Tune-In-Tuesday: February 23, 2021 FIVE YEARS!!!!!!!!!!

In my last entry, I thought maybe I was through using my walker and then the next day came and I lost my nerve and used the walker again. I was frustrated at myself, but I didn't want to fall, so I used it. This is not just a one-way journey. It has lots of backslides, but I'm growing through it all, so that's the positive. Wednesday, Thursday, Friday, Saturday - every day, I used the walker, but then Sunday came. I had the walker and my cane in the back seat of my car as I drove into the parking lot at church. I'm notorious for losing my nerve walking in the church parking lot (even though I park in the closest handicap parking space available!). I didn't know what I would do. Would I push through my fear or would I wait another day to do that? Well, I pushed through my fear. I did use my cane, but I did NOT use my walker. My Sunday school teacher came up beside me and asked if I needed help. I just asked that he walk beside me, you know, just in case! And he did. And I walked in without having to grab ahold of him - yay!! I walked out of church later without fear! Yesterday (Monday), I walked completely walker AND cane free - PRAISE JESUS!!!!!!!!!

Today's a big day because it's been 5 YEARS since my deep brain stimulation surgery. It was February 23, 2016 when that surgery occurred. FIVE YEARS AGO!!!!  Some days that feels like just yesterday and other days it feels longer then that - ha! If you'd like to read what I wrote about the DBS surgery, you can do that here: It is Not Brain Surgery!: 2 Down, 1 To Go

To celebrate this momentous occasion, I slept in today and then explored some of the Foothills Parkway in the Smoky Mountains. It was good to just get away from the day-to-day. The weather was perfect - in the 60's and the views reminded me once again of how awesome God is. 

How it was going 5 years ago on the left to how it's going today on the right

Feeling wonderfully blessed

After my drive on the Foothills Parkway, I came home and wrote a thank you letter. Yes, a thank you letter - not a note. A note is something you write a few sentences in, this was a letter. I wrote it to my neurologist, Dr. T. I should have written it five years ago, but better late than never! Since it's the 5 year anniversary of the surgery, I was reminiscing and re-reading through my blog posts and it occurred to me that I never put down in words what exactly Dr. T. meant/means to me. He's not the neurosurgeon, so he didn't do the surgery, but he was with me before, during and after the surgery. Yes, of course he's my doctor and it's his job, but over the course of the past 5 years, he's done so much (and continues to do so much) that I thought it was time to send him a thank you letter. He's informed me, he's advocated for me, he's cheered me on, he's been frustrated with and for me - he deserves a letter! Three pages later, I finished the letter. What's that about me writing a book again? I most certainly have the words for it! I also need to write my mom a thank you letter. Again, after re-reading through my blog posts, she's my hero. I mean she's the one that took me to doctor after doctor (if they were out of state). She's been with me through all the surgeries, all the pain, everything. Dad held down the fort at home and he's seen me through everything too, but Mom was the one sleeping on chairs in hospital rooms, holding my hand through the worst night of my life when I wanted to die (because the pain was so bad). I owe her a hand-written 3 page thank you letter too, but it will have to be another day because I have writer's cramp now (fun fact: that's a form of dystonia too!). I should write Dad a thank you letter too because he's cleaned up more of my puke then anyone else, I think - including the infamous Christmas Eve when I puked all over his and Mom's driveway. He was too tired to clean it up that night (after preaching at three services), so he decided to leave it until the next day. But in the morning, he found it had frozen. There's nothing worse then cleaning up someone else's puke - so thank you, Dad!

I had a check-up with my neurologist, Dr. T. yesterday. And since it's been 5 years and I'm on my third battery,  he said that the next time I have to have the battery replaced we should highly consider doing a rechargeable battery. I told him I didn't think I could have a rechargeable battery since I've gone with the non-rechargeable one since the very beginning. He debunked that theory! He said I was too young to be having surgery every two and a half years. I completely, whole-heartily agree! He is at a loss though on why my batteries only seem to last two and half years. I'm not on the highest setting. I'm not doing anything "wrong" - they just seem to deplete faster in me. He said that the rechargeable batteries last 15-20 years. The downside is that I have to recharge it. I asked how often that would need to be done. He said it depended on how much "juice" was being used but some patients have to recharge it every couple of days and others can wait a week or so. I'm not completely sold on the idea of having to recharge it that often, but I have time and I'll do research on it. Who knows, maybe two and half years from now the recharge rate will increase or there will be other options. He also asked about my shoulder pain. I told him it's still there, although since I haven't been able to work-out since my surgery it's barely bothered me. He asked that I get my primary care physician to look at it. Once I told him, I'd already talked to my PC about it and he thought it was muscular, he made me promise to ask for an X-ray, just to be 100% sure everything is OK. He said he could do an X-ray, but he'd still have to send me to someone else if the X-ray showed anything, so I promised, I would have my PC get an X-ray of it.

Dr. T. also showed me how to turn my DBS device off. I'm ashamed to say, I didn't know how to do that. It turns out to be super easy to do. He just reminded me that if I ever do turn it off, to remember to turn it back on! Now I can have EKG's (one thing needed and/or requested before surgeries) and my system won't mess them up anymore. 

One thing Dr. T. commented on at my appointment was the fact that I could tell the deep brain stimulation works. How can I tell? Because of how I felt/walked before the battery being replaced via how I feel/walk now. It's like night and day I tell you! He said that he's still frustrated (me too, me too!) that he can't get my foot to relax anymore then it is, but is happy that I'm happy to know that the DBS does work for me. We (Dr. T. and I) are both HUGE perfectionists. And I emphasize the word huge. Yes, we both want more. I am nowhere near "perfectly" walking and I want that. He wants that for me. BUT - at the same time, gosh am I blessed mightily to be the way I am today. Five years ago I was using a walker everywhere I went. I fell all the time. I was miserable. Yesterday, I walked into the neurologist's office (however precarious it was - it was pouring down rain and the wind was gusting) on my own two feet without a walker or a cane. I didn't fall. So, while I want "perfect" walking (and I'll still strive for that), I am blessed beyond measure by deep brain stimulation. Until my dying breath, I will advocate for it.

I have my one month post-op appointment with the neurosurgeon (well, rather his PA) on Thursday (Feb 25). Hopefully after that appointment I can get the all clear to start working out again. I've got my brother's wedding to get in shape for and since I'm the OLDEST in the wedding party (this is what happens when there are 11 years (and two other brothers) that separate us) - and, well, I just want to look and feel and walk my best. :)

Five years has flown by and at the same time dragged on! Here's to the next five years and the five years after that and well, here's to LIFE. It's not easy, but boy is it worth it. Thanks for continuing on this journey with me! God's Got This!

Tune-In-Tuesday: February 16, 2021

It's been 3 weeks (and a day) since my (latest) battery replacement surgery for my deep brain stimulation device and I'm feeling pretty good! The last three (out of seven) steri-strips came off my surgical scar this morning and the scar looks pretty great, if I do say so myself. In fact, I was just telling someone before the surgery that my scar had just about faded (from battery replacement surgery 2 and 1/2 years ago) and then I have to get a new one. But this one is pretty good right off the bat. I guess those internal stitches really, really work - yay!!!

I can also really feel the electricity working. I was getting a little discouraged that I was still using the walker after two weeks, but just yesterday and continuing today I'm feeling more confident in walking. It remains to be seen if the walker is a complete memory of the past, but things are looking up! One of my worries is being fearful of walking without the walker - of being dependent on the walker. This was one of my greatest fears 5 years ago after the DBS surgery and it's once again a fear. But, I've done it before (pushed past my fear and walked without the walker), so with God's help, I know I can do it again. God's got this after all, right!? Yes, yes He does! 

Mom and I went shoe shopping the other day for my brother's wedding in April. For just the little while we were there, I ended up getting a blister on my foot. I mean, who does that?! Obviously, me! I blame myself too because they came from shoes I picked out - ha! Needless to say I did not get that pair of shoes.

With each new day, I get stronger. I can absolutely, 100% tell the battery is fully charged and my DBS system is working on all cylinders once again - halleluiah!  Sometimes things need to go bad for you to realize how good you've actually got it! Thank you for the reminder, God!

I see my neurologist next Monday (February 22) and the neurosurgeon on February 25. This was not on purpose. It's my 6 month routine check-up with my neurologist and my one month post surgery check-up with the neurosurgeon. :) 

Today, I'm also celebrating the 5 year anniversary of my first surgery for DBS back on February 16, 2016. That first surgery was to get the bone markers (better way of describing them then screws - which they actually were) placed to hold my head in place for the "big" surgery the following week. For those of you who may be new around here and want to read what I wrote about that day and that surgery, you can do so here: It is Not Brain Surgery!: 1 Down, 2 To Go

For me, it was fun to go back and re-read about that day. There are many things I remember and so many more things that I forgot about! Here's a photo from back then of the screws in my head. They did not remain there. They were removed after the big, awake surgery was done.

There were two in the front of my skull and two in the back.

Here's the custom 3-D designed "helmet" that those bone markers were attached to. I got to keep this as a souvenir, since it was designed specifically to fit my head. 

What should I do to celebrate today? I'm definitely NOT shaving my head. Maybe, I'll just enjoy having long hair again. I'll enjoy feeling (more) stable again. I'll praise Jesus that I'm five years out (from the initial DBS surgeries) and almost one month out (from the latest battery replacement surgery) and for all the sweet mercies He and He alone has provided. I'm feeling incredibly blessed and so very joyful.

Me, from two days ago on Valentine's Day 2021

 God's Got This - Yes, He does!

Five Years Ago Today: NO HAIR!

 Five years ago today on February 14, 2016 I started preparing for my deep brain stimulation surgery. OK, actually the preparing started months before with doctors appointments and tests and all that, but I consider February 14 the start of the surgery part of it. Most people celebrate Valentine's Day with gifts to their loved ones, but it was on February 14, 2016 that I lost all my hair. My hair. My crowning jewel. Probably one of the biggest defining features of me. I loved my hair. Yes, of course it could be unruly. It could give me fits, but it was MY hair. I'm not going to compare my loss of hair to someone who is battling cancer because if I did compare it, they would win every time. I knew my hair would grow back. I knew the second I lost it, it was already growing back. In fact, every week, for the the three weeks I had surgery, my neurosurgeon commented that he had to cut my hair every single time because it would grow that much in a week. He said I was the rarity. Most people could go the three weeks without having to have him shave their head every time, but not me! So, there is NO comparison with those who have or who are losing their hair to cancer - that's in a whole other realm of loss. BUT, I did lose all of my hair. ALL.OF.MY.HAIR. Every last piece of it. God took a break in counting the hairs on my head for a month or so - haha! I had really long hair too. My neurosurgeon was extremely sensitive and compassionate when speaking with me about losing it. In fact this is what I wrote on my blog post from January 8, 2016: "Dr. K. looked at me and he said something to the effect of 'When I saw your beautiful hair, I didn't want to broach the topic of what I'd have to do to it. I was stalling as long as possible.'" In subsequent meetings with Dr. K. and on the day of surgery, he told all the nurses and doctors that he felt horrible that I had to shave all my hair off. This is a picture of me from January 29, 2016 (one of the last taken with all my hair). The guy in the picture with me is Don Wildman from Travel Channel. :) Maybe I shouldn't have worn brown because my hair kind of blends in, but I didn't know it would be one of the last pictures of me with hair either!

February 14, 2016, was a Sunday, just like it is today in 2021. I went to church and then out to eat with my family afterwards. After that, I came home and my friend Carrie came over. I was reminiscing with Carrie this morning about that day. It was an emotional afternoon for both of us! Who knew cutting all your hair off would be so emotional?! I guess you just don't know unless you've done it. For some reason we didn't take a picture of me with all my hair. We started taking pictures at each interval of hair loss once it got shoulder length. Here are those pictures:

Shoulder length front

Shoulder length back

Above the shoulder front

Above the shoulder back

Side bob view

Side bob view

Getting shorter front

Getting shorter back

Really short front

Really short back

GONE!! Front

GONE!! Back

This is my shunt scar. Turns out, I didn't need a shunt!

The aftermath!  

So every year on February 14, I take a picture of myself and my hair. It's  just a fun way to commemorate the day I had my head shaved! By the way, yes - you do still see hair on my head in the above "bald" pictures, but they shaved it even closer during the surgeries. Here's how bald I actually was. This was right after the "awake" surgery:

Here are the hair growth pictures through the years including this year. Thanks to the pandemic, I have now grown my hair to around the length it was before shaving it all off.

February 14, 2017

February 14, 2018

February 14, 2019

February 14, 2020

February 14, 2021

Today marks 5 years. How has it been 5 years since the "beginning" of the deep brain stimulation surgeries? Whoever coined the phrase "The days are long but the years are short.", knew what they were talking about. FIVE WHOLE YEARS!!! They haven't been easy years, but they've been blessed years. I'll use another cliché and say, this isn't a sprint, it's a marathon, but, I wouldn't have it any other way. I've learned so much in these past 5 years. Every obstacle, every fall, every "hardship", it's all made me stronger. Not only has my hair grown so much in these past 5 years but my faith in God has grown by leaps and bounds. My determination and resolve have grown. I've grown. It's been and continues to be an adventure. I'm not really an adventure-seeking person. I'm reserved and an introvert. But with God by my side, I've been on the most adventurous, thrill-seeking, death-defying, scary-as-all-get-out ride and He's kept me safe! He's even gotten me to smile and admit that this adventure (which I would have NEVER chosen for myself) is kind of fun. Well, maybe not fun, but definitely adventurous. There have been fun aspects. I've gotten to do things, meet people and be in situations I never would have dreamed of and it's all made me a better person. Sometimes you just have to hold on for dear life while God takes you on this wild and crazy ride called LIFE!

And to this day, I still proclaim: God's Got This!

Tune-In-Tuesday: February 9, 2021

Hi all! Today marks 2 weeks (and 1 day) since my latest battery replacement surgery. Overall, I'm doing well! I've only lost one of the seven steri-strips though - so I have 6 more to go - haha! I haven't lost the walker either. :( That's kind of a bummer, but these things take time, right? Usually by 2 weeks I can tell if the electricity is working in my leg and foot or not. Interestingly enough, the past couple of days my leg and foot have felt weaker then they did even just a few days ago. I have no idea what that's about. Maybe it's psychological? Like - I know I should be walking OK now, but I'm somehow preventing myself from doing that by putting myself in a box of "you SHOULD be walking fine now!!" So, I just need to take a deep breath, let it out slowly and NOT WORRY. It will come when it comes. Even just writing that made me relax!

I'm not allowed to workout until my return to the neurosurgeon in a couple of weeks and it's driving me crazy. I'm not allowed to even do yoga yet. On one hand, I've enjoyed the break (from exercise, not yoga!!) and on the other, I want to workout so bad!!! But, in due time I'll be back. 

I've been reminiscing a bit these past few days as I've realized that the 5th anniversary of my deep brain stimulation surgery is coming up starting on February 16 (it was a three week process of surgeries). On a side-note that means I've had three batteries in 5 years! I re-read an entry to my blog that I had written on February 7, 2017 (almost one year to the day after my surgeries) and it was such an encouragement. If you'd like to read what I wrote back then you can do that here: It is Not Brain Surgery!: Shouting From the Rooftop: February 7. God is so good. He was, He is and He will remain good. 

My brother and sister-in-law got me an Amazon Firestick for Christmas so I've been enjoying watching Amazon Prime and Netflix. I found a show on Netflix called Lenox Hill. It's a reality show I guess you could say as it follows several doctors/surgeons that work at Lenox Hill hospital in NYC. Several of the doctors that the 8-episode series follows are neurosurgeons. It was fascinating to watch. I know medical shows are not everyone's cup of tea, but I enjoyed it. All I have to say is that I am so, so blessed. I am blessed that I have dystonia and nothing else. Yes, I said I am blessed to have dystonia. Blessed because I don't have brain cancer. That disease is ruthless and devastating and absolutely horrible. I am blessed. This dystonia is a drop in the bucket compared to other diseases and conditions involving the brain. And while I'm on the topic of TV shows, after Lenox Hill, I found another show - Virgin River to binge on. It's a drama and I've fallen in love with it. I only have a few more episodes to go (like 3) before I've watched the whole series so far, but I think (unlike Lenox Hill) it's a drama that is still creating new seasons - or, at least I hope! I don't want it to end.

As for my back/side pain that I mentioned in my last post: It's still there slightly but is much, much, much better!! It's almost gone actually. I can still feel it at certain times, but it's so much better. I didn't do anything to make it go away, it just went away on its own. I also learned that it's probably not my sciatic. I spoke to someone at church who said my pain was in the wrong spot. Anyway, if it gets worse, I'll deal with it then, but for now, it's almost gone which I am most thankful for!

I am once again a card-carrying member of Medtronic (the company who creates the batteries for the deep brain stimulation device.) as I got my updated card in the mail. With each new battery comes a new card with the information for my battery on it. I can show this card when I have to skip going through metal detectors at airports and stores to alert those in authority that I have a medical condition that prevents me from doing that. 

I read something the other day that caught my eye. It was an article that said that the battery in the new iPhone 12 could interfere with batteries made for heart pacemakers. While I don't have a heart pacemaker, I do have a "brain pacemaker". Could the battery effect it? Hmm...something to think about (but not worry about because 1) I don't have an iPhone 12 and 2) the article was for heart pacemakers - so no need to worry now - ha!).

I had a captive audience the other day as the children of some very close family friends wanted to see pictures of me bald - haha! Even my nieces wanted to see. So I pulled them out from when I was bald five years ago and they were amazed. I realized that I do love sharing my story. Yes, this is an ongoing condition that I have and it's constantly changing and evolving, but I love getting the word out about it, about deep brain stimulation and just telling my story. It's not always pretty. It doesn't wrap up in a pretty bow. It's messy and complicated and (at times) embarrassing. It's confusing and frustrating and (at times) lonely and self-isolating. BUT, it's my story. It's my life. It's beautiful through all the mess. It's mine. 

Thank you for reading and always remember - God's Got This!

 

Tune-In-Tuesday: February 2, 2021 One week (and one day) Post-op

 It's been one week and one day since I've had the battery replacement surgery for my deep brain stimulation device. I can definitely tell that it's working, although I'm not back to 100 %. The question is, was I really ever 100%?! Ha! I mean, I'm not back to where I was before the battery needed replacing. Although I walk around my house without a cane or a walker, I am still using the walker to get around outside of the walls of my home. I did a "dry run" as I called it on Saturday. I went to the Christian bookstore and used neither a cane or a walker to get around. While I did it, I also realized that I do still need the support of the walker. Sunday night I was having spasms in my leg and foot. Yesterday, I walked to my mailbox and back without a cane or walker, but it was pretty precarious. About halfway to the mailbox I was thinking I should have used at least my cane. By then, it was a little too late. ;) I made it without falling, but not without praying that I didn't fall. Today's walking has not been the best, but it's also not been the worst. I'm getting there. It's a slow process. As much as I wish it to be faster, I just have to be patient. (On a side note: I know I've shared this before, but I do recognize why we are called "patients". It's because we have to be patient while getting better!)

About a month ago (before the surgery), I was at church and I went to sit down in my seat and my back/hip started hurting. It hurt throughout the service but eventually went away that night. It was weird. My best guess is it's sciatica, BUT it only hurts in one spot. The pain doesn't radiate down my leg. Since it only lasted less then a day, I didn't give it a second thought. Spring forward to this past Thursday and the pain came back and it hasn't left. UGH. I'm not quite sure what to do about it. Does it need to be X-rayed? Do I go see my primary care doctor about it? Will it go away on its own? Is something broken? It's crossed my mind too that this could be a result of the way I walk, but why is it just showing up now? How do I even describe how it hurts? So many questions. I know, I WAY over think things. My mom suggested I go to the chiropractor, but, unfortunately, that's one thing I can not do after having deep brain stimulation. This isn't related at all to a car accident I had with my mom when I was 19 in which I fractured my pelvis because it's the opposite hip/back that's hurting. Sleeping has not been fun because I've tried NOT to sleep on the new battery and yet, it feels so much better to put pressure on my hip/back which is on the same side that the battery is on. So...this shall be continued when I figure out what I'm going to do about it. It may just be that I'm getting old. I'm a mess ya'll! ;) 

As I mentioned above, there are some things that every deep brain stimulation patient has to avoid (for the rest of our lives) after the surgery. They are:

- MRIs of any part of the body except the brain.

- Any ultrasound around the battery device

- Any tens unit procedure around the battery device

- Chiropractic work

- Diathermy

- Metal detectors that you have to walk through, like at the airport, courthouse, schools, etc. If I have my Medtronic ID card with me, I can pull that out and explain why it's unsafe for me to walk through this device. They usually just use the wand on me instead.

- Arc welding

- Scuba diving or being under water deeper than 33 feet

- Sky diving

I was able to remove the bandages from my surgery site last Friday. Under the bandage, I have 7 steri-strips. I'm supposed to let those just fall off and as of today none of them have. 

Just so there's nothing left to the imagination: that "lump" below the stitches is the battery. :)

A few weeks ago a friend of mine told me her daughter brought up my battery replacement surgery to her biology teacher and her class and they were intrigued. I told my friend that I am always available for show and tell - ha! I'm a walking science experiment!

I hope everyone has a wonderful week and always remember - God's Got This!