Tuesday, May 30, 2017

Turn-It-Up Tuesday: May 30

It's been awhile since I've had a "turn-it-up" Tuesday, but today, I did turn my deep brain stimulation device up. Two weeks ago, I turned it down, but in the time since, I've realized I actually need it up, so I'm at 3.00 volts on Frequency C now. We'll see what that does. ;) I'm hoping to get in contact with my (formally Nashville) neurologist, Dr. Tolleson, who now lives here in Knoxville and works at the same hospital as my brother. Dr. T. moved here in May and had told me that he'd probably need the whole month to set up and get going, but he could probably see me in June. Now that June is almost here, I need to call and set up an appointment.

This past week I finally got miserable enough wearing the boot 24/7, that I gave the night splint that Dr. Gardner (the foot doctor) gave me another try and this time, I didn't feel like I was going to unintentionally injure my foot while I slept. So, I 've been wearing it every night since. I was finally getting some good night's sleep. That was until the weekend and then all of the sudden, I started waking up again in the middle of the night, my foot and toes aching. Oh well. ;)

I continue to ice my foot every night. I'm hoping this will come to an end when I see Dr. Gardner again this coming Thursday. It's a whole routine in and of itself! That, coupled with taping two of my toes is now a nightly ritual. ;)

I don't know what it is - maybe I'm just that much more aware, but I've seen more people in boots over these past few weeks then ever before. Just Saturday, there were 4 different people in Kroger wearing them. I joked at the beginning of all of this that wearing a boot was all the rage right now and all the cool kids are doing it, but I was trying to be funny! It now seems like that's actually coming true - haha. I had a 20 minute conversation with a lady in Kroger about it. She had just gotten out of hers after breaking her ankle. This is my PSA: Be careful out there!

So, that's a mini-update from me. Not a whole lot to say, but that's good too sometimes!

I hope everyone has a fantastic week and always remember, God's Got This!

Tuesday, May 23, 2017

Tune-In-Tuesday: May 23

This past week has been pretty good, minus the mini pity party I had for myself on Thursday. I have NOTHING to complain about! Sitting here tonight, writing this post, I can truly say I'm blessed and thankful. So, please forgive me for the pity party that was some of Thursday's post. I'm much better now - haha!!

I've been icing my foot religiously every night. I do it while eating ice cream - somehow that makes it better and more tolerable! I continue to wrap two of my toes in tape and then wrap the whole foot in the Ace bandage and then securely put it in the boot. I tried using the "night boot" that Dr. Gardner gave me, but I'm such a wild sleeper that after the first night in it, I felt like it didn't give me enough protection, so I've gone back to wearing the boot that I wear everywhere.

The compounding pharmacy called me about the compounded topical (cream) medicine that Dr. Gardner wrote me a prescription for. It turns out my insurance won't cover it and it's $45. While $45 isn't super steep, I decided against getting the prescription filled. If it were life and death, then of course I would get it, but since it's not, I decided against it. However, that decision may be causing me some rather sleepless nights. ;) The cream was to have some numbing medication in it and I assume that would have helped with the aching that tends to wake me up every night. My foot and toes just ache. Not a stabbing or even irritating pain, just an ache. I've said this before, but my foot and toes actually feel better when I'm walking then when just sitting still.

The callous on the bottom of my foot is looking better. Just last night I started to see progress. I was beginning to think it would never start healing. Let's remember, patience is not a virtue I score highly on! But it's starting to heal now - praise the Lord!

At church on Sunday, my friend Kaitlyn said that she put two-and-two together and realized that her boyfriend saw Dr. Gardner for an issue he was having. Small world it is!! ;)

I haven't adjusted any of the settings in my deep brain stimulation device since last Thursday. I think I might need to, but I am trying to give it a little more time to get used to the setting that it's on now. I walk fine, but it's when I sit that my foot does not want to be still. I'm kind of wondering if my boot is helping me walk. When it comes off, I'll have to rely solely on the electricity in my brain, so I may have to adjust it then. But, who knows? Maybe things will even out by then. I'm grateful I have the ability to adjust the electricity as I see fit. It's an amazing world we live in - I can adjust the amount of electricity that my brain gets - how cool is that?!

I hope everyone has a safe, relaxing and fun Memorial Day weekend. Always remember, God's Got This!

Thursday, May 18, 2017

Tune-In-Tuesday (but on a Thursday): May 18, Foot Doctor Update

I saw Dr. Gardner (the foot doctor) today and here's how it went...

His nurse had a doozy of a time getting the Velcro off of the boot. I promised her that I have been taking the boot off every day to get a shower in the morning and to ice it at night (thinking that the more I take it on and off, the easier the Velcro would come off). She had such a hard time this time, that I offered to help and did, but that Velcro didn't move until we were both pulling on it! She then took the Ace bandage off. Thankfully, I washed that last night. If I had not, everyone within a mile radius of us would have died from the smell. It was disgusting!! When she got to the tape on my toes, she exclaimed, "Aww, you have such a pretty color of tape (pink)!" (Side note: Dr. Gardner said that I could buy that tape so much cheaper ($1.50 or so as opposed to $4 at a drug store) if I bought it at Tractor Supply - he said it's the same tape they use to tape cows with!! Haha.)

After my foot was out of the boot and the Ace bandage and the tape, I got an X-Ray. The nurse noticed that one of the dissolvable stitches in my toe had not dissolved yet. I noticed it too, because I didn't know what it was at first and tried pulling it out - with no success. ;)

After the X-ray, Dr. Gardner came in. I remembered to bring in the brace that I had made for me years ago but don't actually wear anymore. Dr. Gardner wanted to see it. I told him that I didn't wear the brace anymore because it made it even harder for me to fall. He said, "You're going to have to explain that one to me!" I tried and then he said, "You mean you get hurt worse when you fall while wearing this then if you fell without wearing it?" BINGO. He hit the nail on the head with that one. That's exactly what I meant to say. In the same bag as my brace, I also brought my left shoe. When Dr. Gardner grabbed the bag to get the brace out of it, he discovered the shoe and he turned with a smile on his face and asked, "You think you're getting out of the boot today?" My thinking had been, if I didn't have to wear the boot anymore, I'd need a shoe! But, I was also thinking that if Dr. Gardner wanted to see me in my brace, I would need it. I laughed and quickly responded with, "I brought it in case you needed to see me in the brace." Yeah, that's why I brought it!! ;) He examined the brace and put my foot in it and declared that he could see why I didn't wear it anymore. It doesn't really give me any support and it digs into my skin. NOT COMFORTABLE.

He asked if he could maneuver my foot for a minute. He said, "I know you're going to fight it (involuntarily)." He moved it into a 90 degree position and it felt wonderful. He said that's what his brace would do. That's what the boot is doing now. I also reminded him that I'm still "playing" with the settings on my deep brain stimulation device. He knew this before the surgery. I told him this past week, I've felt more of the dystonia systems return. The first two weeks after surgery were wonderful in the dystonia symptom department - I didn't have any, but I think now that my toes are coming out of being numb, I'm feeling more contractures. My toes don't curl under - because they can't now! - but, the underlying "pulling" is still there. I told him that I had not "played" with the settings in my device since the surgery because I didn't want to mess any of his work up. But there in the office today, I took my remote out and messed with the settings. He wanted to see it and how it worked. So, I showed it to him. And I went from 4.00 volts on setting C DOWN to 2.90 volts (the furthest down I could go). And you know what?! I left it there. It felt good. I told him that it really takes about two weeks to see any dystonia results. Sometimes, I think the system just needs a jolt - you know a big shake up! Haha. If this level gets to be way too little and I'm having major problems, I'll turn it right back up to 4, but (at least for this day and tonight), I'm leaving it at 2.90.

The callous on the bottom of my foot has been acting up again this past week (meaning, it's been hurting really bad!). Dr. Gardner looked at that again and he said, "It needs a little more help again." So he shaved it down some more. I asked why it hurt so bad and he explained it to me, but now I've completely forgotten what he said! But what I do remember him saying is that it is healing, so that's all I really need to remember! He put some topical medication on it along with mole's skin. It'll speed up the recovery. I'm supposed to leave all of that on until tomorrow and then he said that I'll start to see the callous peel away.

Dr. Gardner said everything looked good and healing is what he expected it to look like a month out of surgery, but he's a little concerned about my third toe. He said it's still not doing what it's supposed to do. He then said that he may have to do an "in-office" procedure where he would numb my toe and clip more of the tendon. I wanted it done right then, but he's being more cautious and giving it a little more time to see if it'll straighten out on its own. He said that the swelling has gone down in my foot and toes. I told him I didn't think it had. He said, "Well, you look at it every day. From two weeks ago, it's significantly gone down!" I told him that I've been icing my foot every night. He said that's what's contributed to the decrease in swelling.

I joked with Dr. Gardner that I am probably the only patient he's ever seen that actually doesn't mind wearing the boot. He smiled and said, "I thought you'd like it after you got used to it." It's not that I love making fashion statements with it, or that I love wearing it all the time - it's that it gives me so much support. Yes, I've had some troubles, but over all, it's helping me. However, when Dr. Gardner said he wants me to wear it for at least another two weeks, I had mixed emotions. I'm thankful that it's still going to be there to give me support, but I was hoping to get rid of it at the same time. It's definitely a love/hate relationship. ;) I also have to continue to wrap my toes and ice my foot. BUT - the good news about the ice: I've been icing it for 30 minutes every night and he said I could do it now for 15-20 minutes - yay! He's also giving me a compounded topical medication that I can put all over my foot and toes. It will help in reducing the swelling. Dr. Gardner gave me a new boot to wear at night. I can't wear it out because it has no sole like my other boot, but at night it'll be more comfortable to wear then the heavy boot.

I go back to see him on June 1.

So, the journey continues, one small, rather awkward, step at a time. I get discouraged some times, however God always throws me a lifeline. Today, I was a little sad. I don't even really know why because things are healing and progressing well and Dr. Gardner is pleased. I guess it's the part of my personality that always wants things now and wants them perfect. ;) But, I sent a text to my family telling them how the appointment went and what Dr. Gardner said and their responses instantly put a smile on my face. That's God cheering me up. ;) And - when I think back to a year ago, or 2 years ago or 5 years ago, I can't even tell you how in awe I am of where I am now! God continues to work miracles in my life. He's teaching me and stretching me and loving me. I am in awe of the way He works. When I get discouraged or sad, I just look at what the Lord's already done and is continuing to do in my life and I know....GOD'S GOT THIS!!!

Tuesday, May 16, 2017

Tune-In-Tuesday: May 16

I learned this past week how much my niece, Hope, and I are alike. She just turned one and is "this close" to taking off walking. My sister-in-law was telling me that she walks better on carpet then on hardwood. I do the same! She also told me that when she's distracted, she walks more steps, but once she realizes she is walking, she falls. I do the same!! Haha. So, 36 years may separate us, but we are still alike in some ways. Hope will be running before we know it!

I must admit I had some issues this past week. I think I may have psyched myself out on a couple of occasions, but nonetheless, I had some issues getting into church. Thankfully, both times there was someone there to help. It's weird: I don't like people watching me walk, however, I don't mind and actually want people to walk with me. Once someone is beside me, I feel like I walk better. This has proven true, even with my nieces. If I hold their hand (or they hold mine), I walk fine. I guess it's just enough distraction to get my mind off of walking? Who knows! But I do have many "tricks" that I use to walk.

My foot and toes are healing - I think! They are still swollen, but maybe not as bad. I go back to Dr. Gardner this coming Thursday, so hopefully he'll say they are healing. I've been icing my foot every night for half an hour. My foot still aches, but I assume that's the tendons being stretched and lengthened. I dug my old brace out of the closet to show Dr. Gardner. While I was doing that, I found another brace. I packed it as well, but the more I thought about it the more confused I got. I knew of only one brace that was made for me. Then, it dawned on me. The second brace was not a foot brace at all, but rather the brace they made for my left arm right after the deep brain stimulation surgery when I lost function in that arm for awhile. Needless to say, I'm not bringing that brace to Dr. Gardner!

I've been wearing this boot since April 18. That means I only need to wear one shoe. I kid you not though when I say, almost every time I've gone to get my shoe, I've picked up the left one. All the right ones should be on top of the left ones, right? I mean when I take my shoe off at the end of the day I throw it into the bin, so logically thinking they should all be on top and yet, I grab the left shoe every time. ;)

In my last post, I talked about the tape that I got to tape my two toes together and how there were black, pink and glitter tape to pick from. I had picked the black, but thought afterwards I should have picked the pink. Well, I needn't have worried! I wore through all that tape in a week's time. I had to go by more over the weekend and this time, I got pink!

There have been restless nights where I rip the tape off of my toes and loosen the boot. For whatever reason, my foot decides to ache mostly at night. But this too shall pass.

Today at work, my foot started itching so bad. Of course it itched where I couldn't reach it and I didn't want to have to take the boot off to itch it. It just takes forever to get it off and on again. Yard stick to the rescue! Yep, a yard stick did just the trick.

I continue to get sympathy from the outside world. We went out to eat for Mother's Day on Sunday and this gentleman held the door open for me. He said, "I just hate that you have to wear that!" I didn't know this man, but he was genuinely sympathetic to me having to wear the boot. It also made me realize again that I need to be more kind to people in general because you never know what someone's going through. A simple smile, a wave or door held open could mean the world to someone. Sometimes (OK, most of the time!), I'm so wrapped up in my own little world and my own problems, that I don't extend kindness or grace to people that God puts in my path. I really, really, really want to be kind and compassionate and loving and full of grace. I'm going to consciously try to make other people's days brighter. I want God's love to radiate from me. This is my prayer. God has been so gracious to me, so kind to me, so compassionate to me, so loving to me, how can I not be these things to the people He puts in my path?! Lord, may it be so that I am kind, compassionate, loving and full of grace towards everyone I come in contact with.

Here it is, a year and a few months after deep brain stimulation surgery and are things perfect? No. BUT - things are a million and one times better then they were a year and a few months ago. I still marvel when I realize that I am walking (however slow or awkward it may be at times). I still praise the name of Jesus because He is working in me. This journey's not over yet and just like last week and the week before that and the week before that, I can declare and shout with all my might and know deep down inside, GOD'S GOT THIS!!!!!!!!!!

Tuesday, May 9, 2017

Tune-In-Tuesday: May 9

This past week has been great. I’ve gotten as use to wearing the boot as I’m probably going to get. The “running” comeback (pun intended) has been (when people comment on it) for me to say, “What, you’re not wearing a boot? It’s all the rage right now. It's the fashion statement of the year!” I’ve gotten the, “You know you’re wearing two different shoes, right?” Or the, “Oh, no, what did you do?” Surprisingly (to me), I'm getting around in it better than I thought I would. I've noticed that my foot and toes feel better if I'm standing or walking. They start aching when I sit. I know, that's backwards. I'm weird. ;)

Life has returned to “normal” – if there is such a thing - haha! I’ve gone back to work, to my house, to church. There’s something about routine that I love.

Speaking of routine, new ones are being made. For the time being, instead of waking up early to work-out, now I wake up early to have time to take the boot off and put the boot on. The Velcro on this boot is out-of-this-world strong. While at my parents, I tried getting the Velcro undone with no success. My mom tried with no success. My dad tried with no success. We resorted to using pliers to ply the Velcro off! I’m not even joking! We used them to get leverage and it actually worked! When at Dr. Gardner’s office, his nurse has to use scissors to get leverage. It’s gotten a little easier to take off, since I’m now taking the boot off at least once or twice a day, but the pliers are still used occasionally.

I’ve been icing my foot every night for at least 30 minutes. Let me just say – I have no idea how in the world athletes and others of you take ice baths. Seriously, how in the world do you do it? My leg was literally shaking just from trying to put my foot in ice. I can’t imagine my whole body. I’ve graduated from trying to dunk it in a bucket of ice to just filling a Ziploc bag full of ice and laying it on top of my foot. Some nights are fine, others, I fight to keep it on because it hurts. Last night was one of those nights. It hurt, but I stuck it out. Supposedly the ice is to help the swelling go down, but I haven’t seen any real improvement in that area yet. I know, I know - patience. ;)

After icing my foot the first night, it ached all night. It wasn’t hurting before I iced it, but it did after. The next night, it did the same thing, but not for as long and I was smarter and iced it earlier in the evening, so the aching was done by the time I went to bed. Since then, it’s gotten a little better.

I’m also wrapping two of my toes together. This is supposedly to help the swelling go down in those two toes, but again, no results yet (at least in my opinion). I had to go buy more tape to wrap them in as the tape Dr. Gardner gave me ran out. They had glitter tape. I thought about buying it and then quickly ruled it out. I mean, I don’t want glitter everywhere. That left me the choice between hot pink and black. Somehow, I ended up with the black. I say "somehow" because I really thought I had gotten the hot pink. I had both of them in my hand. But when I got home, it wasn't hot pink that I pulled out. It really doesn't matter because you can't see my toes anyway.

Twice this past week, I’ve been awoken around 2am to my foot and toes aching. I yank the wrap off of the two toes, take the Ace bandage off and open the boot to just let my foot breathe. I purposefully keep myself awake while I have all the bandages off so that I don’t do anything to those toes to undo the work Dr. Gardner did. Once I can stand it again, I bundle them all up, put my foot back in the boot and go back to sleep. One night this past week, I awoke to my foot itching like crazy. I seriously must of have itched it for an hour. I know itching signals healing, but I would have much rather itched at 2pm then 2am.

I think most of my pain (really just aching) comes from the tendon lengtheners. I’m just guessing on this, but that’s the general area where it aches. I’ve noticed that my toes want to curl, but they can’t now – yay! That’s a great thing. I haven't adjusted the settings in my deep brain stimulation device since before the foot/toe surgery. I think I'll wait until I'm fully mobile again to attempt that. Maybe by that time, I won't have to - maybe this setting is "the one". We'll see. Again - patience!

I see the toe doctor (Dr. Gardner) again on May 18. Until then, I'll ice and wrap and unwrap and ice again and wear the boot and try to be patient. I'm not promising anything, but I'll TRY to be patient.

I may be impatient, but God's plan is always on time and always perfect. I must always remember, God's Got This!

Tuesday, May 2, 2017

Tune-In-Tuesday: May 2

Evidently, I still need to learn patience. Patience may be a virtue, it’s just not mine! However, God is determined to see to it that it becomes mine! Why do I fight it so?! If you’ve followed along on this blog for any length of time, you know that I struggle with patience.

I had a return visit to Dr. Gardner today to check on the progress of my toe surgery and get the stitches out. He is now thoroughly immersed in how impatient I am. ;) His last words to me as I was leaving his office were, “Just be patient!” Haha. All went well during the appointment. I can now officially say I’ve had stitches removed. It hurt a little, but I’ve been through worse, so I’m not complaining. My foot and toes still look gross – maybe even worse than last week - because two of them are really swollen. Yesterday, two of my co-workers asked to see pictures of my foot, so I showed them. Evidently, I should have showed the pictures a lot sooner and I would have gotten a lot more sympathy – haha! They were impressed and said it looks like it really hurts.
I was going to put pictures up here on the blog last week, but when I wrote my entry, I was tired and impatient (imagine that!) and didn’t do it. I also thought people may not want to see them! But, this week, I’ve changed my mind and decided to post them. So, if you’re squeamish or just don’t like to see gross feet, here’s your warning.

(This warning is for you, Kristen!)…

This was from last week:

This is from today (before the stitches were taken out – Dr. Gardner walked in on me taking the pic, so I got a little embarrassed).

Like I said, the appointment went really well. Dr. Gardner’s nurse removed the boot and the gauze and the Ace bandage. She commented that wearing the boot has shrunk my ankle. I told her that I couldn’t believe she liked looking at this stuff all day long. She replied with, “the gorier the better!” She’s in the right profession! Dr. Gardner came in and removed the stitches. At first he said he was a little concerned about the swelling, but as the appointment went on and he looked at it more, he said everything looked fine and that the swelling will go down. I do have to wrap those two toes together in those bandages you get after getting blood taken.
He showed me how to make a mock Ace bandage with them.
He said I could get those bandages at any local drug store, but at the end of the appointment he gave me the rest of the roll. ;) I can finally get that foot wet! I asked if I could ever take the boot off and Dr. Gardner asked what I wanted to take it off for. I said, “Well, to take a shower.” His response, “Well, of course.” Then I was about to ask him about taking it off at night and he read my mind. I have to wear it at night. But that’s OK. I have to wear the boot for at least the next two weeks. I see him again on May 18 and maybe then, I’ll graduate. ;) The callouses on the bottom of my feet have been really hurting. He said that the one that’s worse than the other is healing and getting better. He said all the callouses should be gone shortly. He asked how I felt in the boot. I knew what he meant and had to concede that I actually feel a lot steadier in it then in real shoes. That’s exactly what he thought I’d say. This is where I “impressed” him and told him about my ability to walk on sand with absolutely no problems. We may revisit the whole brace thing again. I don’t want to, but he does. At my next appointment, I’m going to bring him the brace that I already have (that I don’t wear because it’s clunky and I can’t fall in it correctly. Seriously, I can’t. I get hurt worse than if I just fell not being in it!), just to show it to him. He said it’s probably not the same thing he wants to put me in. We’ll see where all this leads.

Other than wearing the boot, the only other restriction he’s given me is that I can’t exercise for at least two more weeks. Oh, he said I could do sit-ups or push-ups (core body strengthening), but no (stationary) biking. I told him I didn’t want to do sit-ups or push-ups; those were too hard! ;) All I want to do is bike, but that’s what he told me I couldn’t do. Ugh…so again, patience. I need to learn patience. It was kind of funny, because Dr. Gardner asked if I had any other questions. I thought about that for a second and then said, “When can I exercise again?” Umm…who is this person?! If you had told me 7 or 8 years ago that I would be asking when I could exercise again, I would have called you crazy. But there I was today asking when I could exercise. I think Dr. Gardner was surprised by that question too because he started laughing. Of all the questions, I ask when I can exercise.

One good thing about wearing the boot is, I don’t have to worry about finding two shoes. I told Dr. Gardner that my heel was finally fitting all the way down the in boot. I was proud of myself (because last week, it wasn’t doing that and it was causing problems) until he said, “the boot may be stretching out”. Yeah, that’s more than likely what’s going on. Oh well.

I’ve been working from home (well, my parent’s home) for the past week.

Trying to keep my foot elevated above my heart while working from home was kind of uncomfortable!

While that’s been great, I’m still going a little stir crazy. I don’t remember feeling that way when I had the deep brain stimulation surgery. Maybe that was because I wasn’t feeling so good. But, this time around, I want to get out of the house. For the past two weeks, the only place I’ve gone is to the doctor. The first week was because I wasn’t supposed to walk at all on my foot. The second week was because we were all being very cautious not to do anything to mess up the surgery or the stitches. (I did have one little accident. I was balancing on my good foot and it just crumpled over. I heard things crunch. There’s a big bruise on that foot. I told Dr. Gardner all of this. He looked at it and wasn’t concerned about it and since then, it’s completely healed).
I didn’t even go to church! As much as I’m an introvert, I still need to be around people. I’m thankful that I’m not completely alone – Mom and Dad are here, but I’m ready to get back to work and church. It has been extremely nice though to have been waited on. Mom makes my meals. Dad goes and fetches prescriptions and my mail. That part of it has been awesome!! Don’t get me wrong – I love being in the company of my parents, but I’m also ready to see other people and not just lay around the house.

Someone asked me if I ever turned by deep brain stimulation device back on (after I had to turn it off for surgery). I guess I forgot to mention that I did turn it back on the second I got home from surgery. So, it’s on and working. I haven’t done any other adjusting to the settings though. Talking about that reminds me that my “Vanderbilt” neurologist is now here at UT! I think his first day was yesterday.

This whole deep brain stimulation thing is an on-going journey. (As a side note: thank you to all who still follow along on this journey and still (at least fake) enthusiasm when hearing about it! Also, thank you to all who have sent cards and checked in with me.) Dr. Gardner and I were talking about the journey. It’s amazing what the brain can do. It’s also amazing what the body can do. My foot issue is a direct result of the dystonia. We “fixed” the brain issue (so it’s not perfect, it’s still a thousand times better than it ever was!). And a year later, now we fixed the physical issue. Let’s hope this is all the “fixing” both need! I really hope this is it for surgeries and bionic things, but even if it’s not, I’ll still be OK because I know the Healer of all ailments and I know He’s Got This!