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!
