Tune-In-Tuesday: August 1, 2023

Physical therapy is still going well. I had another session (because of a cancellation) this past Thursday. When I told my physical therapist I loved the stretches/exercises she gave me to do at home, she laughed and said no one ever says that they love their "homework"! I love it because I feel the stretches and "exercises" working. Yeah, I don't always love making the time to do them, but after I've done them, I feel like I've done something to help my body. Hopefully, I'll continue to like them - ha! My next PT appointment is this Friday.

I also started working out again at home. I ride a recumbent stationary bike. I hadn't worked out since November 28, 2022 (I keep a record, that's how I knew the date). I was extremely busy the month of December with Christmas things (as most people are!) and helping to take care of my mom. Then, after my mom died, grief took over and working out was the last thing I wanted to do. But Saturday I woke up and had the urge to work out, so I did! It had been 8 months and 1 day since my last work out.  I've kept it up - working out every day (and yes, I realize it's only Tuesday!) and it's been really, really good. Hopefully, I'll continue to keep it up. :)

Look at what I got in the mail the other day! My godmother found these and sent them to me. They are just perfect! I haven't seen anything with "God's Got This" on it. I customized a shirt once with the slogan on it but haven't seen anything else. They definitely brought a smile to my face and will be used! The first one is a file folder (if you can't tell). Thank you, Aunt Kim! 

That's it for this update! I hope everyone is having a wonderful week. Always remember...God's Got This!

Tune-In-Tuesday: July 25, 2023

Wonders never cease - I'm actually updating this blog on a Tuesday!

I've technically had two physical therapy sessions since I last wrote a blog post, so I thought I'd write a little update. I had my initial PT appointment last Friday. It went way better than I expected - ha! I don't know what I was expecting really, but I left feeling a lot better about doing PT than I initially thought I'd feel about it. I was honest with my physical therapist and told her that I was not looking forward to this. She understood. But her vibe, the office vibe - all the vibes, put me at ease. I also like the fact that she works with neuro patients and knows how to deal with those issues as well as the physical body. I had already met her once before (probably about a year ago) as she does go once a week to my neurologist's office and evaluates patients there that my neurologist thinks would benefit from PT. Her name is Courtney. So, we met on Friday and did the initial evaluation and get-to-know-yous. When it came time to schedule some appointments, she was completely booked this week and is out of the office next week, so the earliest I could get my next appointment for was for August 8. However, she did say that if she had any cancellations, she would have her office call me. Well, yesterday morning, her office called and said that there had been a cancellation for today and asked if I wanted to come in. So, I went in this morning at 8:45am. It was SO good! I feel very encouraged and very "let's do this!". She had me doing several things and sent me home with two sheets of exercises. I'm so happy that I got in this week because now I have exercises to do while waiting for my next session. I found it funny that some of the exercises I actually already do in yoga. :) 

One thing that intrigued me was that she said that my hips needed strengthening. I'm not sure why that intrigued me. I guess I thought they were strong, but come to find out, they aren't. We will be working on them a lot. Another thing that intrigued me was that she didn't get mad that I walk "incorrectly" with my cane. Maybe that's because I was the one to say that I know I walk incorrectly with it. When walking with a cane, you are supposed to hold it in the hand that is opposite of the side that is giving you issues. I (like Dr. House on the television show House, M.D.) hold my cane in my left hand and my left side is the side that has issues. There is a reason that I do that - it's because it inadvertently helps to calm my leg down (most of the time). Courtney told me I might want to try using foam toe spacers (kind of like what is used when getting pedicures). They may give me enough sensory stimulation (my words) to help me be able to walk with less issue (kind of like how I can walk on soft sand with no problem). 

My personal goal for physical therapy is to leave stronger than I was when I first walked in. I want to be able to walk without a walker again. I don't even necessarily care if I have to walk with a cane; I just really want to be able to ditch the walker. On my initial evaluation on Friday, Courtney had me walk without anything while she timed me. Then she had me walk the same distance with the walker while she timed me again. It took me 21 seconds to walk without anything and only 9 seconds to walk with the walker. While I knew I was much slower walking without the walker, it was also an eye opener to know I was that much slower! She asked me today how confident I was when I walked with the walker, and I told her a 10 out of 10 (that's for the most part; there are times when I am less confident) and then she asked me how confident I was when I walked with the cane, and I said 6 out of 10. I hope in PT to build my confidence as I build my strength.

No matter what happens - whether I can walk walker-free and/or cane free again or whether I still have to use them, I know everything will be OK, because after all, God's Got This! 

Tune-In-Tuesday (But on Friday): July 14, 2023

I had an appointment with my neurologist, Dr. T. on Wednesday, July 12 to get Botox injections. It was also the first time I'd seen him since before having my battery replaced in my deep brain stimulation system. He surprised me by being the one to come and get me from the lobby (instead of his nurse). I think he did it so he could observe my walking. :) He did watch every step I took and then apologized for watching me - haha. He knows I hate when people watch me walk. I told him he shouldn't be sorry because I know that's how he can evaluate and determine what's best for me (even though I still dislike it!). Once we got into the exam room, he asked how the surgery went and how the rechargeable battery was going. I told him the surgery went fine, but that I felt like it took longer this time to see the effects of it, to which he replied that by the time I had the surgery my old battery was probably really, really dead, so it didn't surprise him that it took my body longer to see any of the effects of the new battery. As for the rechargeable battery - I told him it was interesting. He asked what I meant by that, and I told him it's just a learning experience. It's not as easy and carefree as having the non-rechargeable battery. I have to recharge myself every week. It's not as fun as it sounds - ha! Sometimes I lose connection with the charger and the battery, and I have to find it again and although that may sound pretty easy (and it is for the most part), it's just frustrating. The charger is beeping at me, and my device says it's searching, and I KNOW I am placing the charger right over the battery and it's still not finding the signal. OK, rant over! It really is a MINOR inconvenience in the scheme of things. It's just different. I have to make myself do it. I thought it would be all fun and games, and I could watch TV or check Facebook. While I do all those things, it's the fact that I have to charge myself up and I have to lie there that makes me not want to do any of it. Again, I know I sound like I'm complaining, but I'm really not (OK, maybe I am a little bit). This is how I vent - by writing it all out. I know people have it a lot worse off than I do and overall, I am SO thankful for the advancements in technology that allow me to charge myself up every week.

Back to my Botox injection appointment. Dr. T. checked my DBS battery, and it was good (it should be as it's brand new and I recharged it the night before). He checked my surgery scar (because I asked him if it looked OK - one side is "brighter" (for lack of a better word) and it worried me a bit). He said it looked great to him. He asked if there had been any oozing and I said no. He asked if I had been doing any excessive arm movements and I said no. So, everything is good with the scar. On to the actual Botox- he asked if it worked last time. I said I thought it had. Last time was the first time that he not only injected into my left posterior tibialis but also into the medial and lateral left hamstring. We decided to do the same on Wednesday. When he injected it into the tibialis this time, it hurt. He must have brushed up against the nerve because it felt like it was going through the bottom of my foot. He apologized when I winced and said he knew that must have hurt. I like a doctor who can sympathize! He asked about my summer so far (probably trying to distract me!) and I asked about his. He then had me lie down on the exam table so he could inject the hamstring. That went much better than the tibialis. My hamstring is fatter than my tibialis and there's probably no nerve near it. :) It was a really good appointment. I walked out of there much steadier than I walked in. That doesn't mean that it stayed that way. I started to feel some of the effects of the Botox that night and felt that my leg was weak. I didn't feel confident walking, but since then, it goes up and down. I feel confident walking; I don't feel confident walking. To please Dr. T., I'm going to start physical therapy. I'm not doing it just for Dr. T., but he's the main reason - ha! I go for my initial appointment next Friday, July 21 (which also happens to my grandmother's 97th birthday). Before I left Dr. T.'s office, he said that he was really happy that I'm going to PT. He said he thinks it'll help a lot. Next week (July 19) will mark the 6th week after my surgery, which means I get to work out again and have no physical restrictions from the surgery. To be honest, I haven't worked out in 6 months. I told a friend that being told I can't work out for 6 weeks after surgery has made me want to work out so bad! I really do believe reverse psychology works on me - haha! I had all the time in world and couldn't get motivated to work out and then I am told I can't do it and that's all I've wanted to do. 

I am hopeful that I will get steadier on my feet and that exercise and physical therapy will help me. So, that's the update for now. I'll check back in after I have a few physical therapy sessions under my belt to update on how that is going. I hope everyone is having a wonderful summer. Always remember...God's Got This! 

Tune-In-Tuesday (but on a Monday): June 19, 2023 - Post Surgery Appointment Update

Hi all! Here's an update on what's been going on with me since my last post on June 8.

Don't laugh (or do, it is kind of funny!) but I created a charging station at home for my DBS system. It cracks me up that I literally have to be "charged up" at least once a week, if not more. This rechargeable battery came with a lot more components then my non-rechargeable remote.

Old remote and packaging

New remote packaging

Charging Station

I checked my battery strength one week out from surgery (on June 14) and it was still at 100%. 

To check the battery strength, I use two devices:

One of the devices is a Samsung smart phone (on the right in the above picture) and the other device is a remote (on the left) that I hold up to my battery. 

After the phone communicates with the device, then it tells me what the battery strength is. I actually just checked it (so that I could take the pictures) and it's down to 75%, so I'll be recharging myself once I've posted this update. :) 75% is OK, but 100% is better! I carry both of these devices in my purse just in case I need them. It's kind of bulky, but oh well!

The first time I recharged myself was on June 16. I was working and my fingers started to twitch. That was odd (because my hands/fingers are rarely the problem), but it reminded me that I should probably check the battery. Like now, the battery had only drained 15%, so that it was at 75% but I want it to be 100% (because I'm neurotic like that!), so before I went out to celebrate my brother's birthday, I recharged myself. It wasn't as easy as I thought it would be, but I think it'll get easier each time I do it. 

To recharge, I drape this around my neck. The one side has a weight (it's blue), and the other side is the DBS system: 

Like I said, it wasn't as easy as I thought it would be the first time. It took a while for me to find the exact spot where the battery connects with the charger and once I found it, I was afraid of losing it. I actually did lose it several times, so I had to readjust and try again. Once I found it, I was nervous to stop holding the device as I thought it would slip again, but eventually things evened out and the recharge began. It took 45 minutes to recharge just 15%. BUT I think it will be faster next time because as I was recharging myself, I was also reading through the manual, and it said that the communicator battery should be charged to 100% and it was not. It was only at 84%. That was my fault because I had plugged the recharging station into an outlet that only works when the lights are on in the room, therefore it wasn't charging 24/7. In the picture below, "My Battery" is the battery that's implanted in me. The "Communicator Battery" is the battery that I'm holding up to my implanted battery in the pictures below. The "Handset Battery" is the battery that I carry in my purse (the one in the above picture).

The status of all the batteries :)

Me, afraid to take my hand off the battery charging device.

I finally took my hand off and it stayed in place!

The pictures below are of the incision. I don't think they're too gross (I just show the bandages), but if you don't like things like that, this is your warning to skip over them (I'm talking to you, Kristen!). 

Incision site on the day of surgery

Incision site as of today. That "lump" is the actual battery :)

Before I get into how today's post op appointment went, I have to tell you what happened on the way there. I left my house with 30 minutes until my appointment. My appointment was at 11:15am. When I left the house, it was pouring buckets of rain. It was raining so hard that it made me think we need to be very specific in our prayers to God. We need the rain, but maybe not all in one day. :) So, it was raining hard. There were no accidents on the highway, but traffic was horrific. I started to panic that I was going to be late. I prayed and said "Lord, the only way I'll be able to get there on time today is if you perform a miracle. Please perform a miracle and let me not be late!" I entered the parking garage at 11:10 (or around there). There was a handicap space available right away, but it was on the "wrong side" of the parking garage - meaning I would have to walk a lot further to get to the surgeon's office - so I took a chance and bypassed it. Then I got behind the slowest person in the parking garage -ha! I again saw a handicap parking spot but it looked like it was reserved for a different part of the building then I was going to, so I bypassed it. I was still behind the slowest person ever in the parking garage. He stopped in front of me, waiting for this person to pull out. When the person didn't pull out within a minute or two, the slowest guy in the parking garage went on and then I looked behind me and there was no one there, so I stopped for the same person. I couldn't tell if he had just gotten there or was leaving, but I waited a minute. He pulled out!! So, I pulled in. :) I got my walker out and looked at my phone. It was 11:14am. I went straight to the elevator and thought I'd be a couple of minutes late depending on how far I had to walk to the office. To my surprise, I got off the elevator and the office was right there in front of me (You might be wondering why I didn't know this before. That's because when my dad came with me for the pre-op appointment, we did park on the wrong side of the parking garage and went in different doors and elevators and had to walk a bit.)!  I checked in with the front desk and when I sat down in the waiting room, I looked at the time and it was 11:16am. I had checked in by 11:15am!! God performed a miracle! All I could do was smile and say, "thank you". God listens to us no matter how small or trivial our requests are - thank you, Jesus!

Today's post op appointment went well. I saw my neurosurgeon's nurse, Sarah. She looked at the incision and said it looked great. I commented that those steri-strips are strong, and she agreed but said when it's time for them to come off, they will fall off. There's 10 of them. I can't remember from my last surgery how long it took them all to fall off, but it'll be two weeks this coming Wednesday since my surgery and these strips don't look like they will be falling off anytime soon. I still can't exercise/move my hands above my head for an extended period of time (I mean, I physically can, but I'm not supposed to!)/ lift anything above 10lbs/ do any excessive movements/ swim or get the site emerged in water for 6 weeks, but other than that all is good. As I was walking out, (this neurosurgeon practice has literally the longest hallway I've ever seen for a doctor's office!) I ran into (not literally) my surgeon, Dr. G. He asked how I was and when I said "good" he said he thought I must be, because Sarah didn't run to get him. :) It was good to see him. When I said "good" as to how I was, I was specifically talking about the recovery from surgery. As for my walking, it's not where I want it to be. It does usually take about 2 weeks for me to see any major improvement and it technically has not been two weeks, but I think if I'm still where I'm at today in two days, I may bump the electricity up some as I'm still having lots of problems walking. It was nice to hear though from someone at church who said I looked a lot steadier on my feet then I did before the surgery. In that respect, I am much better. I do feel steadier on my feet when I'm standing still. Walking is a whole different issue! :) 

Another sweet friend reminded me that we just have to be who we are (disabilities and all), and we can't worry about what other people think of us. I've been told this over and over again and still need to hear it to believe it. I like to "hide" my disability as much as possible because I'm afraid people won't like me because of it. But, at times I have to use a walker. Other times I have to use a cane. Those things are hard to hide. I need to use what I need to use to get around safely and not be ashamed of that. I've grown A LOT since I was first diagnosed. Most of the time, I don't care what people may or may not think, but every once in a while, I get shy/embarrassed/worried what people think of me/how they view me. But then I remember that most people don't care - ha! They are worried about themselves far more then whether I can walk with a walker or not. :) God made us all unique and beautiful. Because we live in a sin-filled world we are also broken and battered. We have battle scars. But the brokenness and the battle scars make us stronger, wiser and in some respects even more beautiful than we can imagine. So, we carry on and we have compassion for those who, like us, are most likely broken and battered too, although maybe not in the same way we are.

Thank you for reading and always, always remember...."God's Got This!"

Tune-In-Tuesday (but on a Thursday): June 8, 2023 - Surgery Update

Yesterday I had my battery replacement surgery. It was set for 1pm and I had to be at the hospital at 11am. My dad came and picked me up around 10:15am. The parking garage at the hospital was so packed that we had to park on the very top level. I had done pre-op testing two weeks prior and had paid my out-of-pocket deductible the day before so all I had to do in registration was get my arm band and paperwork and head up to the out-patient surgery waiting room where Dad and I waited for an hour and half. :) It was fine. We ended up meeting this father and son. The father (and mother who was the one having surgery) are from Turkey. My dad overheard the father talking on the phone in a different language and asked what language it was. Dad had fun quizzing me on the pictures of celebrities he showed me. He couldn't believe I knew most of their names. Leave it to me to know the really important things in life - ha! Around noon, I began to think that the hospital had forgotten about me. It seemed like everyone else had been called back. Dad and I decided to wait until 12:30 before speaking up and around 12:20/12:25pm my name was called. Doesn't it always go like that?! We were led back to pre-op where I got dressed in a lovely hospital gown and socks. My surgeon's PA came in and went over what to expect with the surgery and after the surgery. After he left, a nurse, Renee, came in. She was super sweet, and we found out that we're the same age (well, she's a little older as her birthday was in March). In the computer system, my mom was still listed as my next of kin contact for surgery (although on the paperwork I had done two weeks prior, I changed it to Dad), which led to us explaining that she had passed away. Renee said, "Oh she was young, like early 70's?"  And that's when I found out we were the same age because she said that she thought my parents had to be around the same age as her parents. Mom was only 68. I think I've mentioned this before, but if not, I'm saying it now - LIDOCAINE, people. Lidocaine is the way to go before putting an IV in (especially if said IV is in your hand). Lidocaine is your best friend. A little shot of that to numb the area, makes for a very happy patient. I couldn't believe Renee had gotten my IV in when she said she had because I didn't feel it all. She said that she could tell I was super nervous getting the IV because I tensed up but after the Lidocaine, all was well. :) She said that it is now hospital protocol to give it before giving an IV. I like that protocol!! One protocol I don't like: urine samples for all women between the ages of 12-55 to make sure we're not pregnant. OK, it's not that I don't like the protocol, it's just that I wasn't prepared for it. During pre-testing two weeks ago, they asked if I'd like a pregnancy test before surgery. I said no, because there's no way I'm pregnant and I knew I wouldn't have had any fluids since the night before. Well, it turns out it's protocol to have it done. I had peed like 4 or 5 times before I left for the hospital that morning (just because I was nervous) but it took me forever to give them a sample at the hospital. (OK maybe not forever, but 2 different tries - maybe 10 minutes altogether). There was no way I was pregnant. Dad even offered to give it for me - haha! The anesthesiologist said he didn't care if I didn't take the test, but my surgeon insisted I have it. I did eventually pee and guess what the pregnancy test said?! I'm NOT pregnant. Glad we got that cleared up. :)  In between all of that I met with the anesthesiologist. Then the Medtronic rep came in and gave a demo on how my new battery would work. I got a rechargeable one this time and wow - there is a lot more to it then the non-rechargeable one, but I think I understood it all. Then a neuro-OR nurse came in and went over some things and then an anesthesia tech came in and got me ready to go back to the OR. I love that they can give you something to calm you down on the ride to the OR. My surgeon, Dr. G. told Dad that everything went great with the surgery. Today I was trying to remember, and I don't think I ever even saw Dr. G. yesterday. I could be wrong, but I don't think I did. :) After the surgery in post op, I ate some saltines and drank ginger ale while I listened to the patient on my right snoring loudly and the patient to my left crying out in pain - thankful that I was neither one of them. My nurse, Sonja, came back to my curtain area and apologized for the noise that the patient who was crying out in pain was making, but it didn't matter to me. I was still basically in anesthesia-induced bliss, and I had finally gotten to eat and drink something and had heated blankets. I was told that I was back in post op for an hour and half, but it seemed like only a few minutes. Then I was moved to step-down and Dad was allowed back with me. I could finally see as he had my glasses (and I'm legally blind without glasses or contacts). My nurse in step-down was Crystal. She is a travelling nurse (her home is in FL) and Dad and I had a good time talking with her. Finally, I was discharged. We left the hospital around 4:50pm. 

I spent the night at my dad's house. He was very sweet and attentive. To make me smile, he had gone ahead and wrapped all my birthday gifts (my birthday isn't until June 12) and set them up beside the bed that I would be sleeping in that night. As soon as I got to Dad's, I said I had to pee really bad. He was like, "Oh, now you have to pee! You couldn't have done that earlier?!?" :) We had hotdogs and chips and cherries for dinner and watched a documentary on Elizabeth Holmes and one on Hillsong, both watched on the MAX app that I have been working on in my professional life for the past 6 months or so. Funny story: as we were waiting in the waiting room before surgery, Dad finally found out exactly what I do at work - haha! He said that when I explained it to him before he didn't know what a "thumbnail" was, but when I showed him on the MAX app, the images I had created, he understood!

So far, I've been able to manage the pain with over-the-counter pain meds. In fact, what hurts the most is not the incision site (although there is pain there), but rather my tongue. I noticed that pain right after I woke up from anesthesia. I learned from a friend that sometimes the anesthesiologist will put a clamp on your tongue to get it out of the way (or something like that...I don't think this was ever in an episode of ER, so I'm not sure it's true - haha!). Anyway, I have a really bad sore on my tongue now and it's causing my worst discomfort. But that 3rd day after surgery is usually the worst for pain (at least for me), so here's to hoping that I can make it through the workday tomorrow! (I'll be fine!)

I have to give my dad huge props for helping me through this surgery. That was (mainly) always a Mom thing, but Dad did wonderfully. It's the first surgery that I've had since Mom's been gone. It wasn't a major surgery (from a surgeon's standpoint), but it was big to me, and Dad did a great job seeing me through it. Thank you, Dad! 

As always, I'll close by saying, God's Got This! 

Tune-in-Tuesday: May 9, 2023

Wonders never cease - I am actually writing this blog post on a Tuesday (to go along with the Tune-In-Tuesday theme) AND I'm updating this blog within a month of my last update (instead of not updating it for 3 or more months). Actually, this is the 2nd time I'm writing this post tonight because somehow, I lost my previous post. I had just finished it too, so I'm not happy about having to write this all over again, but here it goes...

I'm updating tonight because I met with my neurosurgeon today. It took a while to get in to see him. Usually, the neurosurgeon's office is very responsive, so I found it very odd that I had not heard from them a week after seeing my neurologist. I called my neurologist back (since he said to do so if I hadn't heard from them). His assistant gave me the name of the neurosurgeon and his number so that I could call them directly. I couldn't think of the name of my neurosurgeon off the top of my head (see what I did there?!) when I was talking with my neurologist's assistant, but the name she gave me, was not his name. I did a little research before I called the neurosurgeon's office and remembered the name of my neurosurgeon! When I looked him up, I found out that this new (to me) neurosurgeon is in his same practice. It turns out that my previous neurosurgeon, Dr. B. has handed off these battery replacement surgeries to his colleague, Dr. G. (my new neurosurgeon). When I called the neurosurgeon's office the front desk was as confused at first as I was - ha! In their system my surgeon was Dr. B. and even though I said I was to see Dr. G. now (according to my neurologist) they had me leave a message with Dr. B.'s team first. Dr. B.'s team called me back and explained that I was supposed to be with Dr. G. because Dr. B. had handed those surgeries off to him and they said that they had left a message with Dr. G.'s team to give me a call back. When I hadn't heard from Dr. G's team 3 or 4 days later, I called back and left a message. I have a dear friend at church who knows people in high places at the neurosurgeon's office, so she texted her friend and her friend had Dr. G.'s nurse call me the very next day. It turns out my paperwork had gotten lost. Dr. G.'s nurse was super apologetic and friendly and she scheduled me for the very first appointment available - today. She actually scheduled me with Dr. G.'s PA because Dr. G. didn't have any appointments available until the end of June, but she assured me I would get to meet Dr. G. for a minute or two at today's appointment.

In the meantime, I asked my brother, who is an ER doctor at the same hospital, if he had heard of Dr. G. He had and said that he loved working with him because he was very responsive. 

My dad went with me to today's appointment. He didn't have to, but I'm glad he did because we both got to meet Dr. G. for the first time at the same time. Plus, Dad settled my nerves (although I don't think he knows that). Like I said, we met with Dr. G.'s PA first. He was great. Then Dr. G. came in. He didn't seem rushed at all, and he answered all of our questions. He was super nice and put my nerves to rest. I finally got an answer as to why my battery drains so fast. He said that's it's actually super common that dystonia DBS patient's batteries drain faster because we use more electricity and on a higher setting of electricity then other DBS patients (like Parkinson's patients). He agreed with my neurologist that me having to have the battery replaced in my system every 1.5 to 2 years isn't good because with every surgery there's risk of infection. I asked (because a friend brought this up) if scar tissue was/is an issue with each new surgery and surprisingly (to me), he said that wasn't an issue because there is something they can do to avoid that. He said that I was an ideal candidate for a rechargeable battery. Dad asked how long a rechargeable battery lasts. He said 15 YEARS. Yes, 15 years! But, while it may last that long, I have to recharge the battery EVERY WEEK. It takes 2-3 hours to recharge it, but I don't have to do it consecutively or even on the same day. I do have to be plugged in to a light socket though. I had joked with friends about that, but that part of it turned out to be true. It's a good thing I like to watch TV because I guess that's what I'll be doing while I recharge myself. :) Dr. G. went over the risks of a rechargeable battery. There's a slight risk that the battery could come dislodged/torn from the muscle (I think it's muscle they sew it to. Dr. G. said what it was, but I've forgotten that now!) or it could flip, and I would have to have surgery to get it sewn back in place or flipped back over. He said I'm at a low risk for either of those things happening. Those at a greater risk are older people who have thin, frail skin. He's only seen it happen once himself and it was in a patient who was in their 80's. One of the advantages of having a NON-rechargeable battery (what I have now) is that even if the battery were to flip or become dislodged, it would still work. The rechargeable battery has a certain spot (and only on one side) where it's recharged and that's why it would have to be replaced and/or flipped surgically if it became dislodged or if it flipped. Does that make sense? I feel like I'm not making sense, but Dr. G. made perfect sense when he described everything. Dr. G. showed us what the battery looks like and it's smaller then the one I have now. Dad and I agreed that the rechargeable battery is the way to go. It's made by the same manufacturer (Medtronic) as my non-rechargeable battery and everything else would remain the same (as in, I will still have a remote to change the settings). After Dr. G. had explained everything to us and answered all of our questions he left and sent his nurse in to schedule the surgery with us. She asked if there were any days in June off the table for us since that would be the first dates she could get me in. We told her I didn't want it on my birthday. She asked when that is and when I said the 12th she said she could get me in before then - whew! The earliest Dr. G. has available is June 7 so that's what we decided on (even though that's my niece's 2nd birthday - that kind of bummed me out - but my sister-in-law said we could celebrate early which made me happy!). I have pre-op appointments scheduled for May 24.

So now I'm praying that the battery won't completely die before June 7. If I'm being honest, I get really anxious about having surgeries (and yet at the same time am super thankful for them!), but I know that in everything...

God's Got This!

Tune-In-Tuesday (but on a Wednesday): April 12, 2023

If it weren't for every-three-months Botox injections, this blog may not be getting much love these days! Sorry it's been three months since I last updated, but there really hasn't been much to update on. 

I saw my neurologist, Dr. T. today for a Botox injection and ended up leaving with homework to do. :) I wasn't expecting anything that happened today with this appointment, including Dr. T. coming to get me out of the waiting room (and not his nurse). He watched me walk and I got nervous. I told him not to watch and he laughed and said he was sorry but that was his job. I told him walking has been difficult these past few weeks. In the past week or so, my leg has been spasming at night. I'm thankful I don't have restless leg syndrome, but I imagine what I've been experiencing is kind of like that. My leg just jerks (mainly at night when I'm lying in bed, thankfully, but as my dad can attest, it's happened when I am walking too). Dr. T. said that is probably the Botox wearing off. We discussed options. Dr. T. tested my muscle strength and (I think!) he was surprised. He said I had great strength to which I replied that I knew that it's just my brain (getting the signal to my leg and foot) that's the problem. I later logged on to my patient portal to find out exactly how many units of Botox he injected and noticed that he put my muscle strength at 5 out of 5. I told him that I often walk "stiff legged" (not bending my left knee) because I feel like if I bend my knee, I'll lose control of my leg or that it will spasm. This gave him an idea. He said he could inject the Botox into my hamstring. I was all for it. I usually am. I really will try anything (I mean I did have deep brain stimulation surgery after all!).

So, we decided to stay at the same amount of Botox units given into my tibialis (admittedly, I had no clue what the muscle he was injecting the Botox into was, I found the name on his notes and then Googled it -ha!) which is 40 units and then he injected 30 units of Botox into my medial and lateral left hamstring (2 injections of 30 units each). He didn't waste any Botox - haha! It comes in 100 units, and he used all of it. The injections into my tibialis hurt. I'm not going to lie. I feel like it hurt even worse than last time, but I could just not be remembering correctly. I could feel the Botox going in. I really wanted to jerk my leg out from under his grip, but I didn't. It really, really hurt. I didn't even notice until after I left the office, but Dr. T. gave me a Scooby Doo band-aid. This made me smile because one of my nieces LOVES Scooby Doo. So this is where the tibialis muscle is:

Then Dr. T. had me lie on my stomach while he injected it into my hamstring, and he made the comment that those injections didn't seem to bother me at all, and they didn't. It didn't hurt at all. Why the difference, I don't know.

Dr. T. mentioned physical therapy again. I point blank asked him if he wanted to me to do it and he point blank answered me "Yes". So, I'll do it, for him. :) I don't necessarily see the point if my muscles are strong, it's just my brain that isn't getting the signal to them to work, but I trust Dr. T. and he is the doctor (and I am not) - so I'll do it. This is nothing against physical therapists or physical therapy. At the very least, I'll build muscle, right?! 

Dr. T. checked my deep brain stimulator and surprise, surprise - it's due for a new battery. I've had the DBS system for 7 years now and this will be the 4th battery. The battery is supposed to last 3-5 years (and in some cases up to 10 years!). So, this time he put the order in for a rechargeable battery to be implanted. I don't know why I seem to drain batteries faster than the average person, but I do, and he commented that I've had my fair share of surgeries to get them replaced (I have to go under general anesthesia every time), so he wants me to try a rechargeable battery this time. I'm not thrilled about that idea because that means I'll have to recharge it every week (basically, be hooked up to a wall socket until it charges), but it WILL be worth it if it makes the battery last more than 1.5-2 years which seems to be what it lasts for me. The last time I had battery replacement surgery was January 2021 (This time it did last a little longer!).

When my DBS remote says this, it's time for a battery change.

As I said at the beginning of this post, he gave me "homework" to do:

 1) I have to call him in a month to let him know if the Botox in my hamstring is working (or if it made things worse).

2) I have to set up/go to physical therapy.

3) I need to have the battery replaced in my DBS system.

I did ask him whether he thought the DBS was working. I felt like if he didn't think it was helping me anymore why should I have the surgery to replace the battery. But he assured me that he does think it's working and helping me. The Botox and the physical therapy are in addition. I also take medication. I do have a renewed optimism and hope that I will walk cane and walker free again one day soon. My next Botox injection has been set for July 12.

As always...God's Got This!

Tune-in-Tuesday (but on a Thursday): January 19, 2023

Oh, I so hoped that I wouldn’t just wait until my next Botox appointment to update this blog, but that’s exactly what has happened and I’m so sorry! Life got exceedingly busy and this blog was neglected. But, I’m showing it some love now, so all is good. 

My last Botox injection of 45 units was done on September 28, 2022. By October 22, I could tell I’d been given too much. I’d fallen a few times and I had no control over my foot. It was “floppy” and weak. Dr. T. had warned me that this could happen if I had too much Botox. He also warned me that there was really nothing that could be done, and I’d just have to wait for it to wear off. Ugh! I hate waiting. 😉 I decided that I would try to counteract the effects of the Botox by upping the electricity in my deep brain stimulator, so, I went from 3.50 volts to 3.70 volts. But I’m not a doctor as you well know and that didn’t help at all, so I ended up going back down to 3.50 volts. 

Life got warp speed fast in November when my temp position at work became my permanent position (praise Jesus!!) and my mom’s health started to rapidly decline. Soon, I wasn’t thinking about my walking at all and just managed the best I could. I used my walker more and didn’t care that I had to use it.

Because I became a “new” (that’s in quotes because I’ve actually worked for the company for 15 years. I was laid off in December 2020, spent 8 months on “vacation” and came back to the company in a different role in August 2021. I was a temp from then until November 2022.) employee in November, I was added to their insurance then, but EVERYONE in the company would be switching to a brand-new insurance come January 2023. I called Dr. T’s office in the middle of December to explain the insurance situation. They tried calling what would be my new insurance company come January 2023 to get pre-approval, but since the new insurance company didn’t know who I was yet, they didn’t succeed in that. We (Dr. T’s office and myself) decided to keep my January 4 appointment and pray that Dr. T’s office would be able to get pre-approval in a day so that I could get the injection, but just in case that didn’t happen, we scheduled another appointment for January 25. 

On December 21,2022 I “moved in” with my Mom and Dad to help with my Mom and on December 30, 2022, my mom passed away. It was shocking. We knew she had metastatic cancer, but it was still a shock that she died when she did. We thought we had a few more months if not years. 

On January 3, I was expecting a call from Dr. T’s office to see if I still had an appointment with him the next day. Around 4pm I finally called them and asked. They had not gotten insurance approval yet, so my January 4 appointment was cancelled. I was happy with that as I was still in shock over my mom’s death, and we were busy making the funeral arrangements and I just didn’t feel like going to a doctor’s appointment.

Last week I got a call from Erica at Dr. T’s office saying that she was still trying to get the Botox approved. Fast forward to January 17 and she called me to say that insurance FINALLY approved it - yay!!!  On a side note, that very night, I got a letter in the mail from the insurance company saying they had declined my request. It was dated around the time that the first request was declined.

Since I was technically already really behind in getting the injection, Erica asked if I would like to come in the next day and I, of course, said yes.

Word to the wise: don’t schedule a Botox injection at the beginning of the year or you will pay your full deductible right off the bat! 😂😂 But now I have all year of “free” doctor’s appointments! 

When I saw Dr. T. he asked how the Botox had worked. I told him I thought 45 units was too much and explained to him what happened. He asked if I had fallen and how many times. I told him I had fallen but couldn't remember the exact number of times I had done so. It was more than once though that's for sure. I told him about raising the electricity in my DBS system but then taking it back down. He was OK with that. He said it was strictly the Botox’s fault for making my foot floppy and loose. Then he asked what I wanted to do. I could decline the Botox injection altogether; or he could give me a lower dose. I opted for the lower dose. Since 40 units seemed to work really well before (I had said that my walking was 70% better), we landed on that. So, that’s what I got: 40 units. 

I asked Dr. T. how his holidays were, and he asked me the same, so I told him about Mom. He said he had lost his father-in-law and an uncle about two years ago in succession around the holidays, so he knew how hard it was to go through something like that. Then to distract me from the needle, we talked about concerts and football. I’m hopeful that this injection will work, but I’m also realistic and know my walking won’t be perfect. 

As I write this, it’s dawned on me that my mom has been with me every step (literally!) of the way through this dystonia journey and now she’s not. Of course, my dad and brothers have been there too, but Mom was the one to go to every doctor’s appointment with me (if they were out of town/state) and she’s the one that’s been with me in the hospital for each surgery. It’ll be different going forward. But for now, I’ll close this update as I always do because it’s the one thing that never changes: 

Always remember...God’s Got This!!