Tune-In-Tuesday (but on a Wednesday): September 28, 2022

Hi all! Sorry, I've been MIA on here. There were several times I thought about updating, but then talked myself out of it - ha! 

I met with my neurologist today and thought I better update the blog before I forget to. :) Do you ever make more than one doctor's appointment on the same day and then regret it?! I don't know what I was thinking but I had a neurology appointment and a physical today, plus work. 

To begin - I got a flat tire on my way home from work last night (Tuesday). In retrospect, it was God's grace. I was on my way home from work and literally within feet of my house when I noticed something was awry. I pulled into my driveway and sure enough - a flat tire. I don't have Triple A but do have roadside assistance through my insurance company, so I contacted them through an app on my phone. They gave me an ETA of someone coming to help but it turns out that the ETA was just that - an ETA. :) About 2 hours later, someone did finally come to help. I didn't necessarily mind since I was technically at home - haha! The guy pulled out my spare tire and it was flat. Sheesh. He had an air compressor though and waited awhile to see if the air would hold in my tire, and thank you, Jesus - it did! Whew! So, he installed my spare. I asked if the spare would at least get me through the next day (today) because I would be too busy to get a new tire that day. He assured me it would. This was NOT how I envisioned my night going, but I did see God's grace written all over it. I could have been on the highway or on my way to work when it happened, but I wasn't. I could have missed work or appointments, but I didn't. See? God's grace. Now, I'll really, really, really listen to my dad and brothers when they tell me (at least a couple of months ago) that I need a new tire! 

This morning when I went to my car, the spare tire still had air in it - yay! I saw Dr. T. (my neurologist) at 10am this morning. One of the first things he said was that he saw I had had COVID. Ugh, yes! Yuck. I'm so glad to be over that. I asked if he had gotten it and he said that so far, he's been blessed to not have had it. He asked me if the Botox worked this time, I said it had. Yes, this time I COULD tell that the Botox helped. Oh, it's not perfect by any means, but there were days when my gait was so much better. Yes, I still use the walker in parking lots or wide-open spaces. Yes, I still use the cane, but I could tell, when the Botox was at its peak, it was helping. But I always want more. I always want it to be better. I guess that's just my innate personality. You give me an inch; I want a mile. He asked me to put in percentage how much it helped. I said 70%. Maybe that was too much? Maybe it was too little? I don't know, but that's what I told him. I said that while it helped, I think I could go higher on the units given. He agreed. He also said though that he didn't want to give me too much because he didn't want to make my leg too weak. He said he would try between 45-50 units. 

Sidebar here. I was talking last week with my sister-in-law who is a pharmacist. She asked how many units the doctor was giving me at a time. She said that when they give it to patients for bladder or esophageal problems the dosage is usually 100 units. Initially (because I wasn't right in front of my blog when we were talking - haha!) I told her that I thought he had started off with 20 units. That was wrong! He actually started with 30 units. Then in June, he upped it to 40 units. 

Back to today. Before he gave me anymore Botox, he checked my deep brain stimulation unit, and everything checked out with it. The battery is still good - yay! Last time I got Botox he asked that I not mess with the settings on my DBS unit so that we (he) could tell what was doing what. So, I didn't mess with it. About two weeks ago I really started having problems. Where once I could just walk with the cane, now I was finding myself having to use the walker. I started falling more and just generally being unstable. I noticed that I was walking on the "outside" of my foot and that my foot wouldn't land securely on the ground. Also, my foot would spasm and jerk (mainly at night). I could tell the Botox was wearing off. I didn't want to mess with the DBS settings though because I knew I would be seeing Dr. T. soon enough. 

As Dr. T. prepared the dosage today, we chit-chatted, which I think he knows distracts me enough to relax me enough - ha! We talked about the UT/Florida game. :) He injected the Botox and when he was done, he asked if I was OK. He said, "You barely flinched this time!" Yay, me! It did hurt a little, but not as bad as last time. He asked if I wanted a Band-Aid, and I said yes. I'm kind of glad I did because this time it bled a lot more. He made me feel so much better about myself when he couldn't get the Band-Aid opened without issue. Ah, yes, it happens to the best of us. ;) When I asked him how many units he gave me, he said 45. I said, "You really are conservative, aren't you?!" (I'm just not that patient. I'm either full throttle or nothing at all.) I asked him if there are other muscles he could inject (to help me even more). He said there are, but the muscle he injected it into is the muscle that controls whether my foot turns in or not and that's where he is seeing most of my problem. He asked again that I try not to mess with the DBS settings, unless I absolutely felt like I needed to if the Botox was wearing off. I asked, "So I can't play with it at all?" And he said, "Unless you need something to do, no, try not to." Which actually made me laugh. "Unless I need something to do?" He said, "You know what I mean. If you really, really think it'll help you can do it, but try not to." :) So, I'll try not to mess with the DBS. Maybe 45 units of Botox will do the trick. As I left the room, I said, "And this is when you are going to try to "secretly" watch me walk, aren't you?" (He was going one way; I was following the medical assistant out to the lobby another way, so he would be behind me.) To which he responded, "Yes, but I'll try not to make you nervous." :)  So, here's to 45 units of Botox! My next appointment is January 4 of NEXT YEAR (and yes, I do realize we are days away from the start of October - ha - so it's not that far away!).

My next doctor's appointment of the day was a physical. Everything went great there except my sodium levels are STILL low. (Not that I expect you to remember, but last year my sodium was low.) The doctor said that I seem to be tolerating it fine so he's not all that worried about it. It can get TOO low, but it's not, for now, so that's good. I just need to eat more salt (within reason!), which isn't such a bad thing! :)

If you've read this far, thank you! I think I've written enough to last you for the next three months.

Always remember...God's Got This!

Tune-In-Tuesday (but on a Saturday): July 16, 2022

When I logged in to write this blog entry, I realized I had not updated since April 19 - almost three months! I really did not mean to go that long without an update, but you know - LIFE!! :) 

There's been quite a bit of life happening lately - most of it good, a little not so good. My brothers and I have all had and celebrated our birthdays for the year. My youngest niece turned one. My parents and all 3 of my brothers have celebrated their anniversaries. My parents took a trip to Sicily and Malta.  Mom and I took an overnight trip to Alabama to see a performance of Simply the Best: The Tina Turner Story and visit close family friends. I got to see the new Elvis movie courtesy of work. There have been lots and lots of celebrations and fun times!!

On June 29th I saw my neurologist to get another shot of Botox. I wasn't sure if I was going to be able to get it as insurance didn't approve it until June 27 - two days before!! Talk about the ninth hour!

 Dr. T. asked if I had fallen any. Had I fallen any?! Umm...YES! Three times. But then again, I had walked with just the cane and/or by myself and "forgotten" either my cane or my walker three times too - so maybe it all evened out?! (What I mean by "forgotten" my walker is that I use it to get in to church, but then only use my cane while in church. On a couple of occasions, I started walking out to my car using the cane and then remembered I had brought my walker in too, so I had to go back in and get it! I use my cane walking around work and when in meetings I place it under the table or my chair and then I get up and proceed to walk to the door, forgetting my cane.) I was prepared to tell Dr. T. that the Botox didn't work and made things worse, however, I only ended up telling him that first part. To be honest, I don't really know if it made things worse - so that's what I told him. It's a very tricky thing talking to the doctor. I obviously want to be as honest with him as possible. I was having a rough time walking, but did the Botox make my walking worse? I wasn't sure. I'm still not sure. It's not black and white (as I wish it were). I'm still walking with the cane, but there are times I can walk on my own (no cane or walker). I still use the walker to walk into work/church/anywhere with big parking lots/anywhere far, but I probably should have been doing that before if I'm being honest. So, I ended up getting more Botox - ha! He upped the dose. I got 30 units back in April and this time he gave me 40 units. As he was preparing the injection (with his back turned to me), I had propped my cane against the wall and it fell, crashing to the ground and making a horribly loud noise. He quickly turned around as I quickly remarked, "I'm OK! It was just my cane!" I told him, I'd just leave the cane on the floor, but he came over and picked it up and propped it back up against the wall for me.

I've decided that I'm a wimp when it comes to needles. Oh yes, I may love watching medical shows on TV. I may have had deep brain stimulation surgery. I may have had multiple procedures and things involving needles, but it doesn't mean I've liked them. I've already known for quite some time that I have issues giving blood/getting labs drawn at the doctor's office. It's become kind of a joke actually. I don't mind seeing other people get needles poked in them, but when it comes to having it done to myself - I'm a wimp. :) I can't watch the needle going in. I can view it afterwards, but not going in. I commented on the Botox needle that Dr. T. was just about to inject into me, "That's a big needle!" Dr. T. said, "it's not that big!" and told me not to look at it, which I didn't. He distracted me by having me talk about summer vacation. It turns out that he and his family vacation where my family and I used to vacation when I was a kid! I told him all about the vacation we were about to go on the next week. He remembered that I could walk normally on sand. :)

This time, the Botox injection hurt a little. Dr. T. said he might have aggravated a nerve that sits next to the muscle, but he injected it in the same spot as last time. He did say that I could cancel these Botox injections at any time if I didn't think they were helping. The point of the Botox is to get my foot to stop turning in, thereby getting me to walk better. Dr. T. could tell at the beginning of the appointment that my foot was still turning in. So, for now, I'm going with the Botox. But we'll see. He also told me - if I could help it - not to do any adjusting to my deep brain stimulator for at least a month so that we could differentiate between the Botox helping/not helping and the DBS helping/not helping. I do kind of want to "play" with the DBS settings again, but I'll wait a full month. It's coming up soon! By the time I went to bed that night my throat had started to feel scratchy. I thought it was allergies or because I hadn't been drinking enough fluids.

I woke up the next day, on June 30, at 3am with horrible muscle cramps in both of my legs. Both legs ached terribly. I also had a horrible headache, and my throat was still scratchy. I wondered if these were a side effect of the Botox. So, at 3am I did what every normal person does and went to Dr. Google to explain my symptoms. :) Google said Botox could give me muscle cramps but not likely. I worked from home that day and had only been at my computer for half an hour or so before I couldn't stand it anymore. My headache felt like my head was splitting open (it reminded a little of what I felt like after DBS surgery) and my legs still ached. I had to go lie down. I took my computer with me and placed it beside me on the bed so that I could hear if any emails came in. I decided to take an Ibuprofen. I took one pill - 200mg. That did the trick! Within just a few minutes of taking it, my headache and achy muscles were gone!! I was able to sit up and work for the day. 

By Friday morning, July 1 all of my muscle cramps and headache were in the rearview mirror, however my throat was killing me. It felt like razor blades. I thought I had strep throat. I was going to call my doctor to see if I could get in to see him that day as the next day was my niece's 8th birthday and we were having a big party for her and on Sunday we were leaving for the beach. But before calling the doctor I knew his office would ask if I had tested for COVID. So, at 7:30am I made a trip to Walgreens to pick up a COVID test. I wore a mask (as I had been. I still haven't gone into a store without wearing one.) and picked up a test. I came home knowing that it was going to be negative. I took it and it did nothing. Absolutely nothing changed. I read in the instructions that if the test did nothing that meant you did the test wrong. So, thankfully I had another test. I took that one being very careful to follow each step as was explained in the directions and this time it was as clear as day - I was positive. I wanted to take another test to make absolutely sure I was, but I didn't have any more. How could I have COVID? I was utterly shocked. I texted my parents and my doctor brother. They all confirmed that it sounded like I had COVID and probably did not need to retest. I called my doctor's office and told the lady at the front desk what was going on, but by this time I was starting to lose my voice. She got what I was saying though and said she would pass my message along to my doctor's PA and the PA would call me back if she had any questions. Then, my dad called me. I told him my voice was perfectly fine earlier in the morning, but by then it was almost completely gone. The PA called me back within an hour. By this time my voice was completely gone, so it was rather comical to speak with her. She called in an antiviral prescription for me (Paxlovid) and told me to self-isolate for 5 days (from the time I started feeling sick, which was Wednesday night) and then wear a mask for 10 days. She also said to drink lots of fluids and monitor whether it was getting hard to breath. She said if it was, to go to the ER. Then she stopped herself and started laughing and said, "What am I saying, your brother's an ER doctor, you probably already know about all this!" After speaking with the PA, my doctor brother called. He reminded me again to drink lots of fluids. My throat was on fire. I couldn't even swallow. It hurt to drink fluids or eat. I finished out the workday (I worked from home again) and then picked up my prescription (using the drive-thru). I took it when I got home and by then, I was exhausted, so I took a nap and basically didn't get up until July 8. OK, that's a little bit of an exaggeration, but not much. I didn't get to go to my niece's 8th birthday party. I didn't get to go to the beach. My bed and I were best friends for the week. I used to brush off people when they said that COVID fatigue took them out - now I do not! Oh my gosh. The fatigue was horrible!!!! I slept the week away. I also got a very strange taste in my mouth. I thought it was from the antiviral, but my brother said it was from COVID itself. I'm so thankful I didn't lose my taste or smell (I have an unlit scented candle on my nightstand and when I would start freaking out that maybe I lost my sense of smell, I would pick it up and smell it!). I also felt like I was feverish and would sweat through my clothes. But the odd thing was, I never, ever had a fever. I checked every time I felt like that, and my temperature was normal! Between my throat being on fire, the bad taste in my mouth and sleeping most of the day and night away, I barely drank or ate anything. I can admit this now since it's all behind me - ha! I really did try to drink fluids, but it hurt so bad! At some point, I thought about calling my brother and just asking for an IV, but I didn't. On Tuesday night, July 5, I was feeling better. My sore throat was gone. I got my free government issued COVID tests in the mail (I had not signed up for them yet, so on Friday when I knew I had COVID, I signed up and they were there by Tuesday) and decided to test again. I was sure I was negative. Nope - I was POSITIVE - still!!! But I was feeling better. How could I still be positive?! Well, the feeling better only lasted that night. By Wednesday, I was back to feeling horrible with the feverish/sweaty spells and the fatigue. BUT my throat wasn't hurting anymore, and I was getting my appetite back. Sweet church friends brought me dinner and some groceries and left them on my front porch. I decided to get a shower at some point and that wiped me out completely. Thursday was horrible too but then something happened. I woke up on Friday, July 8 and there was no bad taste in my mouth. But I was still so very tired. I decided to test myself again that afternoon and for the first time in a week, I WASN'T COVID POSITIVE!!! Hallelujah - glory be!! I wasn't sure I was reading it right. This time I was convinced I probably still had it. But I didn't!!!!! Some other sweet friends were going to bring me dinner that night, but I texted them and said that I was negative, so they didn't have to if they didn't want to. But they still did and I'm so glad they did! I had huge plans of going to the grocery store or just getting out that day - but that didn't happen. I slept that day away too!! Saturday, I was still feeling fatigued, but I made it to the grocery store (masked-up of course!). I was there maybe an hour and it wiped me out. I came home and slept the rest of the day. On Sunday, July 9, I tested myself again, just to make sure I was still COVID negative and glory-be, I was!!! I went to church (and wore a mask) and then to my parent's house afterwards for lunch. By Sunday afternoon, I was feeling the fatigue again, but I did not take a nap! I just laid there, motionless, on my bed. :) I told my parents the real test would be getting through 8 hours of work the next day! But by Monday, I was completely "normal" again. The fatigue was gone!!!! I made it through 8 hours of work and then some and felt amazing. I was and am so very, very thankful that I don't have COVID anymore, and the fatigue is gone, the bad taste in my mouth is gone, the feeling feverish and sweating through my clothes is gone!! Praise Jesus. I am however devasted that I didn't get to go to the beach. I had been looking forward to it all year. It's the one place I can walk with no issues (on the sand) and it's just my happy place. I am thankful though that I tested before being around any of my family members and did not spread it to any of them (or any of my co-workers or friends that I know of). Thank you, Jesus!

So yes, it's been an eventful few months since I last updated. Mostly good, some bad, but God has been in it all. My next Botox injection is at the end of September (if I decide to keep going with it). Maybe, I'll update before then!! ;)

If you've made it to the end of this post, pat yourself on the back! It was a long one, but now you're up to date! 

Always remember - God's Got This! 

Tune-In-Tuesday: April 19, 2022

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

I thought I'd jump on here and give a (hopefully) quick update. Tomorrow, it will be two weeks since I got Botox. It's been an eventful two weeks. One of my nieces turned 6 and had an epic birthday party including blowing sleet and snow - ha! I've driven the tractor train at my church's Easter Fest and I celebrated Easter at church and with my family. Oh, and I also fell three times and might have sprained my hand. :) 

The good news about the falls is that I don't think they had anything to do with the Botox working/not working. Two of the falls came 3 days after getting the Botox and one fall came a week after I got it. Two falls happened within an hour or so of each other. One was caused by me accidentally stepping backwards and catching my foot on a sign. I lost my balance and basically just sat down on my butt. The second fall happened because I was rushing, the wind was blowing hard and blowing sleet and snow in my face and I wasn't paying attention. That was the fall that I might have sprained my hand on. This is when having a brother who's an ER doctor comes in handy! My hand was killing me, but I could move it, so I knew it probably wasn't broken, but he checked it out and made sure. It hurt for a couple of days, but then was fine. The third fall I took was in the grocery store parking lot and it was caused by being completely startled by barking dogs in a neighboring car. I was holding on to a cart at the time and just went down on my knees, which wouldn't have been a problem had I not just bloodied those knees (actually, just one knee, my left) four days earlier. I can tell that I'm a professional Band-Aid applier though because I literally grabbed one out of my purse, wiped the blood from my knee and applied it to my knee all while walking into the store. The reason I don't think any of these falls were caused by the Botox is because my neurologist said not to expect to see anything for the first week or so. Plus, I probably would have fallen - Botox or not - anyway in those circumstances. So, I'm no worse for the wear. 

As for the Botox, I can't tell if it's working for or against me just yet. Some days I think I can tell it's negatively affecting me and other days I think it's helping and still other days I remind myself it hasn't been at least 2 weeks yet. I'm not really sure what to expect or what to feel/not feel if it's working. So, I'm just (still) waiting. 

As of, April 4, I have returned to in-person work. My company has us working three days in the office and two at home now. Returning to in-person has been nothing short of AMAZING!!!! I knew I missed it, what I didn't know was how much I missed it until I went back. In-person work has meant that I've had to do more walking. I've been using the walker to get in and out of the building and for long distance walking but using the cane while walking short distances in the building. Of course, my second day back, the fire alarms went off. I sit on the second floor. Although I knew it was probably a false alarm, I made my way precariously down the stairs. A co-worker was kind enough to walk slowly with me. I was half walking slowly because I didn't want to have to walk all the way outside just to return back to the building if it truly was a false alarm, but the other half of me was walking slow and precariously because that's literally all I could do. Halfway down the steps, we got the word that it was indeed a false alarm, and we could return to our desks. Today, when I walked in the building there was an "out of order" sign on the elevator. Now, there is another elevator in the building, but it's towards the back of the building and I was in the front of the building. I could have (probably should have) gone and used that elevator, but I did not. There's not that many steps up to the second story of the building, so I decided to fold my walker up and just walk them and I made it. I stopped once to let two people by but didn't ask for their help because I only had a few more steps to go. By the time I left work, the elevator was fixed - yay!

The more I walk, the better I'll get at it. I have to get those neuropathways dug again! I just have to get over the fear of falling. I am convinced though that I'll be able to sideline the cane again someday. :) I may not necessarily sideline the walker though. I wasn't 100% when I didn't use either the cane or the walker - I was just stubborn. Now, I think I may continue using the walker when I'm in parking lots or when I have to walk long distances purely for safety's sake. If I don't need it when I reach my destination then I'll sideline it, but at least I won't get "stuck" somewhere and not be able to walk without falling. 

OK, so this didn't turn out to be a quick update after all, but you probably already knew that it wasn't going to be. I'll update again when there's something to update about. Until then, always remember...God's Got This!

Tune-In-Tuesday (But on a Wednesday): April 6, 2022

I can't seem to ever update this blog anymore on an actual Tuesday, but the titles are going to remain Tune-In-Tuesdays because I don't have the brain power to think of another name for them. ;) 

This morning, I was listening to the news while getting ready and I heard Tiger Woods say something to the effect of "Golfing's not the hard part. Walking is the hard part." And I thought to myself truer words have never been spoken! Finally, someone else thinks walking is the hard part too - ha!

Today, I got Botox. No, not in my face (where I could actually use it!), but in my leg. Now in a few weeks all the wrinkles with fall off my leg. ;) It's actually to help "paralyze" the muscle that's causing my foot to turn in. It's temporary as it only lasts about 3 months. I have tried Botox before - 17 and 11 years ago respectively - and it didn't work, but hopefully, there have been advancements in it since then and I'm cautiously optimistic that it will work this time. I also have faith in my neurologist. If he said it's worth another shot (haha, I didn't mean for that to be a pun, but it is), then I'll give it another shot. :) Seventeen years ago, I developed an antibody to one strain of Botox (discovered through a blood test). But again, it's been a long while, so maybe this time it will work. 

I know my leg is whiter than the Band-Aid - ignore that! This is where the Botox was injected.

I realized something tonight as I watched Chicago Med on TV. I realized that my neurologist is hopelessly optimistic, whether he realizes it or not and that wears off on me every so often (which I am very thankful for). I'm not an innately optimistic person. I wish I were, but my underlying tendency is to be pessimistic, no matter what I display on the outside. I need to constantly surround myself with optimistic people, so that their cheery disposition rubs off on me! Anyway, I was watching Chicago Med tonight and one of the doctors on there (Dr. Halstead for any that watch) just struck me as hopelessly optimistic about his patient and then it struck me that my neurologist is the same way. My neurologist is always thinking about what we can do next to improve my walking and it gives me hope.

I'm not usually one to be deterred by needles, but for whatever reason today when my neurologist pulled out the needle with Botox, I must have given him some kind of look of nervousness because he immediately said, "OK, let's just talk. Did you follow any of the basketball championship?" I did not in fact follow any of the basketball championship games or March Madness, but it didn't matter. It was just the distraction I needed. I did know who won the championship (yay me!). We ended up talking teams more than basketball. He roots for UNC and Georgia. I root for Tennessee and Alabama. :) He told me before the injection that I wouldn't see any results today or tomorrow or even in the next few days. It may take a week or so and it could also backfire on me and cause me even more walking problems, but we have to try, right?! He said that if it does cause my walking to be worse, he could prescribe a brace for me to wear until the effects of the Botox wear off. He also said physical therapy could help. He almost got me to commit to PT. He said, "If I prescribed it, would you do it?" and I stopped short of fully committing to it. I know I should, but...well, let's just say it's not completely off the table yet, but it's on hold. ;)  After the injection I thanked him so much for distracting me while he gave it to me. Again, I'm not sure why the needle gave me hesitation, I mean, I have had deep brain stimulation surgery, but it did and he diffused my anxiety.

So now, I wait. What's new - ha! I feel like I'm constantly in a waiting game. :) I obviously have not mastered patience, so once again, God's teaching me! So, I wait, but not without hope! Because after all... God's Got This!

Tune-In-Tuesday (But on a Saturday): March 19, 2022

It's fitting that I'm writing this "Tune-in-Tuesday" today (Saturday), as I woke up this morning and was convinced it was Tuesday. I was going over in my mind what meetings I had and what I had to do and then it struck me that it was actually Saturday, and I could sleep in - haha! I haven't updated in over a month, so I thought I'd do that today.

I'm all in my feels today. I went to the funeral of a friend's mom earlier today and then came home and watched another funeral online and so, at home, by myself, I've just let myself cry. It's good to do that from time to time - get a good cleansing cry out. I'm a crier to begin with. It doesn't take much to make me cry. It's dreary out today. It's colder than I like. March is not my favorite month of the year mainly because of March 21. I'm sorry if that's your birthday or anniversary. I am genuinely happy for anyone who celebrates on that day. But we all have our days, right - the ones that are tougher than others?! Mine's March 21 - the day my sister was born and died. So today, I let myself cry.

How did I get on the paragraph above?! I meant to come on here and tell you what's been going on health-wise with me. Emotional health is health too, so the above is not completely off-base. But, on to dystonia. In the month since I've last updated, I've gotten back to "playing" with the settings in my deep brain stimulation device. I was on 3.30 volts of electricity on Group A. I know that means nothing to most of you reading this but writing it in this blog gives me a reminder of where I was at, at any given point. (To that point, I should read my blog posts before I go to the neurologist as a quick reminder of what I've done.) I took myself up to 3.40 volts and remained on Group A. It wasn't enough, but I waited two weeks to see if anything happened. It didn't. So, two weeks after going up to 3.40, I was being impatient and went up two volts to 3.60. Spoiler alert: it proved to be too much. But, again, I waited two weeks on 3.60 to see if things evened out. They didn't.  (As a refresher in case you're wondering why I wait for two weeks in between "playing" with the settings, it's because my neurologist said to do that. It takes about that length of time to see what the electricity will do to my body.) This past Tuesday (March 16), I brought the electricity down a notch to 3.50. Now, I feel like it's too little. 

SO.FRUSTRATING.

Waiting is the absolute hardest thing for me. I know God's got to be teaching me something, but I don't like it! Waiting, waiting, waiting. I feel like I'm always waiting. I am choosing to grow while I wait. Sometimes I excel at that and sometimes it's a massive failure. It's so very hard, but with God's help, I will grow.

I'm still scheduled to get Botox injections on April 13 (pending insurance approval). Hopefully that, combined with the deep brain stimulation and medication, will help. I've walked without a walker or cane before. I know I will again - I just have to wait on God's perfect timing.

Always remember....God's Got This!

Tune-In-Tuesday (but on a Saturday): February 12, 2022

I'm back!!!!!!!! Haha. I took an almost 5-month sabbatical from updating this blog partly because life got really busy (but when is it not?!) and partly because I really had no significant updates to post about. As much as I'm "out there" in these posts, after I post a new blog, I get somewhat embarrassed at times about what I've shared (even though it's the truth). It is much easier for me to share in written word then face-to-face (again, I get shy and introverted). So, I just needed a little break, but today I feel like writing and sharing, so I'll update you on what's been going on with me.

The past 5 months have been rough. If you've seen me face-to-face in real life you know I've been using my walker and cane almost always. I don't know what happened, but ever since my last (deep brain stimulation) battery-replacement surgery (which was in January 2021), I've never regained the walking ability I had been experiencing before that battery started dying. Half of me thinks it's my fault for not pushing myself as hard as I had been - pushing myself to be brave and walk. When I use the walker, I don't have to think about walking at all, I walk like a normal person would. When I use the cane, I think about walking a little more. When I walk unassisted, my brain is in over-drive, and I have to put all my concentration into walking without falling. So, I equate (in my messed up, imperfect brain) using the walker with laziness. No one's ever told me that or put that thought in my head except for myself (so I have no one to blame but myself - ha!). In fact, most people want me to walk with the walker (if I feel like I need to) to keep from falling (at least in wide open spaces like parking lots where I tend to fall a lot). In my brain, I feel like since I had the deep brain stimulation surgery, if I use the walker or cane, I'm a failure. Have I told ya'll before I'm a very black and white person?! There's no middle ground with me - I'm either all in or all out. ;) 

Since my last post (way back in September 2021) I have not changed any of the settings on my deep brain stimulation device. I've needed to, I just haven't. I got tired of "playing" with the settings trying to find the "sweet spot". I just threw the towel in so to speak and kept it where it was. Pretty much the only places I don't use a walker or a cane are at my house, my parent's house or at yoga. :) BUT - I'm feeling inspired again to work on walking without any assistance.

I saw my neurologist this past Thursday (February 10). This is probably where my inspiration to work at walking unassisted again came from. I used a cane to get into his office, but I probably should have used the walker. :) This is so me, but so weird too: I don't mind using the walker anywhere else, but when it comes to walking into the neurologist's office, I don't want to use it. I don't even want to use a cane, but this time I had to. It's like I want to impress him or make him proud or something. But at the same time, I do want to show him exactly how bad it is so we (he) can fix it. Sometimes, I wonder if he can read my mind. I mean he can give me more (or less) electricity - haha. But in reality, he probably really knows all the questions to ask to get the answers he needs because he point-blank just asked if I was using the walker a lot. I told him I was. After doing all the neuro exams (you know, "tap your fingers"...) he wanted to see me walk. This is my least favorite part of the appointment but the one that tells him the most. I got up and didn't take my cane. He asked if I needed it and I said I wanted him to see me walk without it. He said, "This is a no-fall clinic. We're at a 100% with no one falling here, so you're not allowed to fall." He made me laugh! He watched me take a few steps and then he ended the walking portion of the exam. ;) He could tell I was/am really struggling. When he asked if I had changed any of the settings in the deep brain stimulation device, I told him I had slept since then and really couldn't remember. He checked and reminded me that I did switch from Group D back to my favorite, Group A after only a month of being on Group D. But after that switch, I hadn't made any other adjustments. He asked why I switched, and I told him that I really couldn't remember but it must have been because I was having a harder time on it. I told him I was tired of "playing" with the settings and he said he completely understood. He asked if I had ever tried Botox. I told him I had, but it had been years (way before seeing him). The very first neurologist that I ever saw when I first started having symptoms gave me Botox, but it never worked on me. Come to find out, I had built up an immunity to it. I only found this out after that first neurologist tested my blood for it. Years later, when I went to the Mayo Clinic, they told me that it was probably that neurologist who caused me to build up an immunity by injecting the Botox too often. I think the standard (or at least it was back then) is to inject it every 3 months. Anyway, I learned from the Mayo Clinic that there are different strands of Botox that can be used. So, let's say that first neurologist injected me with strand A, the Mayo Clinic used strand B. Anyway, back to current day: Dr. T. said that he'd like to try it (again) on me. He said he could inject it into a couple of different places (my foot, my hamstring) because they were all extremely tight, but that he would probably just do the foot first. The downside to having Botox is that it will make everything loose (which is the point), but it may make walking harder for me - we just have to see. If it's the curling of my foot inward that is causing me to have difficulty walking, then Botox will help a lot, but if it's weakness, then it will do more harm than good. Again, it's all a test and see sort of experiment. The good (or bad) thing about Botox is it wears off in three months - so if it makes my walking worse, then in three months I'll be back to my normal. That could also be a bad thing, because if it does work, then it will only be for three months, and I'll have to keep getting Botox injections.  I have to get (better yet, Dr. T.'s office will do it for me) insurance pre-approval first, but we went ahead and set the appointment for April 13 (the soonest he had available). I asked if he was going to do it (give me the injection) and he said yes. ;) There's something in knowing a doctor you trust will do it instead of someone you've never met. I'm hoping between the deep brain stimulator, the medication I'm on and the Botox, that it'll all work together and get me back on my feet. 

For the most part, I try to stay upbeat about my situation, but don't get me wrong there are days or seasons when I'm just frustrated and sad about the whole situation. I told my yoga instructor on Friday that I don't really even remember anymore what life was like before dystonia, when I could run free! It's been 16 years since I first started having symptoms. There are times when I watch people walk in parking lots without a care in the world (walking-wise at least). They run in and out of stores without a second thought. That's not me. I strategically look for a parking spot that's near a shopping cart. If there aren't any, I've been known to just leave (although that was a long time ago! I usually will either find a spot or just end up taking my walker in now). It's a reminder to me to not take for granted what I do have. I can get around - thank Jesus! I can walk. I can move. It's just different. Even now, after 6 years (it's coming up on the anniversaries of my deep brain stimulation surgeries this month), I would completely have DBS surgery all over again. Yes, even with the problems I'm still experiencing today. You won't know if something works if you don't try that something. There are those out there that go skydiving or rock climbing to push themselves out of their comfort zones and then there's me - I try different medical procedures to keep pushing towards a "cure". As I told my neurologist on Thursday, "I want perfection. I know, I'll never get it, but I still want it." He (my neurologist) and I are a lot alike in the sense that he wants perfection too. He wants his patients to get better. He's in his patient's corner always and isn't afraid to try everything to get them well. That's got to be hard, because in a lot of the diseases he sees in his patients on a daily basis, there is no cure (yet!), but there's always hope, right? Yes, there's always, always hope.   

I told Dr. T. that I think this pandemic we're in has affected my walking negatively. I'm not walking as much as I was pre-pandemic. But hasn't this pandemic done a lot to all of us, just in different ways? So, I can't put full blame on that. In fact, I can't put blame on anything - it just is what it is! 

So, now you're as up to date as you can possibly be! Thanks for reading! 

As always - God's Got This!!