlantis resort, but underestimated the distance and exertion of the walk. When we got there, it cost an arm and a leg to see anything. Oh well. We still had the experience.

The next day was all day at CoCo Cay, Royal Caribbean's private island. It was paradise! I waded, went for a walk, and just laid on the beach since being wet is not really my thing. I had some time to actually rest and think, which was awesome.

I wore sunscreen and reapplied, but I still got a little sunburned. I also got a lot more freckles. Oh well, a minor sunburn is a small price to pay for all the fun we had. And I like my freckles.

The most trouble we got into was stamping our own passports. We really didn't get into trouble, either. We just used the stamp sitting on the desk in the empty room and didn't tell on ourselves when the clerk came back.

I had so much fun, and though life has hit me square in the face now that I'm back on land, I wouldn't trade this experience for anything. I am so thankful for the time I spent and so thankful for friends who agreed to go with me. We dubbed this vacation the start of our cruise club, so hopefully they'll be a next time.

Arizona: Year Two

I've made it two years, y'all. I've gotten a few funny looks lately when I've expressed my excitement about the anniversary of my move to Arizona, and that's okay. They don't get it. These past two years have wrecked me, in good ways, but in hard ways.

Work: If you had told me in grad school that I'd spending close to fifty hours a week helping kids, I would have said you were crazy. I fought against my elementary school internship placement. I asked the community clinic to only give me teenagers and adults. I didn't take the play therapy training classes offered to me. And now I have a birth to five year-old case load. You'll find me outside throwing a football more than you'll find me in an office. I'm now taking play therapy and sand tray classes. And I'm growing to love what I do. Go figure.

Church: I came home to Arizona partly because my family belonged to a strong church. And it's fallen apart. The brokenness of the people that make up the church has become apparent and though we are pursuing healing, it is messy. We are currently without a pastor and our body has decreased to about a third of the size. But we're still together and the Word is being preached. Thanks be to God.

Family: I planned to live with my parents only long enough to set up my own independent life, but here I am two years later still living at home. It's been hard, but good. I have found a lot of healing in relating to my parents as adults. I've been forced to let some of my perfectionism go and recognize that relationship matters more than having a perfect house or an ideal life. If God ever sees fit for me to get married and have a family of my own, this has been good training.

Worship team: I sang in choir growing up and never thought I'd sing on stage. But I've found community in worship team and you'll find me on the platform a few times a month singing, but for God's glory and not my own.

Car: I thought I knew what I wanted and fought against Dad's suggestions. But I drove the car I liked and it wasn't what I thought. Now I'm back to Dad's suggestions. In fact, I am supposed to get that new car Dad suggested today. My dad is a smart man.

Community: I've expected community to come to me, but I'm learning that I've got to go to it. Relationships aren't one sided. I've met a lot of cool people here, but it takes a lot of intentional effort to connect. Connecting means being honest and vulnerable and belonging to myself above all else. It's hard work.

Health: My health struggles have reminded me that I am human and not invincible. Though I am thankful that my conditions are not fatal, they are frustrating. Dystonia is yet another way that God is sanding off my rough edges. I didn't choose it, but God has allowed it into my life for some reason.

I still have goals in life, but I'm trying to hold them loosely. As God takes what I have known and breaks it all apart, He reveals His bigger and grander and more beautiful plan. And You, my God are greater still.

This Mountain

As I drove back from my occupational therapy evaluation, I felt so overwhelmed. The therapist wanted me to come to Phoenix once a week for six weeks. I'd scheduled appointments, but didn't see how they could work. I work full time, or more than full time, after all.

The mile posts flashed by as I sped up the hill back to work. And God brought to mind this quote that I'd seen on Pinterest some time earlier:

I tell people all the time that self-care is important. But do I really practice it? Not really. I like to be self-sufficient and I try to pretty much take care of myself. Needing to go to the doctor so much is quite frankly humbling, and embarrassing, and at the same time probably something I need. It forces me to actually put my actions where my words are, and take care of my health. It requires me to make time for myself and prioritize my well being. This therapy probably won't cure my condition, but it might help, and I have to take the chance.

My diagnosis of dystonia may be a diagnosis that cannot change, but the way I view and take care of myself can. With God's help, the mountain of bulletproof self-sufficiency that has guided my life for so long can be move. In it's place, I hope to make a mountain of faith, hope, and love, a testament to God's faithfulness and not my own.

Walking Around These Halls

Walking around these walls

I thought by now they'd fall

But You have never failed me yet

Waiting for change to come

Knowing the battle's won

For You have never failed me yet

Elevation Worship, "Do It Again"

This hospital corridor is becoming far too familiar. After several years of making the rounds of all the doctors, I've been referred to Barrow Neurological Institute, and after multiple, multiple visits, I've received the prognosis is that my condition is chronic. This dystonia is permanent. As much as that is bad news, it is good news. I can seeking a cause for my condition and just start accepting it. Right now, acceptance looks like physical and occupational therapy. Long term, it looks like living in a new way.

I never thought that I'd have a chronic health condition at age 30. The doctors continue to tell me how "young" I am. I know I'm young and that's why I don't want more botox. But I also accept that I belong to a fallen world and that I am aging and that life will never be perfect.

I have prayed and prayed for my hand condition to go away. I have seen the inside of more doctors office than I can count. And while healing hasn't come, I can testify to this: God hasn't failed me yet. He is God over the halls of the hospital, sovereign within the walls of dystonia, and Lord of my life.

Waiting for What?

"He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end."

~Ecclesiastes 3:11

I've been feeling sad lately. Sad over lost expectations. Sad because I feel lonely. Sad because I don't know what is next. I was talking to my mom about how stuck I feel right now, and she told me that she doesn't believe that this season of my life is forever. I don't either, but what's next? I don't know.

I keep reading about waiting and how I need to do it. I know that waiting is a biblical virtue, but it's hard. Especially when I don't know what I'm waiting for. Am I waiting for a house? Am I waiting to get married? Am I waiting to finish my licensure credentials? To find a new community of close friends? To find the "perfect" job? (Though I like my current job). And how long will my wait last? Forever?

Spiritually speaking, I know that I am waiting for forever, for eternal life with Christ in heaven. But that doesn't necessarily make this current life any easier. When I read this verse from Ecclesiastes, though, I realized that what might make things better is focusing on the beauty now. I don't have to wait to do that. I can see God's beauty in:

His creation
The floral and fauna of the desert
The creatures that move upon the earth
My family relationships
My friends
The kids I work with
Good food
Happy memories
The people around me

These are beautiful and good things that remind me of who God is and what He is doing in the world.

Waiting is both passive and active. It's passively being still and not trying to do for myself what God wants to do for me. It's actively trusting in, looking to, and believing on God. Maybe focusing on what's beautiful now will help me began to frame this hard process of waiting not as a search for meaning, but as a practice in focusing on God who gives life meaning. Because ultimately I'm waiting for Him to do His work, now and in eternity.

My Bitter Self

I've been finding myself feeling extremely bitter of late. I'm bitter that I'm not married. I'm bitter that my hand doesn't work. I've seen bitterness oozing out of me in the form of negative thoughts, snarky comments, and overall discontent. I don't like my this bitter side of myself.

As I drove into physical therapy recently, I remembered a wise woman's comment, “Anger is a secondary emotion.” And I thought to myself, “I'm not really angry. I'm sad.” I'm sad that I haven't found someone to share my life with. I'm sad that it appears my hand functioning will never return to normal. I'm sad because I have expectations that are going unmet. As I thought all of this, I wondered to myself what would happen if I just let myself be sad. Could I be sad instead of angry?

I talk a lot about feelings, but the truth is that I don't really like emotions, especially the negative ones. And when it comes to negative emotions it's easier for me to feel anger than it is to feel sadness. Anger directs my focus at someone or something. It is external. Sadness, on the other hand, forces me to look inward to myself and my relationship to God. Sadness forces me to realize that that I am not in control and that I must submit to God's plans for me, even in that means long-term singleness and a bum hand. Sadness hurts.

I don't like sadness, but I like my bitter self even less. So I'm trying to let myself feel and deal. God is with me. He will never leave me nor forsake me. Friends and family and plans may fail, but God never does. He gives me reason to rejoice, even amidst the sadness.

Settling

My brother gave me a beautiful wood-wick candle for Christmas. I was saving it for my own home, so I put it away in a cabinet. But since buying and inhabiting my own home seems like a far off dream at this point, I decided to open it and light it. As the candle set there on the corner crackling and burning, I thought, “I've decided to live here. I'm settling."

I'm settling on quite a few things in life right now because I refuse to settle on other things for the long term. I'm settling on living at home with my parents because I refuse to settle on buying a sub-par house, or buying a home that exceeds my budget. I'm settling on being single because I refuse to settle on less than God's best in marriage. I'm settling on suboptimal hand performance because I refuse to settle for more botox. I'm settling on staying in Arizona because I refuse to settle and believe that I've done all I can here.

Life is about decisions, and I've got to settle one way or another. So I'm settling on living out my life right here and right now, rather than reaching for things that aren't good for me.

Afghan 57

Here comes another one:

I started this one before the scarf, so I don't know how long it's been in the works. But now it is done! The pattern is one I found on Pinterest, the easy blanket stitch from Mama in Stitch. I used Red Heart cherry red again. I probably should find a new color soon....

Friends, have any of you completed fun projects lately? Please share in the comments section.

*I often write about my dystonia when I share about my crochet projects, but I'll skip it this time. If you want an update and didn't read my last post about my hand, feel free to do so.

Disability or Ability?

I've been to the primary care doctor, orthopedic doctor, chiropractor, neurologist, physical therapist, and a specialist. I've had two MRIs and two EMGs. I have received numerous injections of botox. The problem isn't any better, my hand that is. I wanted a fix. I wanted a cure. But I'm beginning to think this is a permanent condition.

I've always been privileged: able-bodied, smart, and pretty healthy. We didn't have tons of money growing up and I had some illnesses, but nothing was permanent. Not this. This hand issue appears that it is going to stay the same, if not get worse. I have a disability.

I've seen plenty of people operate with disabilities. They don't make a big deal of it. They just live. But me? I feel in the spotlight. I wonder what people think when they see me type fully with my left hand and with only one finger of my right hand. I have to explain why I don't play piano much anymore. I drop things. I have strange pains. My arm has atrophied and makes me feel self-conscious. This condition is embarrassing. I'm frustrated.

I can focus on what this condition of dystonia takes from me, but in some ways, it's a gift. It reminds me that I'm human. It forces me to slow down. It teaches me to pace myself. It requires me to ask for and accept help. It makes me recognize the benefits of health insurance and access to doctors. It provides me the opportunity to identify with others who struggle. I can't change the fact that my hand doesn't work like I want it to, but I can change the way I view this condition. Do I see dystonia as a disability, or an ability? My perspective on dystonia makes a difference in how I cope with it.

"This is All Good News"

"This is all good news." That is what the doctor said after conducting yet another nerve study of my arms and hands. I had hoped that this study would reveal the cause of the incoordination and dropsy and clenching and pain of my right hand. I even got excited when the EMG tech said my nerve responses were slow (but then he used a blow dryer to warm up my hand and that fixed the "problem").

(My marked-up, poked-up, post-EMG-test-hand)

I've been struggling with this hand issue for years now. I thought it was carpal tunnel, but then it wasn't. I went to the chiropractor. I visited the neurologist. I underwent MRIs of my neck and spine. I tried a Parkinson's medicine. I got botox. I went to physical therapy. Nothing really changed.

So when the doctor told me the test showed no cause for my problems, I felt disappointed, and angry, and discouraged. I am thankful that I do not have muscular dystrophy or multiple sclerosis or some incurable disease, but I wanted the doctor to find something wrong so he could fix me. The lack of results from my test wasn't good news in my world. 

My mom and I have a weekly tradition of walking and talking on Saturday mornings and on our walk today, she brought up Romans 11:33. This verse says, "Oh, the depth of the riches of the wisdom and knowledge of God!  How unsearchable his judgments, and his paths beyond tracing out!" As we talked about God and his inscrutable ways, I thought about my hand and how God says he works all things together for good for those who love him (Rom 8:28). My hand issues do not feel good. The lack of diagnostic results from my test do not feel good. But I'm not on the other side of the table. I'm not the one with the medical degree and the background knowledge needed to interpret the tests. I don't know what it would really be like to get the test and have results that pointed to a terrible diagnosis.

I think it's like that with God. We pray for healing and hope and help and other good things and we don't see God come through. Life doesn't go well and we don't feel good. But we don't have infinite knowledge. We don't see our lives as the tiny specks they are in the grand scheme of God's cosmos. We don't know how our pain and sorrow and grief and other "not good" things might fit into God's eternal plan.

The "not good" of life is hard! I am not at a place where I can fully accept a diagnosis of dystonia as the only reason for my hand issues. I get angry when I can't type well or when all the tendons and muscles in my forearm hurt from trying to use my hand. I still plan to go to Phoenix to see another doctor in order to get a second opinion. I am not happy with the "good news" of my tests.

But in the midst of it all, I still have to claim and believe in God's goodness. I have to recognize God's goodness in spite of my worldly suffering. I live in light of God's goodness, and that exists in an entirely different cosmos. That otherworldly universe is about God's glory, not just about what seems and feels good to me right now.