It’s been quite a week this past week. I’ve struggled with walking at times.
It occurred to me that I may need to explain something. It’s not because anyone’s said anything, but it just came to my mind, so I’m sharing it here. I have more issues walking in big spaces like parking lots then I do in other areas. My only reasoning for this (that I can come up with) is that in large areas like that, there's nothing I can easily grab a hold of if I felt like I was going to fall. That's why when I'm blogging you almost exclusively hear me talk about having issues with walking in to or out of somewhere. Or I'll talk about falling in a parking lot. BUT, it amazes me how God allows the body to compensate or to “auto correct” itself at times. Our bodies instinctively know what to do to keep us from falling or injuring ourselves. While we may think of things ahead of time, it’s those reactive instincts that allow us to do what we need to do. One of my instincts is to not bend my knee when walking. I don’t set out and say to myself, “Now, don’t bend your knee.” It just instinctively happens. While it’s not ideal and it causes other issues in my body, I’m thankful for the natural ability to (for the most part) keep myself upright and moving from Point A to Point B. It may not be pretty, but it gets the job done.
Four years ago, on February 16, 2016, I began my (surgical) deep brain stimulation journey. I’d begun the process months and months before, but I didn’t start the surgical part until February 16. As I’m typing this, a memory popped into my head. My neurosurgeon, Dr. Konrad told me that the surgeries would be the easy part for me. The hard part for me would start AFTER the surgeries. Boy, was he ever right! Since I have new people reading my blog, I thought I’d include a link to what I wrote about the first of these DBS surgeries. So, here’s what happened four years ago:
1 down, 2 To Go
Back to this past week. I fell again. This time though it was while pushing a grocery cart (in a parking lot - see, I fall in parking lots a lot!). It takes real talent to do that - to fall while holding on to something that’s supposed to prevent me from falling! 😉
Ya’ll Jesus answers prayers – no matter how big or small. He answers them all. On Wednesday, I was having a time. Walking was not coming naturally. I went to church that night as I do every Wednesday. We were having communion so I knew that I'd have to walk up to communion and back to my pew. So, I prayed. I prayed that I would either 1) make it up and back from communion by myself without falling, or 2) If God thought I needed help that he would provide someone to help me. As we were preparing for communion, a friend quietly slipped into the pew I was sitting in ( I was the only one in the pew - it's a lighter attendance on Wednesday nights!). She leaned over and said, “I thought you might like some help getting up to and back from communion.” I turned to her and told her. “You’re the answer to my prayer.” She said to me that she felt a nudging that she should help. That was God. While we were receiving communion, I almost cried. God cares for us. No matter how “trivial” the ask is, He’s got us.
So, while this past week hasn't been stellar, it also has not been horrible. I've seen God's grace written over everything. And how could I not? God's Got This!
Tuesday, February 18, 2020
Tuesday, February 11, 2020
Tune-In-Tuesday: February 11. 2020
Has anyone else been a slump because of the weather, or is it just me? It's been raining cats and dogs here lately (in my humble opinion, I'd rather it rain men, but, we can't always get what we want - haha!) and it's been messing with my mood. I need sunshine!!! I know, it's February and it's supposed to be cold and rainy and dreary, but I'm looking forward to the sun shining again! Saturday, it snowed (unexpectedly - at least for me. That'll teach me to pay better attention to weather reports). Since it snowed, I stayed inside and since I stayed inside, I watched TV on DVD that I received for Christmas. I got the first season of New Amsterdam. It's a medical show. One of the episodes I watched dealt with deep brain stimulation. It wasn't for what I have, but anytime I hear "deep brain stimulation", it peaks my interest. I can literally say, I've been through that.
This past week, I also "met" someone else who's had deep brain stimulation done. He had his for a condition called ataxia, not dystonia, but still - I actually talked to someone who has had it done! I only met him over Facebook messenger as he lives in Mississippi (I think!). He's the husband of a cousin of someone I know. Haha - 6 degrees of separation, right?! ;) But it was so refreshing to talk to someone who's experienced the same thing I have. And yes, this is the very first person (in the four years since I've had it done) that I've talked to that has actually had it done. We have a couple of similar things in common: we both were hoping this was an "instant miracle", which it was not - but (speaking for myself) a miracle nonetheless. We both had to have the batteries that operate our DBS systems replaced after two and half years and NOT the five years we were told they would last - haha. I think the similarities end there, but I can't explain how exciting it was to talk to someone who knows went I through. And even though I'm in the media myself, no TV show can (or has) ever depicted it completely right (and really how can they when they're only working with about 45 minutes?!). I'm just glad that it is being talked about. I told the friend that introduced me to her cousin's husband that I will ALWAYS be a proponent of DBS. It's not for everyone and some may argue that I still have problems (which I do), but it has helped me tremendously and I wouldn't bat an eye to do it all over again even knowing it's not the "instant miracle" I was praying for. I love talking to people about it.
As with each week, last week had it's ups and downs, but I didn't fall!! I'm still nursing my wound from the previous week. It's almost like a paper cut. You know how a paper cut can be so tiny, but hurt so bad? This cut is small, but every time I peel the Band-Aid off (or it comes off on it's own), it starts bleeding all over again. I probably shouldn't keep a Band-Aid on, but at least it looks better covered up - haha!
Anyway, I think that's about it for this week. Always remember - God's Got This!
This past week, I also "met" someone else who's had deep brain stimulation done. He had his for a condition called ataxia, not dystonia, but still - I actually talked to someone who has had it done! I only met him over Facebook messenger as he lives in Mississippi (I think!). He's the husband of a cousin of someone I know. Haha - 6 degrees of separation, right?! ;) But it was so refreshing to talk to someone who's experienced the same thing I have. And yes, this is the very first person (in the four years since I've had it done) that I've talked to that has actually had it done. We have a couple of similar things in common: we both were hoping this was an "instant miracle", which it was not - but (speaking for myself) a miracle nonetheless. We both had to have the batteries that operate our DBS systems replaced after two and half years and NOT the five years we were told they would last - haha. I think the similarities end there, but I can't explain how exciting it was to talk to someone who knows went I through. And even though I'm in the media myself, no TV show can (or has) ever depicted it completely right (and really how can they when they're only working with about 45 minutes?!). I'm just glad that it is being talked about. I told the friend that introduced me to her cousin's husband that I will ALWAYS be a proponent of DBS. It's not for everyone and some may argue that I still have problems (which I do), but it has helped me tremendously and I wouldn't bat an eye to do it all over again even knowing it's not the "instant miracle" I was praying for. I love talking to people about it.
As with each week, last week had it's ups and downs, but I didn't fall!! I'm still nursing my wound from the previous week. It's almost like a paper cut. You know how a paper cut can be so tiny, but hurt so bad? This cut is small, but every time I peel the Band-Aid off (or it comes off on it's own), it starts bleeding all over again. I probably shouldn't keep a Band-Aid on, but at least it looks better covered up - haha!
Anyway, I think that's about it for this week. Always remember - God's Got This!
Tuesday, February 4, 2020
Tune-In-Tuesday: February 4, 2020
This past week has been a mixed bag. I’ve had good walking days and not so good days. I fell this morning. It happened right after I got in the front door at work. I’m not sure if I tripped over the rug or my own two feet (my guess is my own two feet). I’m thankful it wasn’t on concrete or asphalt and that only one person saw me! I skinned my knee, only because the skin there is so thin anyway (from previous falls) that it always breaks if I fall. Other than that, I’m fine. In fact, I’m more than fine, I’m great. I mean, I’m alive. I have family and friends who love me, I have a job that I love. Life is good. Sometimes a fall is just what I need to “reset” myself. It allows me to look inward again and realize all the blessings I have. Today’s verse of the day on my Bible app couldn’t be more appropriate:
I was kind of having a rough day on Sunday, but from Dale to Whitney to my own niece, Hope – I had plenty of help getting around at church. So thank you, one and all who helped! I'll never forget it.
It’s February and that means that later this month it’ll be four years since I had DBS surgery (I had my head shaved on Valentine's Day!). Wow. In some respects, time truly does fly and in other respects, the days are long! But as I told someone this past week; I’d do the surgery over again in a heartbeat. It’s not been the “instant miracle” I wished it was, but life is so much better because of it. God knows what He is doing, so I’m just along for the journey. I trust that His will is perfect. I truly believe that He wants what’s best for me and right now, currently, it’s the constant communication I have with Him. Actually, I know He wants that ALL the time from me. I'm just not always as great at it as I am when I'm having humbling experiences. ;)
You know how some people say, “Oh, if I had a million dollars, that wouldn’t change the real me.”? I’m the opposite of that (just being truthful) and God knows it! I’m the closest to Him when I’m crying out to Him to heal me. So, I don’t mind not being fully healed if it means I’m closer to the Lord. Ah – who am I kidding? I’m striving to not mind not being fully healed if it means I’m closer to God. That’s a more accurate statement. I pray that I can walk without issue and I don’t ever quit praying for the miracle.
God's Got This!
Tuesday, January 28, 2020
Tune-In-Tuesday: January 28, 2020
I'm having major writer's block tonight. I can't come up with anything compelling to say. There's really nothing to update on. Everything's status quo - which is a good thing! The only real update I have is that my (routine) neurology appointment was rescheduled from January 30 to June 9.
My walking has been stable (Haha- maybe I should use a different word here. I mean, stable and walking don't really go together in the same sentence when in reference to my walking. But, again - writer's block!). Some days my walking is good and some days it's not so good, but that's my life. I'm thankful for the ability to get around!
I found this on Facebook this past week and I've been thinking about it ever since, so I thought I'd share it here:
How true a statement!
I really have no clue why I'm having such a hard time writing tonight, but maybe that's God saying, I don't really need to say much at all. So, you get a very short post from me (we can ALL be thankful for that!).
Have a great week everyone and always remember: God's Got This!
My walking has been stable (Haha- maybe I should use a different word here. I mean, stable and walking don't really go together in the same sentence when in reference to my walking. But, again - writer's block!). Some days my walking is good and some days it's not so good, but that's my life. I'm thankful for the ability to get around!
I found this on Facebook this past week and I've been thinking about it ever since, so I thought I'd share it here:
How true a statement!
I really have no clue why I'm having such a hard time writing tonight, but maybe that's God saying, I don't really need to say much at all. So, you get a very short post from me (we can ALL be thankful for that!).
Have a great week everyone and always remember: God's Got This!
Tuesday, January 21, 2020
Tune-In-Tuesday: January 21, 2020
Walking was good last week. I had problems from time to time, but overall it was pretty good. Today, I had more issues. I think it’s the weather, but it could really be anything, so who knows? I was talking with someone this past week and it dawned on me how God has built it in us to compensate when something is out of whack. I don’t choose to walk the way I do, I walk the way I walk because my body automatically reacts and compensates to keep me upright and moving (for the most part).
I compensate in other ways too. I know this is HIGHLY frowned upon by most of my friends (because I read your Facebook posts about it!), but I LOVE when someone doesn’t return their shopping cart to the shopping cart dispensary (is that what it’s called, or did I just make that up?). It means I don’t have to circle the parking lot a million times (looking like a stalker) to get a parking spot by a cart. Contrary to popular belief, the handicap parking spot is not always the best parking spot (and believe me I know, because before I had problems walking, I thought they were prime real estate. Now that I need the spot, I find it’s not always the most handicap accessible spot in the lot). I hardly ever return my shopping cart to its rightful place unless I happened to park right next to the receptacle or I’m having a pretty great day walking and think I can do it without having to hold on to something. There. I admitted it. I’m the worst! Judge away! 😉 But that’s one way in which I compensate.
Another way I compensate is to “text while walking” or basically just look at my phone while walking. I know, another “no, no.” What does this do for me? Well, for one, it “distracts” me enough so that I’m more likely to walk better. I’m not focused on who may be watching me walk. It also gives me an “excuse” for walking slower – because let’s face it – I walk SO SLOW. I shouldn’t care what people think of me (and there are times that I really don’t care), but I get anxious and using a phone just helps me compensate a little more.
I thank God for the many ways He has allowed me to compensate.
Next month, will be 4 years since I’ve had deep brain stimulation surgery. I had three surgeries in three weeks back in 2016. One on Feb 16, one on Feb 23 and the last on Feb 29. I think this year is significant for me because it’s actually Leap Year and it was on Leap Year 2016 that I had my final surgery. I re-read some of my blog posts from back then. I’m SO thankful that I blogged about it because I find them fascinating to re-read. One of the posts that I re-read was one from Dec 4, 2015. It was the night my neurologist called to tell me that the DBS Conference had been held that day. My neurologist brought my case up again (this was the 2nd or 3rd time) to all in attendance and this time, I was approved for DBS. They were all in agreement. First, they all agreed that my case was unique, but then they all agreed that if I was still game, DBS surgery would be the next step. To re-read that post – it felt like it was just yesterday. I remember where I was, what I was doing and everything about that night. If your new to my story or to this blog, feel free to go back and read blogs from my past. You’ll get the whole story. I don’t leave out much. 😉
I hope everyone’s having a blessed week. Thank you for reading and following along on this journey. Always remember, God’s Got This!
I compensate in other ways too. I know this is HIGHLY frowned upon by most of my friends (because I read your Facebook posts about it!), but I LOVE when someone doesn’t return their shopping cart to the shopping cart dispensary (is that what it’s called, or did I just make that up?). It means I don’t have to circle the parking lot a million times (looking like a stalker) to get a parking spot by a cart. Contrary to popular belief, the handicap parking spot is not always the best parking spot (and believe me I know, because before I had problems walking, I thought they were prime real estate. Now that I need the spot, I find it’s not always the most handicap accessible spot in the lot). I hardly ever return my shopping cart to its rightful place unless I happened to park right next to the receptacle or I’m having a pretty great day walking and think I can do it without having to hold on to something. There. I admitted it. I’m the worst! Judge away! 😉 But that’s one way in which I compensate.
Another way I compensate is to “text while walking” or basically just look at my phone while walking. I know, another “no, no.” What does this do for me? Well, for one, it “distracts” me enough so that I’m more likely to walk better. I’m not focused on who may be watching me walk. It also gives me an “excuse” for walking slower – because let’s face it – I walk SO SLOW. I shouldn’t care what people think of me (and there are times that I really don’t care), but I get anxious and using a phone just helps me compensate a little more.
I thank God for the many ways He has allowed me to compensate.
Next month, will be 4 years since I’ve had deep brain stimulation surgery. I had three surgeries in three weeks back in 2016. One on Feb 16, one on Feb 23 and the last on Feb 29. I think this year is significant for me because it’s actually Leap Year and it was on Leap Year 2016 that I had my final surgery. I re-read some of my blog posts from back then. I’m SO thankful that I blogged about it because I find them fascinating to re-read. One of the posts that I re-read was one from Dec 4, 2015. It was the night my neurologist called to tell me that the DBS Conference had been held that day. My neurologist brought my case up again (this was the 2nd or 3rd time) to all in attendance and this time, I was approved for DBS. They were all in agreement. First, they all agreed that my case was unique, but then they all agreed that if I was still game, DBS surgery would be the next step. To re-read that post – it felt like it was just yesterday. I remember where I was, what I was doing and everything about that night. If your new to my story or to this blog, feel free to go back and read blogs from my past. You’ll get the whole story. I don’t leave out much. 😉
I hope everyone’s having a blessed week. Thank you for reading and following along on this journey. Always remember, God’s Got This!
Tuesday, January 14, 2020
Tune-In-Tuesday: January 14, 2020
To be honest, I wasn't going to blog tonight. I've been in a funk and I just didn't feel like writing, but after putting it off for a few hours, I decided to go ahead and write anyway. :)
It's been a pretty uneventful week walking-wise and that's a good thing. It doesn't mean I haven't had issues (those are a daily occurrence for the most part) it just means I haven't fallen and things are pretty status quo.
Something happened today that I did find kind of funny. I was walking to my cube at work loaded down with my laptop, purse, lunch bag...and a lady passes me in the hallway and stops. She exclaims, "Oh my gosh! Do you need help?!" I smile and tell her no. She's a new employee and she was so sweet to stop and ask, but up until that point, I thought I had been walking pretty good! I guess it's all perspective, right?
Yesterday morning, I awoke to a nose-bleed. I used to never get nose-bleeds and now I seem to get them all of the time (OK, that might be a slight exaggeration!). Later in the day, I was at my desk at work and got another one. What gives?!
Anyway, I think that's it for this week. Always remember, God's Got This!
It's been a pretty uneventful week walking-wise and that's a good thing. It doesn't mean I haven't had issues (those are a daily occurrence for the most part) it just means I haven't fallen and things are pretty status quo.
Something happened today that I did find kind of funny. I was walking to my cube at work loaded down with my laptop, purse, lunch bag...and a lady passes me in the hallway and stops. She exclaims, "Oh my gosh! Do you need help?!" I smile and tell her no. She's a new employee and she was so sweet to stop and ask, but up until that point, I thought I had been walking pretty good! I guess it's all perspective, right?
Yesterday morning, I awoke to a nose-bleed. I used to never get nose-bleeds and now I seem to get them all of the time (OK, that might be a slight exaggeration!). Later in the day, I was at my desk at work and got another one. What gives?!
Anyway, I think that's it for this week. Always remember, God's Got This!
Tuesday, January 7, 2020
Tune-In-Tuesday: January 7, 2020
Happy New Year! It's hard to believe we're already 7 days into year 2020. I still have Christmas decorations up, although at the moment my house is in complete disarray because I'm in the process of taking them down. I usually leave Christmas up until Epiphany (which is January 6).
I had a great week last week - still celebrating Christmas and New Year's Day. It's been fun taking some time away from work to celebrate with friends and family. Routine is also good and I'm thankful for it as well. I haven't had any major issues with my walking, but there are moments. They're just that though - moments. I try not to let them define me. That's easier said than done for me, but at least I'm trying.
I went to a store the other day where there were no carts to hold on to until I got into the store. I could (and most of the time do) focus on the fact that it took me forever to get in to the store and forever to get back out to my car and that I probably inconvenienced people as they had to stop (in their cars) to wait until I crossed, however, tonight I'm taking a different approach: I walked in to and out of that store on my own two feet and didn't fall. I made it! I will confess that once i got to my car, I sat there a few minutes watching people walk all over the parking lot with the greatest of ease and I got a little jealous. But, God had me realize how far I've come and that having a little difficulty walking is by no means the worst thing ever. I was reminded TWICE today by two different people of how far I've come. I must have needed to hear that today! :)
I'm a member of a dystonia group on Facebook and the other day they posted an article about how those with dystonia may experience sleep disruptions. I didn't actually read the article, but that headline must have been rolling around in my brain because last night was pretty much sleepless. I don't think it really had anything to do with dystonia, but I was tired last night so I went to bed at 9:30/10 pm. I woke up at 1 am and couldn't fall back asleep for anything. I read my Bible. I thought surely three chapters of Leviticus (NOT Lamentations, which I think I told my dad I was reading. You know, they both start with "L" and are in the Old Testament - ha!) would put me to sleep. It did not. Finally at 2am I got up and started putting away Christmas decorations. I worked up until the time I had to get ready for work. I should be EXHAUSTED by now! I did have a right-after-lunch slump, but I got up from my desk at work and walked around for a few minutes and then was fine. I still have miles to go before all my Christmas decorations are put away, but hopefully tonight I will sleep!
Also with dystonia, repetitive motions trigger spasms. That's why a lot of musicians deal with dystonia and why "writer's cramp" is a dystonia. Putting decorations away, I'm experiencing some repetitive motions which cause my hands to cramp or my legs to feel like jelly. This could also just be a sign that I'm getting old. ;)
I have to say though, that I am still extremely blessed - even when walking is hard. I am able to live a rather normal life. Yeah, I have some issues, but in the scheme of themes, I can do (almost) anything I put my mind to. God has blessed me in SO MANY ways. I have the most awesome job that does not require me to be on my feet or walking all day. I have a home that I love (and that, even though purchased before any of my problems began, also happens to be on one level - God provides!). I have a family and friends who love me for me. And, I have God who protects me always. I'm blessed!
I go back to my neurologist on January 30 for a 6 month check-up.
I hope all of you have a wonderful week to this brand new year and always remember - God's Got This!
I had a great week last week - still celebrating Christmas and New Year's Day. It's been fun taking some time away from work to celebrate with friends and family. Routine is also good and I'm thankful for it as well. I haven't had any major issues with my walking, but there are moments. They're just that though - moments. I try not to let them define me. That's easier said than done for me, but at least I'm trying.
I went to a store the other day where there were no carts to hold on to until I got into the store. I could (and most of the time do) focus on the fact that it took me forever to get in to the store and forever to get back out to my car and that I probably inconvenienced people as they had to stop (in their cars) to wait until I crossed, however, tonight I'm taking a different approach: I walked in to and out of that store on my own two feet and didn't fall. I made it! I will confess that once i got to my car, I sat there a few minutes watching people walk all over the parking lot with the greatest of ease and I got a little jealous. But, God had me realize how far I've come and that having a little difficulty walking is by no means the worst thing ever. I was reminded TWICE today by two different people of how far I've come. I must have needed to hear that today! :)
I'm a member of a dystonia group on Facebook and the other day they posted an article about how those with dystonia may experience sleep disruptions. I didn't actually read the article, but that headline must have been rolling around in my brain because last night was pretty much sleepless. I don't think it really had anything to do with dystonia, but I was tired last night so I went to bed at 9:30/10 pm. I woke up at 1 am and couldn't fall back asleep for anything. I read my Bible. I thought surely three chapters of Leviticus (NOT Lamentations, which I think I told my dad I was reading. You know, they both start with "L" and are in the Old Testament - ha!) would put me to sleep. It did not. Finally at 2am I got up and started putting away Christmas decorations. I worked up until the time I had to get ready for work. I should be EXHAUSTED by now! I did have a right-after-lunch slump, but I got up from my desk at work and walked around for a few minutes and then was fine. I still have miles to go before all my Christmas decorations are put away, but hopefully tonight I will sleep!
Also with dystonia, repetitive motions trigger spasms. That's why a lot of musicians deal with dystonia and why "writer's cramp" is a dystonia. Putting decorations away, I'm experiencing some repetitive motions which cause my hands to cramp or my legs to feel like jelly. This could also just be a sign that I'm getting old. ;)
I have to say though, that I am still extremely blessed - even when walking is hard. I am able to live a rather normal life. Yeah, I have some issues, but in the scheme of themes, I can do (almost) anything I put my mind to. God has blessed me in SO MANY ways. I have the most awesome job that does not require me to be on my feet or walking all day. I have a home that I love (and that, even though purchased before any of my problems began, also happens to be on one level - God provides!). I have a family and friends who love me for me. And, I have God who protects me always. I'm blessed!
I go back to my neurologist on January 30 for a 6 month check-up.
I hope all of you have a wonderful week to this brand new year and always remember - God's Got This!
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