Tune-In-Tuesday: July 30, 2019

Last week I forgot to mention in the blog what level of electricity I am on. Well, I didn’t actually forget, but when I went to go turn on the remote to the DBS device it needed new batteries and I was too lazy to change them at the time – ha! But, for the record, Dr. T. upped the electricity to 3.60 on Frequency A. Whew – now that that’s out of the way…the past week was pretty good! I took a couple of days off of work as family from up north was down to celebrate (twice!) my grandmother’s 93rd birthday. I went boating and tubing and swimming (floating) in the lake and I think I now know several different ways to get to Norris and back. It was fun. Work was also great.

By the way, thank you for all the notes and compliments on my last post. I really had no idea it would be that popular – haha. But, again thank for reading and responding and encouraging and praying. It means more than you’ll ever know! And, if anyone has any connections to a book publisher, send them my way. I’m not sure why so many of you would want to read a book written by me, but that’s the most popular response I get: write a book. To be honest, I'm completely shocked by that. Me. Write a book?! Hmm... For tonight however, I promise not to be as long winded in this post. 😊

I saw this quote somewhere (probably Facebook if I had to guess) and it made me stop and think:

When I see quotes like this and feel the love that everyone gave me after my last post, it reminds me of the lyrics to an Amy Grant song titled "You're Not Alone":

"But you just can't lay down and die
You've got to remember
You're not alone in this world
Always remember
You're not alone in this world"

God is good and gracious and doesn't allow me (or anyone) to remain sad, wallow in what is or feel absolutely hopeless. He redeems. He saves. He brings joy inexplicable.

At times this past week, I’ve felt very steady on my feet. I’m cautiously optimistic that I am entering into/am already in a good walking phase. I know what it’s like to completely have no balance and not be able to take a step without feeling like I’m going to fall, so any good periods of stable steadiness on my feet, I’ll take! But then again, whether I’m in a good phase or not, things seem to change on a dime. I’m blessed though. My dad had a great line in his sermon on Sunday. He said that when bad things happen, God helps us through them, not from them. I don’t think I’ve ever thought about it like that. Of course, God doesn’t cause bad things to happen to us, but because of sin He allows them. And since He allows them then He helps us through them. My dad reiterated that we tend to talk to God more when we are in trouble, when we are sick, and things aren’t going our way. When everything is great, our talks with God (prayers) are more sporadic. I find this (unfortunately) true in my own life. I am trying to consciously thank God for all the good He’s brought me in life and believe me there is abundant good in my life!

I do want God to keep working on me. I know that I am masterpiece in progress (As are you!). Whether walking comes easy or I struggle with every step, I know that God's Got This!

Tune-In-Tuesday: Doctor's Appointment Update

I had an appointment with my neurologist this past Thursday, July 18. It’s been my routine to blog about appointments right after I have them, but this time, I had to chew on it a little more. I’m in a MUCH better mood tonight than I was the day of and even the day after the appointment. I had an 8 am appointment, which I usually love because I can get in and out and on to work in a rather quick way. This 8 am appointment was different though. It left me feeling like I should have had a later-in-the-day appointment and then I wouldn’t have felt sad all day. 😉

This is definitely how I feel some of my prayers come out sounding, but God is faithful and knows what I'm trying to say, so it's all good!

Dr. T. asked point blank if I thought the DBS was helping me at all. For whatever reason, I hesitated, but in the end concluded that yes, it was helping. However, there was that hesitation. Maybe it had to do with the fact that he’s never come right out and asked me that question before. DBS helps, but it’s not the miracle I was looking for, that much I’ll admit. 😉 Dr. T’s running out of options (he said so himself) and I’m running out of patience (with myself, not Dr. T.). It’s been three and half years since the deep brain stimulation surgery. While I haven’t gone up to the highest stimulation point nor have I gone down to the lowest stimulation point, options are dwindling. I told Dr. T. that “playing” with the settings was fun the first year and into year two, but now – now I just want to set it and forget it. I don’t want to play anymore. There are still options, they are just getting smaller. I asked what it would do to me if I went all the way up to the highest setting on the DBS. He said I’d probably get symptoms of my hand drawing in or maybe my vision would be affected, however nothing that would kill me (and everything would go back to normal if I adjusted the settings to what they were). 😉 He suggested that if I did that, I do it over a weekend or a period when I don’t have to go anywhere. I couldn’t do it last weekend and can’t do it next weekend, but who knows, maybe the weekend after, I’ll try it. Another option is physical therapy. I’ve done it before and it helps, but I always get to a point where the physical therapists have taken it to their limit and can’t help much beyond that. A third option is taking a medication to help with spasms, which I’ve done in the past as well. So, the appointment left me feeling kind of sad – not mad, just sad.

During the appointment, Dr. T. asked about physical therapy. He said that he was starting a pilot program just that morning with his Parkinson’s patients and how they react to certain physical therapies. He asked if I’d like to see the physical therapist that morning. I’d be her first patient and he said it was free 😉. I said I’d see her, so he led me over to where she was set up. To get to that room, we had to walk through the waiting room to the other side of the building. He was leading the way but was also talking to me. I had to tell him to slow down (walking) if he wanted me to walk with him – haha! He saw my “real” walking and not just walking down a hall with walls I could potentially grab ahold of if need be. There were also a ton of people in the waiting room by this time that I had to walk in front of, so he really got to see my walking. In fact, he said, “I’m going to walk behind you so I can see you walk. I know you hate that, but still.” The physical therapist confirmed everything I was doing was correct. She gave me some new exercises to do and some tricks to help with spasms, so I’m glad I went. I can do the exercises at home. Dr. T. also wrote me a prescription for another drug to help with spasms and said I could use it if need be but didn’t have to take it if it made me too sleepy or gave me other side-effects worse than the symptoms. He also increased the electricity I was receiving to one notch higher.

But, all day Thursday, I was just in a sad/melancholy mood. I must keep things in perspective though. While at the neurologists, there are these big signs on the doors that say, “MS Clinic”, Parkinson’s Clinic”, “ALS Clinic” and Huntington’s Clinic”. That in and of itself is sobering. Those diseases are much, much worse then what I have. (There’s also a sign for “Movement Disorders Clinic – that’s mine, in case you were wondering. 😉 ). I also saw a girl with a prosthetic leg – again way worse off than me! But, even with knowing that I was in much better shape then probably 95% of the people in that doctor’s office, I couldn’t shake my sadness.

I was still feeling sad on Friday when I went to yoga, but then my yoga instructor snapped me out of that mood. I told her about the appointment and happened to mention that before the DBS surgeries Dr. T. had asked me what my expectations for the surgery were. As clear as day, I remember telling him that if I could just walk with a cane (instead of a walker full-time) then I would be overjoyed. My yoga instructor told me flat out that I have exceeded my own expectations for myself. I should be proud. On the other hand, somewhere along the line, I wasn’t just pleased with being able to walk with a cane. I wanted complete freedom. So, I ditched the cane and life was even sweeter, but then, once more, I wasn’t pleased with just being able to walk assistance free, I wanted (want) to be able to walk without any issue whatsoever. So, in a roundabout way, I’m causing myself to be sad by putting unrealistic (if only for the time) goals on myself. The surgery did what I initially had hoped and prayed it would do – it allowed me to walk without a walker. That conversation with my yoga instructor left me with a whole new perspective. I have exceeded my own expectations. I should be proud of that, but now I want more and am not satisfied with the original goal. I feel like that’s life in general too. Once we reach our goal(s), we create a new goal(s) and until we reach that new goal(s), we’re not satisfied. There’s a fine line between being realistic and being complacent. I don’t want to be complacent, but maybe I should be more realistic (and content), but then again, I dream big. I always have. I believe in miracles.

I'm not sure how theologically sound this is (I do walk with God!), but I get its message and I love it.

So, all of that happened last Thursday and Friday and by Saturday I was ready to have fun. My aunt, uncle and cousins are down from MI with their boat (we celebrated my grandmother’s 93rd birthday on Sunday). My favorite thing to do on the lake is to go tubing. It’s the perfect balance of, “I’m going to die.” to “This is the most fun ever.” I absolutely LOVE tubing and got my chance on Saturday. It was the best way to rid me of sadness. It was a blast! I also enjoyed great quality time with family. Somehow having little nieces in my life always, always puts me in a good mood!

Sometimes it’s hard to be happy when you’re dealing with something chronic. But God didn’t promise us that we’d be happy all our lives. Yes, I let sadness creep in for a bit this past week, but in the end, joy won out. That’s life. You’ve got to take the good with the bad and let God do His thing in you. I’m still navigating life challenges (as we all are) and finding out that life is so much sweeter when I put worry aside and let God be in control. After all, God’s Got This!

I'm still in training with this, sometimes it's very, very hard!

Tune-In-Tuesday: July 16, 2019

I have no idea if this is scientifically proven (probably not!) or if it’s even relative, but one thing I’ve started noticing about walking is that I seem to go in 3-month shifts. Three months, I’ll have relatively OK walking and then for three months it’s not good at all. But watch, now that I’ve written that in black and white it won’t at all be true going forward – that just seems to be the way life works. 😉 I don’t know why I can’t let go of trying to explain to myself the ins and outs of dystonia. I’m never going to be satisfied.

The past week was relatively good. I got where I needed to go without any falls or trips or slips. I go back to my neurologist on Thursday, so we’ll see how that goes.

July 13 was my baptism birthday and on the desk calendar that my grandmother gave me it had this quote: “Miracles happen. Joy strengthens. Love conquers all!” I love it. Yes, miracles DO STILL HAPPEN. Joy strengthens and love, it does indeed conquer all.

A friend of mine posted this quote on Facebook last week and it stung a little.

It stung, because I do need heaps upon heaps of grace every single day. God grants me that grace in probably more ways than I can even imagine. So, I need, in return, to heap grace upon grace to everyone I encounter. I don’t often do that. I fail miserably. I’m wrapped up in my own little world, worrying about not falling or tripping or failing in any way. I’ve really started examining myself and where my heart is. It’s so easy to be hardened by this world with all the bad stuff that goes on not just with the world but with ourselves. I don’t want to be hardened by dystonia (or anything else in life for that matter). I’m trying to see beyond my limitations and help those who need help that I could possibly provide.

I kind of feel like this post was all over today, but I want to end with this Bible verse, because so often words fail me when I pray about things. This verse tells me that it's OK, God’s Got This (through the Holy Spirit), no matter the words spoken or left unspoken:

“In the same way, The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” Romans 8:26

Tune-In-Tuesday: July 9, 2019

I’m not exactly sure what’s really been going on with me lately, but I’m struggling with what I look like when walking. Is that not the most laughable thing you’ve heard in a long time?! It’s true though. When I see myself in those reflective doors/windows that are in/on so many buildings, I struggle with accepting what I see. I want to be elegant and graceful, however, I’m everything but. My insecurities are so very, very small in comparison to what I know others of you are going through and yet they seem so big to me at times. I find it quite embarrassing to even write about this. It should completely be a “non-issue”. I’m letting my guard down a little bit to show my real self, the self that worries about what she looks like walking. Even writing these sentences, I’m laughing, because they are so ridiculous! I’m glad God’s allowing me to see the humor in it.

God also allowed me to see the humor in falling out of bed last night. 😊 OK, so I didn’t actually fall out of bed, but it was the closest thing to it. Sometimes I have to chalk things up to me just being innately clumsy. I had gotten in bed early as I was going to watch some TV. No sooner had I gotten in bed then I realized that the DVD I wanted to watch was not in the DVD player. I got up to change it and I tried to take a step and somehow ended up falling on my knees thereby getting rug burn. All I could do was laugh. No number of walkers or canes or any other assistive devices can cure me of just being plain clumsy. My first thought was that I couldn’t truthfully say in this blog that I’ve had no falls this past week, because I just fell out of bed. 😊

I struggle with self-image, with self-doubt, and with a whole host of other insecurities that would take me days to write down. However, I also know that I'm a child of God and He knows of all my struggles, all my sins, all my imperfections and He loves me in spite of them. And for that, I'm speechless. I know He has plans for me way out from what I could possibly even imagine. He always does. He charges me to press on and so I will.

When I focus on others, rather than myself, my worries, insecurities and fears become smaller. So, I’ll focus on others more than myself. I’ll focus on what God says about me more than the lies I tell myself about me because after all: God’s Got This!

Tune-In-Tuesday: July 2

The past week has been filled with mostly good things, including my walking. It (still) amazes me how walking can be fine one minute and treacherous the next, but that's just life I guess. I had some really good days where I felt stable on my feet, but then there were also times I was a little less stable. From one day to the next, I never really know what I'm going to get (in being able to walk/not walk without issue). I'm never truly able to walk without any issue, but I get close. ;)

One thing that did happen was I missed a dose of medication. It's really not that big of a deal (I take this medication 4 times a day), but I always get nervous that (accidentally) skipping a dose will mess with my ability to walk. I thought about doubling the next dose I took, but then the medication instructions said that if a dose was skipped, I shouldn't do that, so I didn't. So far, I haven't seen any ramifications of skipping the dose.

That's really all I've got this week. No huge updates. I'm thankful and grateful for what I have and remind myself that in ALL things, God's Got This!