Tune-in Tuesday (but on a Wednesday): August 14, 2024

It's been three months since my last update. It's been a busy summer and while there were several times I thought about updating, I ended up being too lazy or too busy to do so.

In my last post I said that I was going to start physical therapy again and that I was going to "play" with the settings again in my deep brain stimulation device. Only one of those things happened. I did not start physical therapy. They never called to set it up and I got so busy with a project at work, that I didn't follow up with it. I know both of those are lame excuses, but they are what they are. I did play with the settings in my DBS device though, and it turned out to be disastrous. I haven't walked well in a while. Even though the neurologist said only to go up a little bit at a time, I went from 3.5 volts to 3.8 volts on May 27. I couldn't even last the full two weeks he likes me to stay on a setting (before determining if it's too much, too little or just enough) and brought it back down to 3.6 volts on June 4. I waited until July 1 and determined that I needed more electricity, so I went up to 3.7 volts then. By July 13, I went down to 3.6 volts. And on August 1, I gave up completely and conceded that maybe 3.5 volts was where I was actually supposed to be. So, I "played" all summer, and it got me right back to where I started from - ugh!

It's very hard for me to explain how I feel when I try to walk and how I feel when I think I have too much or too little electricity. Sometimes it feels like my leg and/or foot won't support me. Sometimes it feels like if I were to bend my knee that my leg would spasm. Sometimes I feel completely off-balance. Sometimes my leg just spasms and/or jerks. Sometimes my foot turns in. Sometimes my foot just gives out. It's frustrating to no end.

I'm not going to lie, today I've been bummed. I've wanted to burst out crying all day, but thankfully have not (at least not when out in public). I had my return visit with my neurologist for more Botox. Only today was different. Dr. T. said that he didn't think the Botox was working and I couldn't seem to give him a straight answer about it either. I couldn't say confidently that I felt it working, nor could I confidently say that it wasn't. He has always said that he doesn't want to give me Botox just for the sake of giving me Botox. He asked if I had fallen in the 3 months since he had last seen me. I said I couldn't remember specifically, but I probably did. I told him walking has been a great struggle recently. Even walking with the walker has been hard. He is worried that the Botox is doing more harm than good: that it's making my leg too weak (after all, Botox paralyzes the muscles it's injected in to). The only way to tell whether Botox is helping or hurting me is to stop getting it. So, he made the decision (and I eventually got on board with it) not to give me Botox today. Where I was once sad to even start getting Botox injections, today I was sad I didn't get them - how messed up is that?! So, we're pivoting. The new plan is to start physical therapy and I'm going to get an ankle brace in the hopes that it will give me stability. He's also put me back onto the rotation to see him in the neurology department as opposed to just being on the clinical side of things getting the Botox injections. That's one thing I have "missed" per se with just getting Botox injections. Though he does check my DBS settings, my visits are more about getting the injection and then leaving. There is no real office appointment where he really watches me walk (although I highly dislike anyone watching me walk, especially the neurologist - haha) or we can discuss things in more detail. I do have to wait until January 2025 to get in to see Dr. T.'s PA. And then Dr. T. will see me in April. The physical therapy office called me this afternoon and my first appointment is scheduled for August 23. I'm going back to the same place I went to last year. If you're wondering why I've been bummed all day and wanting to cry, well that makes two of us. I have no idea either. It's not like I got horrible news. All I can come up with is that it once again reminds me that though my condition is not fatal, it is frustrating!! Don't get me wrong, I am very, very blessed that it is not fatal, but sometimes the frustrating part of it gets to me and I get sad. Even after all these years I think I can "will" myself to walk normally and then realize I can't. I had somewhat of a pity-party for myself today (internally that is; externally, I hope I portrayed myself as happy!). But even though I was sad and felt like crying there were things that did make me happy today: someone at work complimented me on my dress saying it was so bright and cheerful. I watched a video at work that literally had me laughing so hard I was crying (and that doesn't happen all that often - although yes, I do watch videos for work). A co-worker gave me sweet and encouraging words. I went to pick up my prescriptions that the neurologist had just renewed and the girl in the pharmacy couldn't pronounce one of the drugs and it made me laugh because I had the same exact issue earlier that morning trying to pronounce it for Dr. T. I went to church tonight (even though I really didn't feel like it) and it uplifted me.

So that's where I'm at right now - somewhere between disappointment and hopefulness. I know without a shadow of a doubt though that God is still doing amazing things with my life. Maybe, in this time, He is humbling me. Or maybe He's making me more patient. He knows I need help with both of those areas. :) 

But in all things...God's Got This!

Tune-In-Tuesday (but on a Thursday): May 9, 2024

 Hi everyone! I promised myself I would do better about updating this blog, but yet again, another 3 months have gone by, and I have in fact not updated this blog. This is partly due to the fact that there has really been nothing to update you on (I say this and watch, I'll have what amounts to a 50-page blog post). To be honest, I've not had a good 3 months in regard to walking. I have no clue as to why either. It's been a struggle. 

I had my 3-month BOTOX appointment with my neurologist yesterday. Here's how it went. My appointment was at 8am. I told my manager the day before that I would be (probably) be late for work. My famous last words were, "Hopefully, they won't be backed up too much." Ha! While my neurologist was not backed up at all, the registration process was. I arrived at 7:45am. I rarely ever get there 15-20 minutes early like they say to, but yesterday felt different, so I was early. There was only 1 woman checking people in (there are normally 3) and while I went to my neurologist's office - it was the "testing center" (for lack of a better word!) part of the office. This testing center is a part of the hospital system and does everything from mammograms to echos to X-rays, so it's not just for neurological tests. I had to wait a few minutes as I was not first in line, but I got there just in time to be second and avoid the massive amount of people who filed in behind me. I was checked in by 8am, but others who had 8am appointments were not. Dr. T. came from his office area and walked with me to the exam room. I was his first patient of the day, so he had to set the room up and mix the BOTOX injection. Now, I, along with most everyone else in this world know that people get BOTOX for cosmetic purposes (I have to sign a waiver every time I get it that I am getting it for medical purposes and not cosmetic purposes). I also know that people get it to help with migraines. I've been mulling over this as I don't think I would ever get it for cosmetic purposes. It hurts too much! So, I finally asked Dr. T. about it. Like, do they inject it right into people's foreheads and how does that not hurt?!?! Come to find out, they do inject directly into the forehead but with the tiniest of needles. Dr. T. said he would show me the needle and he did. It's SO TINY!!  And then he brought out the needle he does my injections with and it's HUGE. Seriously. I'm not exaggerating for sympathy - I promise! I asked why he couldn't use the smaller needle and he said it's because he has to go so deep into my muscle. No wonder it hurts so bad. And now I know why people who get BOTOX for cosmetic purposes have said that it doesn't hurt at all. Same drug, different needles!!!!!! As he mixed the BOTOX, I told Dr. T. that for whatever reason I didn't see results this last time. I've been walking on the outside of my foot. Not on purpose - it's just the way my foot lands on the floor. Once I recognize that I'm walking that way, I correct myself. I asked Dr. T. if BOTOX is an accumulative drug - meaning after several uses does it build up in your system and work better. It's not and it doesn't (hence having to get it every 3 months.). I was hoping that might have been the issue because I was 6 weeks behind getting it this year due to my insurance changing and having to get approval for it. I get BOTOX every 3 months, but when I got my last shot in February, I had not gotten it in 4.5 months. I thought that could have thrown it off. But Dr. T. said that wasn't the case. As he mixed the Botox, he said, "I'm going to give it one more shake since you said it didn't work last time." I said, "Does that work?!". He smiled and said, "In my head it does." Haha!! I guess doctors can be superstitious, just like the rest of us.

I had a question to ask Dr. T. and I knew it was going to be a silly question, but I also knew that I had to hear him say it out loud for me to feel better. So, I asked. I prefaced it with, you're going to laugh at this question. I had a co-worker pass away last month from ALS. I also follow a really cool girl on Instagram who has ALS. In my co-worker's case, she was officially diagnosed in November 2023 and passed away in April 2024. In the case of the girl who I follow on Instagram, it took 4 years for her to get diagnosed. My co-worker was in her 60's but the girl I follow on Instagram is in her early thirties.  So, ALS has been on my mind lately. As much as I don't want to admit this, at times, I can be a hypochondriac. There I said it. My guess is that you can guess what my question was. :) So, I asked Dr. T., "Do I have ALS?" And his response was an adamant, "No. You do NOT have ALS." And that's all I needed to hear. It was as simple as that but hearing it from anyone else other than him was not going to satisfy me. I think he knew that too. :) All of that talk lead me to tell him about the first doctor's appointment I had after I started having trouble walking. I went to my internist. I, at first, thought maybe it was something psychiatric, but was assured after seeing my internist, it was something physical. To this, Dr. T. said, "It's most definitely physical. There is nothing psychological about this." One thing that has come from all of this thinking about ALS is that I have now deemed my condition as just plain frustrating. I'm not going to die of it (thank you, Jesus!), but boy do I get frustrated by it! I've said this on several occasions to people: "I was here on time; however, I forget that I can't just run in from the parking lot into your office." I must remember that even if I'm "on-time" for something, that doesn't mean I'm not going to be late because it takes me 10 years to walk in! :) So yes, my condition, my disease is nothing if it's not frustrating. 

Dr. T. checked my muscle strength and declared that I was "really strong". He says this every time. ;) I think he sometimes may forget that my muscles are strong! I know I'm strong - haha! It's the signal between my brain and my muscles that isn't strong. 

Dr. T. remembered that my family has a crazy birthday/anniversary schedule in June, and we bantered about that while he checked all my deep brain stimulator settings. Everything was good there. On a side note - June 7 will mark one year since I got a rechargeable battery implanted. That means for one whole year I've recharged myself every week. I didn't think I would last that long as the wonder and excitement of it wore off probably by the 2nd week.  I have to dedicate an hour or so to being hooked up to an electricity source while charging myself up for the week to come. I'm kind of proud of myself!

Finally, it was time for the injection. It hurt. I'm not going to lie. Just be glad you don't have to have it done. :) It doesn't last long, but long enough! Dr. T. asked, "You good?" And I was after he was done, but I wanted nothing more than to jerk my leg away while he was injecting it. After my leg, he injects the BOTOX into my hamstring and that goes WAY better. I wondered out loud why it does, and he said he doesn't have to go as far into the muscle. So now I know. :)

Dr. T. asked if I'd like to do physical therapy again. I don't really want to do it per se, but I know it helped. I said yes if I could get Courtney again to which Dr. T. said, "Isn't she great?" She is! So, he ordered the PT. I asked if he thinks I should try to work with different settings again in my DBS system. He said it couldn't hurt. We decided I should wait about 2 weeks though (so that the BOTOX can kick in) and then I can play. He also said that he would love it if I checked in with him in about a month and a half to let him know how things were going, so I said I would. I just hope I remember to - ha! 

One thing I haven't mentioned on this blog (I don't think) is how Dr. T. thinks that (in hindsight) the toe surgery I had a few years ago ended up being something he regrets telling me I could do because he thinks it messed with my walking. At the time, I had a camel toe which was causing me a lot of pain. Another of my toes has not been straight since I broke it walking on the beach years ago. During the surgery the podiatrist did lots of things (including fixing the camel toe and straightening out my toe - it doesn't bend anymore) and in hindsight I probably "fixed" something while "breaking" something else, so to speak. It's no one's fault. It is what it is. Who knows - my walking may have gotten even worse if I didn't have the surgery (that was all of our thinking at the time). I mention this because Dr. T. brought it up. He thinks that my walking has gotten worse because of it, but I'm not so sure. Sometimes I find myself thinking I'm not brave enough to try again to walk without a walker or cane. I mean, I DO walk without a walker or a cane at home, but otherwise I use one or the other. Maybe if I built my courage up, I could do it again. Maybe I could, maybe I couldn't. Maybe within the next few months I'll try again (especially if PT works!). I asked Dr. T. if he could write me a prescription to go on a beach vacation every three months instead of getting BOTOX. He laughed and said he wished he could!

And now that I have written another small book, I'll close! If you've made it this far, thank you for reading! I'll try to update more (maybe my month and a half check in with Dr. T. or PT will make me update more), but if not, my next BOTOX appointment is in August. 

As always...God's Got This!

Tune-in Tuesday (but on a Monday): February 19, 2024

Oh, my goodness - I knew that I hadn't written a blog update in a while; I had no clue that I hadn't written one since AUGUST 1, 2023. So, I guess I have a little bit of catching up to do here in this space. It's been so long since I've written a blog post that the interface changed on this sight. ;) 

Wow. OK, catching you up since August. For the most part, not a ton has changed with me medically speaking. Although, since my last post, I fell hard and for the first time really thought I injured myself. Did I take myself to the doctor? Well, no, not until a couple of months later (I know, I know...don't lecture me!). I slipped in my kitchen. I knew I was going down and tried to catch myself, but it all happened so fast and catching myself didn't work and I fell hard on my right elbow. It was hard enough for me to think to myself, "Well, that's going to leave a mark!" And it did but not really in the way I thought it would. I probably sprained it really badI knew I had not broken it because I could move it. A couple of times I had a shooting pain go up my arm. I DID bring this all up to my GP doctor when I saw him in early October. I might have even asked my ER brother about it, but since it happened back in August, I can't remember! MY GP at first suggested an X-ray, but by the end of the appointment said that he changed his mind. I was right - he knew I hadn't broken it because I had full range of motion. The only time it really hurt is if I bumped it. He said whatever damage was done (again, probably just a sprain) was done and it would heal on its own. Whew. I seriously don't recommend following my example(s) of NOT going to the doctor, but it is what it is. Around the middle of January, it started "hurting" again. It didn't hurt in the normal way. It only hurt if I accidentally brushed up against it or touched it. It was swollen and just felt weird. Flash forward to January 26: I am out to lunch with my entire (local) family. My ER doctor brother was sitting across from me at the restaurant, and I asked if he would look at my elbow. I literally lifted my sleeve up and within 10 seconds he said "Oh, that's bursitis." I determined that it started hurting again because I had been taking all my Christmas decorations down and cleaning out this one room in my house and had accidentally bumped my elbow numerous times while juggling boxes and containers and heavy stuff. So, yeah, I guess I have bursitis now - yay me! 

I continued with physical therapy (that I started back in July 2023) until my insurance wouldn't cover it anymore for the year (which happened to be the very end of October). I can't believe I'm saying this, but I actually loved PT! I loved my physical therapist, Courtney, and I loved that she was in touch with my neurologist. There were a couple of funny moments in PT. Courtney "allowed" me to use my cane "the wrong way" for the first couple of months that I saw her. She said (as my neurologist says), "Whatever works." But one day, she suggested trying to use it the "correct way". A quick tutorial on walking with a cane: You walk with the cane on the opposite side of your injury/bad leg/dystonic leg. In my case, that would mean that I would hold my cane in my right hand since my left leg is the one affected by dystonia. I have known this since shortly after having to use a cane. But...way before I was ever diagnosed with dystonia, I was self-helping myself without even knowing it! It turns out that people with dystonia help ease their symptoms by massaging the area that's affected. Meaning, if my leg is cramping up, I will mindlessly touch it and try to ease the spasms. The left side of my body is affected by dystonia. This includes my hand and arm. By holding my cane in my left hand (even though it's not my dominant hand) it helped relieve the spasms in that hand. Also, I will use the cane sometimes just to touch my left leg and sometimes even that little bit of touch, helps to calm the spasms. OK - back to the funny thing that happened in PT: Courtney was watching me walk with the cane in my right hand and I was doing exercises and the like. Towards the end of the session, I had sat down in a chair to do some of the exercises. As I got up and walked over to where Courtney was, I instinctively put my cane in my left hand and walked. I didn't even realize what I had done until I was halfway to her, and I stopped and said to her, "I'm so sorry!" and switched the cane to my right hand. She burst out laughing and admitted that she didn't even catch that I was holding it in the wrong hand. I DO try to walk "correctly" with the cane, but it's been a struggle I must admit. I feel so much more comfortable using my left hand. Whatever works, right?!

Another funny instance at PT was when I almost fell right in front of two physical therapists. I was getting a little cocky (probably) and comfortable (definitely) and was doing exercises. I don't really remember the exact exercise I was doing, but I was not holding on to anything but was near some parallel bars. My PT place has this big open area where the therapy goes on and there are 3 or 4 different physical therapists at this location. I was the only patient in the big open room doing exercises at the time with my physical therapist. There was another physical therapist there too who had just finished with his patient. We were all talking to each other, ironically, about falling, when I lost my balance and stumbled. I caught myself and did NOT fall, but you should have seen the look on both faces of the physical therapists in the room. I thought the eyes of the physical therapist who was not my PT were going to pop out. Both my physical therapist and the other PT lunged towards me, but I had successfully caught myself (thanks to the parallel bars in front of me). I burst out laughing. The PT's - not so much. It made for a memorable session, no one got hurt and we all survived!

I saw my neurologist at the beginning of October 2023. We (I) decided that I would like less Botox in my left posterior tibialis. Yes, I got that name in the notes from my appointment because I don't really go around talking about my posterior tibialis - ha. In case you also don't know what/where this is in the leg, see the below picture of my leg with the band-aid. That's where it is. ;)

It controls my foot curling in or being straight. I just felt like it was too much Botox the time before. Botox paralyzes the muscle(s) that it is injected in to, so it causes weakness in that muscle(s) and I felt like it was causing too much weakness and my foot was curling in way too much. It's a fine balance between Botox helping or hurting me. My neurologist was on board for giving me less. He's always worried about giving me too much Botox and me falling all the time. The only remedy for too much Botox is to have it wear off naturally in 3 months. He also injects my left hamstring and that seems to really help! So instead of 100 units of Box, I got 90 (30 in the tibialis and 60 in the hamstring). I don't know why, but it always hurts more in the tibialis then the hamstring (probably because there's more meat in the hamstring). My neurologist always tries to distract me while injecting it. This time we talked about the speech he had to make later that day to a room of about 400 people at a Parkinson's symposium. I spoke about the speech I was giving at the end of the month at my Dad's retirement party. He said I was more than welcome to give his speech for him. Yeah, I let him give his own speech! My return appointment was made for the very beginning of January 2024. We both ended up making it through our respective speeches too!

In November 2023, Dad and I took a weeklong father/daughter trip to the beach. While I know the beach is not my dad's absolute favorite, he knows it is mine and that I feel free walking on the sand. We did a nostalgic trip and stayed where we stayed many years ago when we visited the beach each summer for Elseroad family reunions - Venus Condominiums on Ft. Walton Beach. We had a wonderful, relaxing (if not melancholily and/or bittersweet at times) time. I was able to walk freely on the beach without worry of falling. I did, however fall, a few times actually. But I didn't care (as much) as I fell on sand, and it didn't hurt! I also realized in November that my company was making a slight change to our insurance which meant that we would look like "new" clients and we would be getting a new insurance card. My Botox has to be pre-approved by insurance before I can receive it. God bless, Erika from Dr. T.'s office. She's had to deal with my insurance changing on me now for a few years. Unfortunately for me, the (new) insurance company wouldn't recognize me in their system until January 1, 2024, so Erika couldn't speak with them until January 2 which would only give her one full day to get it pre-approved (as my appointment was on January 3, 2024).   

Erika from Dr. T's office and I were in what seemed like constant contact all of December, but to no avail. I had to relinquish my January 3 appointment. The earliest Dr. T. could get me in was February 14, 2024 - Valentine's Day and a whole 6 weeks past my due date to receive Botox. Erika said she would do her best to get me in sooner if a cancellation came in. 

By late December 2023/early January 2024, I could feel the Botox wearing off. It's almost like a switch turns off and reminds me every time that the Botox is helping! I don't really know how to describe it other than I get very wobbly on my feet (even more so than I already am!). I lose my balance very quickly and it's harder to walk in general. Erika and I were in touch all of January. I got a rejection notice in the mail from the insurance company in early January saying they would not cover the Botox or the doctor visit. I knew that Erika was working on it, and I didn't have to worry. On January 18 I was finally approved! I thanked Erika profusely and she told me that it was denied at first because of a diagnosis code. Then Dr. T. was able to have a peer to peer and resolve that issue but then an issue arose concerning the procedure code and that took a while to resolve. I have never really appreciated enough the people behind the scenes that fight for me to get these procedures, but Erika is a godsend!!!

No earlier Botox appointments arose before February 14. I had some spills in January. One of the biggest being at the dump - haha! It was like my 3rd or 4th trip there that day and I had this heavy bag of trash in my arms and somehow didn't see the drain in the concrete. It made the concrete dip a little and I majorly twisted my ankle. It hurt so bad that I just kind of laid there for a minute. I heard a guy behind me ask if I was OK or needed help up. I said I was, and I didn't need any help. He assured me that he's done the same thing. As when I fell at home and hurt my elbow, I knew that I hadn't broken anything. I was actually really surprised when I stood up and it actually felt better to walk on it then to be still.  By the end of the day, I had completely forgotten about the fall until I went to sit down and curled my leg under me (like I normally do). My ankle hurt! I took my sock off and realized that it was really swollen, so I iced and elevated it. It's always something!

It's amazing what kids pick up on. I was babysitting my nieces one night and my 5-year-old niece started talking about all my devices and when I need or don't need to use them. She said this to me. "So, you have to use your cane to get into our house, but then you don't have to use anything! At church you use the walker to get in (it's the parking lot that gives me problems!), but then during church you put the walker on the back wall and only use your cane. But then when we go to the mailboxes (our church mailboxes) you use the walker again and Gwen and I can ride on it." She has it down pat! :)

For the first time in eight years, I forgot what I had done on February 14, 2016, but Facebook reminded me. Valentine's Day 2016, I had all my hair cut (then shaved) off in preparation for deep brain stimulation surgery. I believe I was meant to not have a neurologist appointment this year until Valentine's Day. I reminded Dr. T. of what happened 8 years ago (we've known each other that long - actually longer!) and he remarked that that must have made for a fun Valentine's Day. Here's me bald in 2016 and with hair on February 14, 2024:

I was excited (maybe not the right word!) to get Botox this year as I needed it so bad! I was Dr. T's first patient in the clinic that day, so he met me in the lobby and we walked back to the room together. He got everything set up and mixed (Botox with saline). We agreed that we would continue with the lesser dose in my tibialis and keep the same dose in my hamstring that we did in October 2023. I turn into kind of baby when getting it in my tibialis. 1) because I can see it going in 2) there must be a nerve near there because once in a blue moon Dr. T. will get close enough to it that it literally feels like a stake is being driven through the bottom of my foot. 3) I just don't like needles, especially when they are going in me. Dr. T. has figured out though that if we talk and he distracts me enough he can get it in without me passing out. OK, I've never actually passed out, but he gets me to relax enough to get it over with quickly. I will literally pull my leg away from him though when I see the needle getting close, so he has to hold it tight and get me to look away. Why am I like this?! To distract me, we talked about Mardi Gras. He's been to New Orleans once during Mardi Gras. I have not. That somehow lead us to talk about ghosts (I know, random!). He said that he and his wife and kids went on a (family-friendly) ghost hunting adventure in New Orleans. I told him I work on ghost stories at work (I'll admit my job is fascinating!). As he was injecting the Botox this time, I instantly felt my toe relax. (it doesn't happen that quick, but for whatever reason that day it did). Dr. T. did not get anywhere near a nerve so, although the injection was not comfortable, it wasn't excruciating either. The injection site bled a lot this time. He put a band-aid on it, and I thought, "How appropriate - it's red for Valentine's Day." Until I looked at it more closely and asked, "Is that Clifford The Big Red Dog?!" Dr. T. confirmed it was and apologized for having no adult band-aids (his neurology clinic is on the second floor of a building that houses the UT Kids GI clinic - they were there first!)

Then he had me lay down so he could inject my hamstring. That part is always no problem. Go figure! He did ask me if I wanted him to tell me when he was injecting the needle. At first I said no, then quickly changed my mind and said yes, so he told me, and it was fine. :)  And then I was done. Before I left, I made sure that he would tell Erika thank you again for getting all the insurance stuff worked out. I also thanked him too for his part in getting the insurance worked out. My next appointment is in May. 

It takes about two weeks to see the effects of the Botox injections. I haven't had the best walking days lately and I actually fell this morning (I didn't hurt myself). Since I was 6 weeks past due for Botox, I have a feeling it'll be like starting over again. I know how this works. The Botox will eventually travel where I need it to in my leg and foot and I'll get "stronger". That feels like an oxymoron. How can you get stronger when the injection you got literally paralyzes the muscles? But I hope you know what I mean by that. :)

If you've made it this far - thank you for reading my book - or long essay - ha! I promise not to wait another 6 months to update this blog! 

As always...God's Got This!