Last week's post did it!! I gave a not-so-subtle hint (haha!) that I wanted a tour of the ER where my brother works. His wife just happened to see my post and read the blog to him. The next night, he called me and said he could give me a tour the next day! So on December 21, I got an (almost) all-access tour of UT's ER. It was beyond awesome and the best part was that I wasn't a patient!! I told Stanton that that could have been my Christmas present. I met some of the doctors and nurses he works with. I brought them homemade chocolate chip cookies. I got to see the nurses lounge and the admittance desk. I got to see where the doctors hang out and where their lockers and mailboxes are. The best part was I got to see the trauma room. We had to wait a bit to see it as a trauma came in while I was there, but once the trauma was clear, Stanton took me to see the room. That's where all the action takes place. On one hand, I was a little surprised at how little the room was, but on the other hand, I was enthralled by what I saw. One doctor was surprised at the fact that I wanted to tour the ER. He said that touring a museum would be more fun. Not to me, not to me! Haha. I got asked TWICE if I was also a doctor (besides Stanton) and if I was coming to work there. Stanton told me later that most people who tour the ER are doctors and are coming to work there. I was surprised how big the ER was. They have somewhere around 70 beds/rooms for patients. Stanton said it looked like they were really busy the day I toured. I got to see the ambulance bay. I told one of Stanton's colleagues that in my business we have a phrase: "It's cable, not cancer.", meaning no one will die if we make a mistake, but in Stanton's line of business, I guess that's not quite true! I didn't take that many pictures, because of HIPPA laws and such, but I was able to snap a few and as weird as I am, I love looking at them - haha. I'm not going to lie, I compared everything to the TV shows ER and Chicago Med. I'm also not going to lie about looking to see if there were any single cute doctors around. :) A girls got to do what a girls got to do. I had such a fun, fascinating time. A huge thank you to Stanton (and Aubrey too) for giving his big sister a tour!
This past week has been absolutely wonderful. I took time off from work before Christmas because my co-worker is taking this week off. I was able to get a lot of things done, including one day where I spent 6 hours wrapping presents. I also did something new-to-me at the recommendation of one of my doctors: yoga. I wasn't sure it would be for me. I knew nothing about it nor how it could help me. Thankfully, for the time being, I'm doing it with a private instructor who is modifying it to help with the dystonia. I have to say, I had my second session today and I love it. It may not be for everyone, but, even only 2 sessions in, it's helping with my balance and flexibility and it's also helping me stress less! So maybe it is a good thing. ;)
Walking has been getting better and better. Of course, there are definitely moments when it's not so good, but then there are days like today where I've walked almost as good as I could ask for! I walked into yoga today normally. I didn't have to start/stop. I wasn't stiffed-legged and I actually bent my knee. My feet landed on the ground the way they are supposed to and didn't curl up or spasm. I walked into Kroger without having to use a shopping cart to hold on to and low and behold once I was back in the parking lot, I decided that I felt good enough to actually return the cart to the cart receptacle and walk back on my own! Now all of you who dislike when people leave carts in the parking spaces should be happy! I walked in/around/out of Walgreens without having to use a cart. It's little to most, but HUGE to me. I don't boast just to boast though. God's doing this. He may be using the deep brain stimulation to help, but I know that He's behind every firm step I take, every confident stride I make. All glory goes to Him. And even when I'm having a not-so-great walking day, I'll still praise Him. He knows I learn better when I'm on my knees anyway. ;) I have good and bad days, just like we all do, but when I have extra good days, I want all to know who gives them to me: God. When I have extra bad days, I want all to know who gets me through them: God. Sure, there were times this past week when I wasn't so steady on my feet and there were other times when my confidence waned, but God kept me from falling!
One quick story from last Wednesday night: I was at church and I was walking from where our mailboxes are to the sanctuary (for those that go to my church and know the path I'm speaking of). I was doing "really well" and then I looked up and saw someone watching me and fear took over and I instantly felt the need to stiffen up. I shouted playfully "Are you watching me walk?". He said yes he was and he was marveling at how well I was doing. As soon as I knew someone was watching me though, I got stage fright and wasn't as steady on my feet as I had been moments earlier. It's just another "issue" I'm working on overcoming!
It's an ongoing thing, this walking of mine, but I am confident that God will continue His work in me both physically, emotionally and spiritually.
To God be the Glory because after all - God's Got This!
Tuesday, December 26, 2017
Tuesday, December 19, 2017
Tune-In Tuesday: December 19
December 19, 1999 was a Sunday. I was 19 years old and a sophomore in college. I had just come home a couple of days before for the Christmas break and was enjoying catching up with everyone at church and that's the last thing I remember about that day.
On that day, Mom and I got into a pretty bad car accident after church on our way to my grandparents house after we picked up pizza for lunch. My dad was still at church and actually heard the accident, but drove right past us a little while later because we were down in a ravine and not visible from the road. Mom said I was knocked unconscious from the beginning and that she started to worry when I started making gurgling noises. I was told they had to use the "jaws of life" to get us out. Mom was taken to the nearest hospital per my dad's request, but the paramedics made the decision to take me to the University of Tennessee because they are a level one trauma center. (Incidentally, this is now the same ER that my brother, Stanton, works at as an ER doctor!).
Ya'll, my favorite TV show ever is "ER". I love anything medical. It fascinates me. I've always wanted to ride in an ambulance with lights and sirens and the one time I get to do it, I don't remember a single second of it!! So, if you're a paramedic and are reading this, could I please get a ride in an ambulance with lights and sirens when I'm not the patient?! ;) I'd also love, love, love a tour of the ER (again, when I'm NOT the patient! This is also a hint for my brother, although I think he's too busy to read this blog!). I would love every second of it! I would love to be a doctor or a nurse except that I'm terrible in math and science. Oh well. I don't remember much of my ER visit. I remember that my back hurt (turns out it was just from laying on the backboard). The only other thing I remember was overhearing someone say "surgery" and I freaked out. They quickly said it was only an option and it turns out, I didn't have to have it. And that concludes my ER experience. No George Clooney.
It turns out that Mom and I had identical injuries, we just mirrored each other. We both had fractured pelvises. Mine was on the right and hers was on the left. I'm very thankful that I was "left in the dark" on what fractured pelvises meant until I was past the point of concern. Turns out, it's very easy for someone with a fractured pelvis to develop a blood clot and die instantly. Thank the Lord that didn't happen to me or Mom!
For 6 days after December 19, Mom and I were separated in two different hospitals and my poor dad, during one of the busiest weeks of the year for him (he's a pastor of a church), had to juggle visiting both of us, taking care of my brothers at home, and prepare for Christmas worship. We were discharged from the hospital on Christmas Eve. People in our church really stepped up and helped us out. My grandmother spent the nights with me in the hospital and a good friend, Cheri, spent the days with me. I remember certain things about that time, like my nurse. He was a male first of all and I was a little self-conscience in the beginning, but that lasted all of 2 minutes. I was in so much pain, I didn't care. He was football player huge. He could pick me up in one fell swoop and lay me back down on the bed just as easily. Back then, I had gained more than the "freshman 15", so picking me up was quite the feat - ha! He was the sweetest human being though. I remember that he and his wife had just had a son and it was going to be his first Christmas that year. I also remember the occupational therapist or maybe he was a physical therapist. Either way he was HOT!! I hadn't brushed my teeth in days and I remember Cheri slipping me a piece of gum when she saw how cute he was and how "in love" I was with him. His cuteness made up for the torture he put me through in just standing up. ;) I remember how Cheri had her daughter, Jill (who's a year younger than me) go out and buy a new sweater because the one I was wearing when we got in the accident was cut off by the ER doctors and destroyed. I remember friends coming by and seeing me. I remember (and still to this day have) the teddy bear that Marvin bought in the hospital gift shop that got me through those days.
Why am I writing about something that happened 18 years ago? Well, it may or may not have precipitated everything that's going on with me now. There's no way to actually tell 100%, but maybe my being knocked unconscious that day jarred something in my brain to activate the dystonia I deal with today. Doctors have theorized that it could have happened, but no one can say for sure. I myself have thought about it and theorized about it, but I end up driving myself nuts trying to pinpoint what could have caused the dystonia. I only write about it again now because today is December 19 and the 18th anniversary of the accident. It's also the anniversary of when I had a shunt put in my brain back in 2008. At that time doctors thought I had hydrocephalus. It turns out, lots of things happen to me on December 19 - sheesh!
Here I am though on December 19, 2017 and I'm writing with a grateful heart. I'm blessed to be alive. I'm blessed to be walking. I'm just simply blessed. This past week has been pretty good. Like I said in my post last week, I'm seeing subtle positive results in my walking. It's not every day in every situation, but I am seeing results. I haven't fallen in the past week and I've gotten more confident. I do know that Satan's around trying to trip me up (both literally and figuratively), but I also know that God's got a lot more power then Satan and He's kept me safe. I've said this before and I'll say it again: I pray more and harder than I ever have when I'm walking from point A to point B. Maybe that's the way God wants it. If He chooses to heal me completely so that I have no issues whatsoever walking, I'll shout it from the rooftops what He has done for me. But if He decides that where I'm at right now is where I'm supposed to be, I'll also shout it from the rooftops because after all He knows what He is doing. I do so hope and pray though that He does heal me COMPLETLEY!!!!
It's funny and humbling and wondrous how different people have different perspectives. It's also refreshing and life-affirming. People who haven't seen me in a long time are amazed at how I get along without a walker or cane. I, myself, always want more. I'm not walking "normal" yet. But then again, what is normal? I keep reminding myself what Jack , an elder at my church, once told me: "There's no such thing as bad walking. Either there's walking or not walking and you're walking." Yes, I am. Even if it's not quite how I want to be walking, it's still walking and I'm doing it. Even if you can tell that there's something wrong, I'm still walking without a cane or walker. Some of that is my stubbornness, some of it is the deep brain stimulation, some of it is medication, but ALL of it is God.
I've written about this before, but I'm going to write about it again. ;) My absolute favorite Christmas song ever is, "Mary Did You Know". I love the whole song, but my favorite lyrics are:
"The blind will see
The deaf will hear
The dead will live again
The lame will leap
The dumb will speak
The praises of The Lamb"
"The lame with LEAP". Did you get that part?! It brings chills to me every time I hear that chorus and especially that line. The lame with leap!!
God's doing mighty things in me. The physical is just the icing on the cake. Again, whether I walk with no issues or not, He's working inside me to know Him better, to praise Him better, to love Him better. I'm incredibly blessed. I may not walk like everyone else, but that's what makes me unique, right?! My story is being written by the Almighty God and I can't think of a better person to write it. He's brought me so far and the story's not done. I can't wait to see what lies ahead. Of course, I'll have down days and days when I want to take the pen out of God's hands and put it in mine, but I know that leaving the pen in His hands and relying on Him to get me through tough days is the best plan. God's got me (and you!) in the palm of His hand.
Merry Christmas everyone! May you remember the TRUE meaning of Christmas and that God's Got This!
On that day, Mom and I got into a pretty bad car accident after church on our way to my grandparents house after we picked up pizza for lunch. My dad was still at church and actually heard the accident, but drove right past us a little while later because we were down in a ravine and not visible from the road. Mom said I was knocked unconscious from the beginning and that she started to worry when I started making gurgling noises. I was told they had to use the "jaws of life" to get us out. Mom was taken to the nearest hospital per my dad's request, but the paramedics made the decision to take me to the University of Tennessee because they are a level one trauma center. (Incidentally, this is now the same ER that my brother, Stanton, works at as an ER doctor!).
Ya'll, my favorite TV show ever is "ER". I love anything medical. It fascinates me. I've always wanted to ride in an ambulance with lights and sirens and the one time I get to do it, I don't remember a single second of it!! So, if you're a paramedic and are reading this, could I please get a ride in an ambulance with lights and sirens when I'm not the patient?! ;) I'd also love, love, love a tour of the ER (again, when I'm NOT the patient! This is also a hint for my brother, although I think he's too busy to read this blog!). I would love every second of it! I would love to be a doctor or a nurse except that I'm terrible in math and science. Oh well. I don't remember much of my ER visit. I remember that my back hurt (turns out it was just from laying on the backboard). The only other thing I remember was overhearing someone say "surgery" and I freaked out. They quickly said it was only an option and it turns out, I didn't have to have it. And that concludes my ER experience. No George Clooney.
It turns out that Mom and I had identical injuries, we just mirrored each other. We both had fractured pelvises. Mine was on the right and hers was on the left. I'm very thankful that I was "left in the dark" on what fractured pelvises meant until I was past the point of concern. Turns out, it's very easy for someone with a fractured pelvis to develop a blood clot and die instantly. Thank the Lord that didn't happen to me or Mom!
For 6 days after December 19, Mom and I were separated in two different hospitals and my poor dad, during one of the busiest weeks of the year for him (he's a pastor of a church), had to juggle visiting both of us, taking care of my brothers at home, and prepare for Christmas worship. We were discharged from the hospital on Christmas Eve. People in our church really stepped up and helped us out. My grandmother spent the nights with me in the hospital and a good friend, Cheri, spent the days with me. I remember certain things about that time, like my nurse. He was a male first of all and I was a little self-conscience in the beginning, but that lasted all of 2 minutes. I was in so much pain, I didn't care. He was football player huge. He could pick me up in one fell swoop and lay me back down on the bed just as easily. Back then, I had gained more than the "freshman 15", so picking me up was quite the feat - ha! He was the sweetest human being though. I remember that he and his wife had just had a son and it was going to be his first Christmas that year. I also remember the occupational therapist or maybe he was a physical therapist. Either way he was HOT!! I hadn't brushed my teeth in days and I remember Cheri slipping me a piece of gum when she saw how cute he was and how "in love" I was with him. His cuteness made up for the torture he put me through in just standing up. ;) I remember how Cheri had her daughter, Jill (who's a year younger than me) go out and buy a new sweater because the one I was wearing when we got in the accident was cut off by the ER doctors and destroyed. I remember friends coming by and seeing me. I remember (and still to this day have) the teddy bear that Marvin bought in the hospital gift shop that got me through those days.
Why am I writing about something that happened 18 years ago? Well, it may or may not have precipitated everything that's going on with me now. There's no way to actually tell 100%, but maybe my being knocked unconscious that day jarred something in my brain to activate the dystonia I deal with today. Doctors have theorized that it could have happened, but no one can say for sure. I myself have thought about it and theorized about it, but I end up driving myself nuts trying to pinpoint what could have caused the dystonia. I only write about it again now because today is December 19 and the 18th anniversary of the accident. It's also the anniversary of when I had a shunt put in my brain back in 2008. At that time doctors thought I had hydrocephalus. It turns out, lots of things happen to me on December 19 - sheesh!
Here I am though on December 19, 2017 and I'm writing with a grateful heart. I'm blessed to be alive. I'm blessed to be walking. I'm just simply blessed. This past week has been pretty good. Like I said in my post last week, I'm seeing subtle positive results in my walking. It's not every day in every situation, but I am seeing results. I haven't fallen in the past week and I've gotten more confident. I do know that Satan's around trying to trip me up (both literally and figuratively), but I also know that God's got a lot more power then Satan and He's kept me safe. I've said this before and I'll say it again: I pray more and harder than I ever have when I'm walking from point A to point B. Maybe that's the way God wants it. If He chooses to heal me completely so that I have no issues whatsoever walking, I'll shout it from the rooftops what He has done for me. But if He decides that where I'm at right now is where I'm supposed to be, I'll also shout it from the rooftops because after all He knows what He is doing. I do so hope and pray though that He does heal me COMPLETLEY!!!!
It's funny and humbling and wondrous how different people have different perspectives. It's also refreshing and life-affirming. People who haven't seen me in a long time are amazed at how I get along without a walker or cane. I, myself, always want more. I'm not walking "normal" yet. But then again, what is normal? I keep reminding myself what Jack , an elder at my church, once told me: "There's no such thing as bad walking. Either there's walking or not walking and you're walking." Yes, I am. Even if it's not quite how I want to be walking, it's still walking and I'm doing it. Even if you can tell that there's something wrong, I'm still walking without a cane or walker. Some of that is my stubbornness, some of it is the deep brain stimulation, some of it is medication, but ALL of it is God.
I've written about this before, but I'm going to write about it again. ;) My absolute favorite Christmas song ever is, "Mary Did You Know". I love the whole song, but my favorite lyrics are:
"The blind will see
The deaf will hear
The dead will live again
The lame will leap
The dumb will speak
The praises of The Lamb"
"The lame with LEAP". Did you get that part?! It brings chills to me every time I hear that chorus and especially that line. The lame with leap!!
God's doing mighty things in me. The physical is just the icing on the cake. Again, whether I walk with no issues or not, He's working inside me to know Him better, to praise Him better, to love Him better. I'm incredibly blessed. I may not walk like everyone else, but that's what makes me unique, right?! My story is being written by the Almighty God and I can't think of a better person to write it. He's brought me so far and the story's not done. I can't wait to see what lies ahead. Of course, I'll have down days and days when I want to take the pen out of God's hands and put it in mine, but I know that leaving the pen in His hands and relying on Him to get me through tough days is the best plan. God's got me (and you!) in the palm of His hand.
Merry Christmas everyone! May you remember the TRUE meaning of Christmas and that God's Got This!
Tuesday, December 12, 2017
Tune-In Tuesday: December 12
Hi ya'll! It's super late for me to be starting this blog post (It's 8:43pm on Tuesday), so we'll see how much I write tonight, but it is Tuesday, so I feel compelled to write - ha! It's December 12, which means Christmas is in FULL GEAR!! I just got home from having dinner at my brother and sister-in-law, Stanton and Aubrey's house. The whole family (minus a brother and a niece) were there. I love these gatherings!! I love the Christmas season. It's full of joy.
This past week has been good! No falls - yay. There was some confidence building too - always good! It's not perfect, but, I'm blessed. I'm thankful that the Lord allows me to see how blessed I truly am.
Yesterday, I did something I haven't done in years. Seriously, I think the last time I did it I was a teen and I certainly haven't done it since I've had issues walking. I bowled. I was terrifically horrible at it, but I did it! And the best part - I didn't fall!! I was slow walking up and back, but I didn't fall!!! My department at work had our Christmas party yesterday at this place called the Main Event where there was bowling. So, I bowled and it was awesome. I didn't even care that I lost miserably!!! That "56" score in the picture below is me. Oh well! It was still fun! After I bowled, I played Skee Ball and arcade games and I threw basketballs. I was fiercely competitive in playing air hockey. I had fun. I did steer away from Laser Tag and the Ropes Course, but baby steps, right?! I built up a sweat.
I've seen subtle improvements in my walking, but I'm still praying for a miracle. God can do anything. He makes the blind see and the deaf hear. He makes the lame leap. (Yes, my favorite Christmas song is, "Mary Did You Know?" and yes, those words come from it!) So, yes, I pray for a miracle. Some may laugh at that, but that's fine. I know that God can do anything. And even if He wants me to remain how I am today, I'll be OK. I do know one thing: He hasn't gotten me this far along to just abandon me. There's always a lesson to be learned in everything that happens in life. We all have our "stuff" to deal with. I'm learning (and this will probably be a life long lesson!) that I can't just let life pass me by. If I don't seize the moment, it'll be gone. So, while there will still be days when I just want to lay in bed, I need to seize opportunities to live life to the fullest despite any limitations I have. I'm preaching to myself as I write these words. I'll need to come back and read them when life seems completely overwhelming. I'm fearful of a great deal of things. If you know me well, you know this. But what is there to fear, but fear itself? I know the CREATOR OF THE WHOLE UNIVERSE. Why do I fear?! Because I'm human and sinful, that's why. But God is greater than any fear. I must step out on faith (both literally and figuratively).
I hope each and everyone of you is having a wonderful Christmas season. Thank you for continuing to walk this journey with me. Thank you for encouraging me. Thank you for loving me. Thank you for praying for me. There have been so many times that I don't know what to pray for. I feel like a broken record. It's in those times that I am so thankful for people "standing in the gap" for me and praying for me. I hope that in some small way, I can show the world God's love as you have shown it to me.
I know that God's timing is perfect, so I wait. I know in all things that God's Got This!
This past week has been good! No falls - yay. There was some confidence building too - always good! It's not perfect, but, I'm blessed. I'm thankful that the Lord allows me to see how blessed I truly am.
Yesterday, I did something I haven't done in years. Seriously, I think the last time I did it I was a teen and I certainly haven't done it since I've had issues walking. I bowled. I was terrifically horrible at it, but I did it! And the best part - I didn't fall!! I was slow walking up and back, but I didn't fall!!! My department at work had our Christmas party yesterday at this place called the Main Event where there was bowling. So, I bowled and it was awesome. I didn't even care that I lost miserably!!! That "56" score in the picture below is me. Oh well! It was still fun! After I bowled, I played Skee Ball and arcade games and I threw basketballs. I was fiercely competitive in playing air hockey. I had fun. I did steer away from Laser Tag and the Ropes Course, but baby steps, right?! I built up a sweat.
I've seen subtle improvements in my walking, but I'm still praying for a miracle. God can do anything. He makes the blind see and the deaf hear. He makes the lame leap. (Yes, my favorite Christmas song is, "Mary Did You Know?" and yes, those words come from it!) So, yes, I pray for a miracle. Some may laugh at that, but that's fine. I know that God can do anything. And even if He wants me to remain how I am today, I'll be OK. I do know one thing: He hasn't gotten me this far along to just abandon me. There's always a lesson to be learned in everything that happens in life. We all have our "stuff" to deal with. I'm learning (and this will probably be a life long lesson!) that I can't just let life pass me by. If I don't seize the moment, it'll be gone. So, while there will still be days when I just want to lay in bed, I need to seize opportunities to live life to the fullest despite any limitations I have. I'm preaching to myself as I write these words. I'll need to come back and read them when life seems completely overwhelming. I'm fearful of a great deal of things. If you know me well, you know this. But what is there to fear, but fear itself? I know the CREATOR OF THE WHOLE UNIVERSE. Why do I fear?! Because I'm human and sinful, that's why. But God is greater than any fear. I must step out on faith (both literally and figuratively).
I hope each and everyone of you is having a wonderful Christmas season. Thank you for continuing to walk this journey with me. Thank you for encouraging me. Thank you for loving me. Thank you for praying for me. There have been so many times that I don't know what to pray for. I feel like a broken record. It's in those times that I am so thankful for people "standing in the gap" for me and praying for me. I hope that in some small way, I can show the world God's love as you have shown it to me.
I know that God's timing is perfect, so I wait. I know in all things that God's Got This!
Tuesday, December 5, 2017
Tune-In Tuesday: December 5
Perseverance and Patience.
Calmness and Courage.
Four things I long for; four things I fail at daily!
But it’s OK, because God’s growing me in these areas.
Last Thursday, November 30, I had my appointment with Dr. Tolleson (my neurologist) and he programmed a new frequency in my deep brain stimulation device. Now it’s a game of waiting and testing – perseverance and patience!! I told a co-worker, it was fun at first – this testing different levels of electricity, but now I just want it to work!
The appointment went well. I had to laugh to myself though when the nurse wanted to take my blood pressure. It’s always so high because I stress about getting to appointments on time and I just have a lot of adrenaline running through me. You’d think that after all the doctor visits I’ve been to, I wouldn’t get anxious or worried, but that’s just not the case. Anyway, I told her, “It’s going to be high.” So she decided to wait on taking it and did other things first. It worked!! When she did take it, it was 112 over 58. See, I knew if I had a few minutes just to calm down, it would affect my blood pressure! ;) CALMNESS!
Dr. Tolleson wanted to see me walk. I don’t like this part. For those that see me every day and those that know me really well, you know that I don’t like people watching me walk. I get very self-conscience about it. I know, I know. The whole purpose of me seeing a neurologist in the first place is because I can't walk right. He can’t help me if he can’t see me walk, but it still doesn’t make walking for him (or anyone else) any easier! So I walked for him. He observed that I walk on the outside of my feet. As I was walking, I ran into (not literally!), my old neurologist, Dr. LeForce. Talk about a little awkward. Dr. LeForce is awesome. I loved him as a neurologist, but since my DBS neurologist (Dr. Tolleson) moved to Knoxville and both of them joined the same practice, I had to choose who I’d see. I chose Dr. Tolleson because he can adjust all my settings. Dr. LeForce was great about that though as he was when we “ran into” each other on Thursday. He asked how I was doing and said I looked great (I think all doctor’s are trained to say that, right?!). Then Dr. Tolleson exclaimed, “Oh, right! I totally forgot that you sent her to us in Nashville!” After we talked with Dr. LeForce a little longer, Dr. Tolleson wanted me to walk again for him one more time. As I began, he said, “Now, walk normally.” I burst out laughing and gave him a little eye roll as I turned toward him and exclaimed, “Seriously?!” He started laughing himself when he realized what he had said and exclaimed, “Well, you know what I mean!” A little laughter does the soul good! I told Dr. Tolleson that I feel more comfortable when I walk where I know there’s something to grab ahold of then I do in wide open spaces. I’m extremely stubborn though and won’t use any assistive devices (outside of the DBS) like a walker or cane. He smirked at that, but didn’t tell me I should use them. He said (as he previously had said) that the toe surgery I had definitely set me back. I knew that, but I’m hopeful that it will help in the future.
What I love so much about Dr. Tolleson is that he and I want the same thing: perfection. I know that perfection is unattainable on this earth, but I still want as close as possible to it as I can get. He wants the same thing. We are both type A. He was asking me how walking had been and I said it was OK. He finished my sentence when I said, it’s OK, but I want and he chimed in, “perfection”. When will I ever be satisfied with just OK? Probably never!
Dr. Tolleson was a little surprised that I hadn’t tried Frequency D. I left the frequency as he had set it the last time I saw him which was Frequency B. I admitted that there was a part of me that was afraid to change it. I knew on Frequency B that I could at least get around with minimal to no falls, even if it wasn’t really the way I want to or need to walk. My fear was that if I turned to Frequency D and it didn’t work that when I turned it back to B I’d have to wait at least another two weeks for my body to adjust to it again and there was really only one month between my appointments. So, basically, fear got the best of me in that situation. I did fall twice within a month, but that’s a better record than I’ve had before.
Dr. T. checked all my “leads” to make sure everything was working perfectly. I joked with him that by the time we found the frequency that works for me it would be time to change the battery in the DBS device (it usually has to be changed every 5 years give-or-take as that is its lifespan). He smiled and I said, “that’s usually my luck – I’m just warning you!” At one point while he was programming, he said to let him know if I felt any shocks. I thought he was joking at first, but then he asked if I was seeing any bright lights. I said I wasn’t and wanted to know why he asked me. He said he was right by my optic nerve. Those sorts of things snap me back to reality that yes, indeed he is playing with my brain. He tried one frequency that made my chest feel tight. I think it was just because that’s where the battery for the device is located, but it freaked me out a little. He backed off of that frequency. I asked if anything he did could make me hallucinate. I quickly said, “I’m not hallucinating right now, I just want to know if that's a possibility.” He reassured me that nothing he did could cause hallucinations – whew!
During the appointment, Dr. Tolleson asked if I’d ever had Botox. My answer was yes. The very first neurologist I ever went to told me I had cerebral palsy and said he could fix me right up with Botox. He was astonished that I had no improvement every time I came back to him. He would inject it into different muscles, but nothing ever happened. After months of this, he finally had me get a blood test which revealed I had an antibody towards Botox. It wasn’t until years later when I went to the Mayo Clinic that doctors there told me that he probably caused me to build up an antibody to the Botox by injecting me so much with it. They tried a different strand of Botox, but got the same results: NOTHING. For some reason, Botox doesn’t work for me. Oh well.
I told Dr. Tolleson that when I’m nervous, anxious or excited my dystonia symptoms get worse. He confirmed that that will happen. UGH. If I’m relaxed, I walk so much better.
Dr. Tolleson programmed a new frequency: A and by the time I left, I was already seeing some improvement. As I started to walk down the hall to check-out, Dr. Tolleson asked how it felt and I said that I was just about to tell him that I could see some difference. He smiled and said “fingers crossed”. I’m cautiously optimistic. He says it’ll take at least two weeks to see any real improvement.
So, I patiently persevere while calmly having courage. Wait, who am I kidding? I'm nowhere near that – yet! I’m thankful that I have a God who loves me is spite of my whining and complaining - in spite of me being the opposite of calm or courageous. So I wait and pray and have hope that there WILL be much improvement.
“I know that you can do all things; no purpose of yours can be thwarted” Job 42:2 NIV
God’s Got This!
Calmness and Courage.
Four things I long for; four things I fail at daily!
But it’s OK, because God’s growing me in these areas.
Last Thursday, November 30, I had my appointment with Dr. Tolleson (my neurologist) and he programmed a new frequency in my deep brain stimulation device. Now it’s a game of waiting and testing – perseverance and patience!! I told a co-worker, it was fun at first – this testing different levels of electricity, but now I just want it to work!
The appointment went well. I had to laugh to myself though when the nurse wanted to take my blood pressure. It’s always so high because I stress about getting to appointments on time and I just have a lot of adrenaline running through me. You’d think that after all the doctor visits I’ve been to, I wouldn’t get anxious or worried, but that’s just not the case. Anyway, I told her, “It’s going to be high.” So she decided to wait on taking it and did other things first. It worked!! When she did take it, it was 112 over 58. See, I knew if I had a few minutes just to calm down, it would affect my blood pressure! ;) CALMNESS!
Dr. Tolleson wanted to see me walk. I don’t like this part. For those that see me every day and those that know me really well, you know that I don’t like people watching me walk. I get very self-conscience about it. I know, I know. The whole purpose of me seeing a neurologist in the first place is because I can't walk right. He can’t help me if he can’t see me walk, but it still doesn’t make walking for him (or anyone else) any easier! So I walked for him. He observed that I walk on the outside of my feet. As I was walking, I ran into (not literally!), my old neurologist, Dr. LeForce. Talk about a little awkward. Dr. LeForce is awesome. I loved him as a neurologist, but since my DBS neurologist (Dr. Tolleson) moved to Knoxville and both of them joined the same practice, I had to choose who I’d see. I chose Dr. Tolleson because he can adjust all my settings. Dr. LeForce was great about that though as he was when we “ran into” each other on Thursday. He asked how I was doing and said I looked great (I think all doctor’s are trained to say that, right?!). Then Dr. Tolleson exclaimed, “Oh, right! I totally forgot that you sent her to us in Nashville!” After we talked with Dr. LeForce a little longer, Dr. Tolleson wanted me to walk again for him one more time. As I began, he said, “Now, walk normally.” I burst out laughing and gave him a little eye roll as I turned toward him and exclaimed, “Seriously?!” He started laughing himself when he realized what he had said and exclaimed, “Well, you know what I mean!” A little laughter does the soul good! I told Dr. Tolleson that I feel more comfortable when I walk where I know there’s something to grab ahold of then I do in wide open spaces. I’m extremely stubborn though and won’t use any assistive devices (outside of the DBS) like a walker or cane. He smirked at that, but didn’t tell me I should use them. He said (as he previously had said) that the toe surgery I had definitely set me back. I knew that, but I’m hopeful that it will help in the future.
What I love so much about Dr. Tolleson is that he and I want the same thing: perfection. I know that perfection is unattainable on this earth, but I still want as close as possible to it as I can get. He wants the same thing. We are both type A. He was asking me how walking had been and I said it was OK. He finished my sentence when I said, it’s OK, but I want and he chimed in, “perfection”. When will I ever be satisfied with just OK? Probably never!
Dr. Tolleson was a little surprised that I hadn’t tried Frequency D. I left the frequency as he had set it the last time I saw him which was Frequency B. I admitted that there was a part of me that was afraid to change it. I knew on Frequency B that I could at least get around with minimal to no falls, even if it wasn’t really the way I want to or need to walk. My fear was that if I turned to Frequency D and it didn’t work that when I turned it back to B I’d have to wait at least another two weeks for my body to adjust to it again and there was really only one month between my appointments. So, basically, fear got the best of me in that situation. I did fall twice within a month, but that’s a better record than I’ve had before.
Dr. T. checked all my “leads” to make sure everything was working perfectly. I joked with him that by the time we found the frequency that works for me it would be time to change the battery in the DBS device (it usually has to be changed every 5 years give-or-take as that is its lifespan). He smiled and I said, “that’s usually my luck – I’m just warning you!” At one point while he was programming, he said to let him know if I felt any shocks. I thought he was joking at first, but then he asked if I was seeing any bright lights. I said I wasn’t and wanted to know why he asked me. He said he was right by my optic nerve. Those sorts of things snap me back to reality that yes, indeed he is playing with my brain. He tried one frequency that made my chest feel tight. I think it was just because that’s where the battery for the device is located, but it freaked me out a little. He backed off of that frequency. I asked if anything he did could make me hallucinate. I quickly said, “I’m not hallucinating right now, I just want to know if that's a possibility.” He reassured me that nothing he did could cause hallucinations – whew!
During the appointment, Dr. Tolleson asked if I’d ever had Botox. My answer was yes. The very first neurologist I ever went to told me I had cerebral palsy and said he could fix me right up with Botox. He was astonished that I had no improvement every time I came back to him. He would inject it into different muscles, but nothing ever happened. After months of this, he finally had me get a blood test which revealed I had an antibody towards Botox. It wasn’t until years later when I went to the Mayo Clinic that doctors there told me that he probably caused me to build up an antibody to the Botox by injecting me so much with it. They tried a different strand of Botox, but got the same results: NOTHING. For some reason, Botox doesn’t work for me. Oh well.
I told Dr. Tolleson that when I’m nervous, anxious or excited my dystonia symptoms get worse. He confirmed that that will happen. UGH. If I’m relaxed, I walk so much better.
Dr. Tolleson programmed a new frequency: A and by the time I left, I was already seeing some improvement. As I started to walk down the hall to check-out, Dr. Tolleson asked how it felt and I said that I was just about to tell him that I could see some difference. He smiled and said “fingers crossed”. I’m cautiously optimistic. He says it’ll take at least two weeks to see any real improvement.
So, I patiently persevere while calmly having courage. Wait, who am I kidding? I'm nowhere near that – yet! I’m thankful that I have a God who loves me is spite of my whining and complaining - in spite of me being the opposite of calm or courageous. So I wait and pray and have hope that there WILL be much improvement.
“I know that you can do all things; no purpose of yours can be thwarted” Job 42:2 NIV
God’s Got This!
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