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.

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.

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.

God is Up To Something.

It's been a pretty crummy few weeks. I've struggled with sleep, obsessed about the stupidest things, worried about my health, felt unworthy, gotten overwhelmed, and had decision fatigue. Then I got that flat tire. I may be ridiculous when I say this, but I got the idea that God was about to do something.

I have faced spiritual opposition every time I tried to take action regarding my professional career. I renewed my license the Monday that all this started. I had been praying a lot about some things before that, and then suddenly the importance of those things took a back seat. 

Whether or not I'll get the answer I want about any of those matters, God wants me to pray. And I confess that I let the crumminess of life distract me from that spiritual responsibility.
I went to the occupational therapist and the physical therapist the two days before I had the flat tire. I got super overwhelmed about all they asked and expected of me. And I started thinking about that instead of about loving others, doing good in the world, or praying. And then the flat tire.

The flat tired changed my perspective some. It helped me realize that there is still good in the world. It made me grateful. And it convinced me that I need to persevere.

When God works, Satan works. And God is always working, so Satan is always working. 
Therefore, I am rebuking Satan in Jesus' name and praying to accept what God has for me. I'm not expecting some pie-in-the-sky reward for my faithfulness, but I am looking forward to seeing what God will do, because I know He is up to something.