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!!

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!