Thursday, March 31, 2016

Back in the Saddle Again

Today was my first day back at work since February 15. It was awesome!! I absolutely LOVE my job and my co-workers. I was completely ready to be back. :)

The reason this post is titled "Back in the Saddle Again" is because I've had this song (the one by Gene Autry) stuck on a loop in my head ALL DAY LONG!!! I don't know where it came from. I haven't heard the song in years and no one used that phrase with me today. But, it is the perfect song for this day! :)

I was greeted with this sign and these flowers:
My co-workers are the best!! Have I said how much I love them?! They made me feel extremely loved and appreciated.

I also got a sweet e-mail from a girl I went to college with who now also works at Scripps welcoming me back and saying she was praying for me. Thank you, Sarah!

I posted this selfie on Facebook with the title, "Let's do this!" and it seems that (as of this moment) 180 people like that I'm back at work too - ha!

I noticed that it looks like you can see the wires running down each side of my neck in this picture. I know it's just the way I was posing, but if they are the wires, the right side would be the shunt wires (the shunt is non-functional now) and the left side would be the wires from the deep brain stimulation device. :)

I wore my "Stephanie" necklace in case anyone forgot my name or if I forgot my own name! :) Thankfully neither of those situations came to fruition!

One of my co-workers told me that my boss wanted everyone to flood my desk with remote controls. I totally would have laughed out loud if that had actually happened! :) I showed a couple of co-workers my new remote control.

I definitely can tell that my hand is not completely back to how it was before surgery, but I'm NOT complaining!!! It is a 1,000 times better then it was and I will never, ever take any part of my body for granted again! I always thought my left hand wasn't as good as my right (since the dystonia hit) but when I lost the use of it completely for awhile, I realized just how much I really use it!! Have you ever stopped to think how blessed you are if you can move your arms and legs, fingers and toes and the rest of your body without ever even thinking about it?!?!?! If you haven't, you should! Thank you, Lord for giving me the ability to move and function without even giving it a second thought!

I don't know if this has to do with the electricity from the DBS system or not, but I did notice today that I feel electricity in my left thumb. It's hard to describe other than using the word "electricity", because that's what it feels like, but maybe pins and needles describes it better?! That's the only difference I'm feeling today and again, I'm not even sure it has anything to do with the DBS system, or if I'm just imagining it because I'm on high alert for any changes in my body. I definitely haven't felt anything different in my leg, foot, toes or in the way I walk.

I did make it through 8 hours of work wearing my wig - yay!! I really did have concerns about that. :) But, the first thing I did when I got home was wip it off. Haha. I also have to say that I feel like my real hair is growing back to look like a mullet! Seriously, it's growing back much quicker and thicker in the back then it is in the front. I do have to take into consideration that hair growth over my incisions is going to take more time, but a mullet?! Really?!! Ha! I saw my shadow in the shower this morning and I could see spiked hair on my head! Yay, it's growing! I didn't think it possible, but I did go through a whole bottle of baby shampoo since February.

Thank you all again for following along on this journey with me, for praying for me, for encouraging me, for sending me cards, for buying me gifts and for loving me. I can't express in words what all of you mean to me. You have completely humbled me and you are a huge blessing to me! God is working in my life in a huge way through this experience. He's changing and molding me in an awesome way and I can't wait to see what's next!

Tuesday, March 29, 2016

(Not Quite Yet) A Bionic Woman

Activate, turn-on, charge-up, plug-in...whatever you want to call it, today was the day that my deep brain stimulation device was turned on. Exactly one month to the day that my last surgery was performed on February 29, March 29 was activation day! :)

The day started early. I woke up at 6am and exercised, then headed over to Mom and Dad's house. Mom and I headed out to Nashville and Vanderbilt. Mom drove for about 45 minutes and then told me she could not wake up, so we pulled over at a rest stop and switched places. I drove the rest of the way to Nashville and she dozed off and on.

We arrived at Vanderbilt with 20 minutes to spare.

Don't worry. I wasn't driving when I took this picture, Mom was. This is actually on our way home.

Mom decided she needed caffeine and was going to go next door to the Dunkin Donuts and get a coffee and said she would meet me in the waiting room at the neurologist's office. After I parked, I sent a text to a co-worker and put on lipstick. And then...I made, by all accounts, a grand entrance into the neurologist's office, thereby solidifying my need to be there. I also just wanted everyone to know I was there! Haha. :) After going through the first automatic door, I didn't hit the "handicap accessible" button on the side of the next door, which wasn't an automatic door unless I pushed the "handicap accessible" button. I thought, I've been opening doors for 11 years now while steering the walker, I can do this! Obviously, I couldn't. ;) I opened the door, but I had a bunch of folders (medical records) and the box with my DBS remote control in it laying on the walker and well, they all just slid off, causing me to run my walker into the side of the door, and then I kind of tripped over my own two feet and well, I made a loud, grand entrance!! The ladies behind the check-in desk asked if I was OK. I just had to laugh and they started laughing too. I mean, it was the ONLY thing I could do. Thankfully there were only 2 other people in the waiting room.

I checked in and then asked if I could use the restroom and promised I wouldn't trip or fall. :) I mention the whole bathroom thing because, as I was washing my hands I noticed a sign next to the mirror that was one of those "please make sure you wash your hands" signs but it listed when you should wash your hands (after you touch a doorknob, after you type on a computer...), but someone had written in "after you touch money". I wanted to take a picture of the sign, but it was at this moment that I realized, I left my cell phone in the car. As I was walking back to the waiting room, I ran into (not literally this time!!) Mom. I went back out to the car and retrieved my phone. It was only a few minutes after I got back in the building that I was called to go back.

I first had to get all my vitals taken. I gained a couple of pounds. This was on purpose and I knew that I had because I had gone to see my nutritionist yesterday. I had lost a total of 5 pounds in February when all the surgeries took place, so I needed to gain some back. :) I got my blood pressure taken (131/69...still high for me on the upper one) and temperature taken and then was led back to the exam room.

The neurologist came in, but it wasn't Dr. T. He introduced himself and asked if I remembered him from the awake surgery. I didn't at first, but after he talked for a minute or so, I did! He was with Dr. T. in the surgery and he was the one asking me all the questions during the surgery. I recognized his voice!! I told him that I have extremely poor eyesight when I don't have my contacts in or glasses on, so I didn't really recognize him by sight (plus he had a mask and surgical cap on during the surgery), but I totally recognized his voice! He was the one asking me to say weird phrases like "the quick, brown fox", asking me to smile, and asking me how I felt. He was the one I told when my hand and arm went numb. So, yes, I DID remember him. His name is Dr. I. He said he was going to activate and program my DBS system and teach me how to use the remote control and then Dr. T. would be in to finish the appointment.

Dr. I. asked if I was having any problems. I told him about the incident I had two weeks ago (to the day) where my hand and arm went weak, tingly, and became heavy. I told him it was almost the same feeling I had right after the surgery. I couldn't move it. He asked if it were a gradual thing. Meaning, did it start in my hand and move to my arm (or vice versa) or did it hit both my arm and hand at the same time. I told him that it hit my hand first and then moved to my arm. I asked if that was a good or bad thing. He said it was good. I told him about the tingly sensation I had right above my left lip and in my left thigh. He explained (as had Dr. K., the neurosurgeon) that the initial spot that they drill into in the brain sometimes gets inflamed and causes those symptoms. He also said that healing from that inflammation is not something that just keeps getting better and better. Sometimes, there is a backslide. All this information made me feel so much better. He wasn't concerned about it. He asked how my hand and arm were doing and I told him much, much better. He did neurological tests (squeeze my fingers, don't let me push your hand down....) and could tell it was much stronger. He made me walk down the hall (with my walker) so he could get a baseline on how I walked before turning on the device.

Then the fun part started! He activated the battery that's under my left collarbone. He did some testing of it. The electrical probe that is in my brain has four notches (or levels) on it. They are labeled as 0-3, with 0 being the deepest point in the brain and 3 being the closest to my skull. I ended up being smack in the middle at a level 2. As he was testing, I had some reactions in my hand where the electricity was "pulling" my fingers together without me doing anything. That level, he said was at 3 (if, I'm remembering correctly...he was talking to Dr. T. when he said this.) The pulling in this case was not good, so he adjusted it. My palms were sweating during all of this and I kept apologizing to Dr. I. I think I was just nervous. I told him I felt like I was about to be electrocuted or something. :) He was totally cool though. He and I started talking about our families. It turns out he is the oldest and has three younger brothers too. One of his brothers is a pharmacist, one is an accountant and one is in medical school. He isn't married (or didn't have a wedding ring on) and was kind of cute. Mom thought he was about my age. ;)

Anyway...back to the actual medical stuff. Dr. I. reminded me once again that I probably won't see any results for another 3-6 months. In fact, after he programmed the device, I told him I didn't feel any different. He said that was normal. After he got it programmed, he taught me how to use the remote control. He set the remote to a 2.00 parameter. Then he showed me how to increase or decrease the parameter. I have to increase the parameter by .10 every week. Only .10!!! I asked if I could go higher and he said no. I have to go slow in increasing it. I begged to go faster, but the answer was the same: no! He said this is for a few reasons: they want to be able to see any progress from one parameter to the next, I could have adverse reactions if I go up too quickly, they want the lowest possible electricity to be able to help me and they won't know the lowest parameter unless they go slowly in increasing it. He had me try to program the remote and I did. He told me that I could keep it at 2.10 (to which I had programmed it), so I was already ahead of the game. Ha! He thought that would make me happy, but I still wanted to go higher! :) But, I guess I'll take what I can get, so I'm starting at 2.10. He had me walk again in the hall with the walker, just to make sure there were no changes (good or bad) and there weren't.

Dr. T. came in after Dr. I. was done. Dr. T. asked me how I was feeling and I told him, I was feeling a thousand times better then when I last saw him (in the hospital right after puking and not being able to move my arm). He asked me if I was having any problems and I told him no after I had the little scare with my hand and arm. I told him that my hand and arm were almost back to normal (I'd say they are 98/99% back to normal.) and he again did neurological tests and was satisfied with my progress. Actually, he said, "Wow, you are strong!". He asked Dr. I. if he had looked at my head incisions. Dr. I. had not. So, Dr. T. asked if he and Dr. I. could take a look at them. This meant, I had to remove my wig, but they had seen me bald before, so I wasn't embarrassed or anything. Plus, my hair is growing!!
One month after the last surgery. Front view.

One month after the last surgery. Back view.

I have to say, one reason I love my Mom coming with me to my doctor appointments and surgeries, she speaks up when I don't! When Dr. T. asked to see my incisions, she spoke up and said that I was supposed to have a wound check with Dr. K.'s nurse practitioner at 2pm, but could we get that done now and not have to come back hours later. Dr. T. agreed with her that it was silly for us to come back at 2pm and went and got the nurse practitioner right there and then. It was Veronica, the one who did my Baclofen pump spinal tap trial and the one who put the screws in my head during the first surgery. It literally took her all of maybe a minute. She said that they were healing wonderfully. I told her (as I had already told Dr. I. and Dr. T.) that the battery under my collar bone was "achy". She asked if I remembered if Dr. K. had put the battery under a muscle or not. I told her that he did. She said that's the reason that it feels achy. She said it could feel like that up to 6 weeks after the surgery because every time I move my arm, it's effecting that. But she said the achiness will go away eventually.

After the neurology appointment, I had to get a CT scan done, just to make sure all the electrodes and probes and batteries are all in the correct place. Dr. T. said that if there were any abnormalities or anything of concern, they would of course call me. I had to wait the longest at the imaging place. They took me right back, but then it seemed like everyone was going before me (even people who were brought back after me). But they had HGTV on the TV, so I just watched it. :) You think I could say I was working while watching it?! I mean, I do work for HGTV!
HGTV in the waiting room.

The scan itself took less than 5 minutes. It's amazing though to me how God works everything out for HIS good. I found out why I had to wait almost 45 minutes to an hour for my scan and it had nothing to do with me. It turns out, Mom struck up a conversation with a guy in the waiting room whose wife was just diagnosed with oral cancer. She had a very good conversation with him and then when his wife came out she had a very good conversation with her. Mom said that near the end of their conversation, she told the lady that she would pray for her. The woman responded with, "You will?!!" She was so happy. Mom said that the couple hadn't been gone 5 minutes, when I came out to the lobby and announced I was done. You can't tell me that God wasn't in that!

After the CT scan, Mom and I walked to Fido's Pet Store, which is actually a restaurant. I kid you not. There used to be a pet store there, but the restaurant owners never changed the name when they bought the building. Mom and I had been there once before with our friend Michelle. This time, when we went there, I made SURE to use the correct restroom. Yes, I'm confessing that the last time we were there, I went into the men's restroom. Not on purpose, but they don't have signs saying "men" or "women". They have a picture of a dog on each door. I found out the embarrassing way last time that I went in the wrong one. It was only after I did that that I noticed on the women's bathroom door the dog is wearing a skirt. So, I redeemed myself this time around. Sheesh! Mom and I split a salad.

This is how the waiters know which table to bring the food to.

After we were done there we crossed the street to get macaroons at our favorite spot, Provence Café. I got raspberry and Mom got peach. The lady behind the counter (to whom I've seen every time I've been there) exclaimed, "I love your hair!" And for the first time, I just smiled and said, "Thank you.", not even bothering to mention that it's a wig. I'll take a compliment wherever I can get it. :) And, I've come to the conclusion that my fake hair is prettier than my real hair. Ha! Actually, I'll be very, very happy if my real hair comes back curly. I miss it! On our walk back to the car (the weather was GORGEOUS!) we browsed little shops.

We got back to Knoxville at 5:30pm (eastern). It was a full day, but a good day!

The next step is for me to go back to work. Ha! Yep, I'm returning to work on Thursday, March 31. Co-workers, prepare yourself!

As for the next step deep brain stimulation related, I have to increase the electricity in the electrodes in my brain by .10 parameters every Tuesday. This is done with my remote control. Then I just have to wait, watch and see if anything happens or improves. I go back to see Dr. I. and Dr. T. on May 3. They will assess and see if I'm progressing any. They may have to go to another spot on the electrode (I'm at 2, there's also a 0, 1 and 3 that I may need to be switched to). Again, they would do this with a magnet. It's non-invasive.

My remote, a holding case for it and the device I use to lay it on my collarbone to adjust it

It's wait and see. If you live locally and see me on a regular basis, you'll still see me with the walker and/or cane for awhile. I want things done before I know I want them done. But (unfortunately for me) this process takes time. I've waited 11 years, I guess I can wait 3-6 months!

I have to admit that I did have one instance of self-doubt today while Mom and I ate lunch. I asked Mom, "What if no level works?" She didn't really have an answer. Later on in the car, I was talking to Dad on the phone. He asked if I was confident that it would work. At first, I said yes, but I said it hesitantly. Haha. Then I said no. But then I conceded that the doctors were confident, so if they are confident, then I will be too. I do have doubts, but I have to put my trust in the Lord. I also have to remind myself that I was very skeptical of Dr. K. when he said that as soon as the inflammation around the surgery site went down, I would get the use of my left arm and hand back. But guess what?! He was right!! I will trust that both the Lord and the doctors know what they are doing. :)

God's Got This - in that, I have NO doubt!!

Tuesday, March 22, 2016

My DBS Process Told in Pictures

The storage on my phone is almost completely filled, so I decided to transfer all my pictures and video to a jump drive. In the process of doing that, I realized I had a ton of pictures from my deep brain stimulation adventure that I hadn't shared. There is a reason that I didn't share them - some of them are the most unflattering pictures of my life!!! But then again, the process of deep brain stimulation, the hospital, having three surgeries in three weeks and recovering from everything is the farthest thing from flattering. I tried not to repeat any pictures that I had already shared in other posts. I decided early on in blogging about everything that I would document the good, the bad and the ugly. So, believe me when I say that some of the pictures in this post are most definitely the ugly! Ha. :) Here you go...enjoy!

The wig I ended up with.

One of the last pictures with my own hair - Ash Wednesday
This was at my sister-in-law's baby shower 3 days before my first surgery. This is a figurine the hostess had of a surgeon (her husband is a doctor.) I thought it appropriate!
I thought I'd never share this, but what the heck! It is what it is. :) Clean shaven and ready for surgery. This was Valentine's day.

This is the scar I already had from the shunt surgery back in 2008.

Two days before surgery, I fell 3 times in 1 night and this was the aftermath.

On the way to Vandy. No contacts, no make-up, no hair and I don't really care!

The aftermath of surgery #1: screw placement
The aftermath of surgery #1: screw placement
The aftermath of surgery #1: screw placement
I especially like the "We will wake you up." part!
The BIG surgery

Reading "the rules"
View from my pre-op bed...let's get this party started already!
Found this group text on my phone that my mom had sent a few friends.

The damage done after surgery #2
The WORST picture of me, but the surgeon warned that the swelling would descend and descend it did!

Flowers from my grandmother

Can I get an Amen?
Mom and I each took a friend (to say thank you!)  to see this play. I took Kristen who's been a wonderful friend through this DBS process.
The aftermath of the 3rd surgery. That's NOT swollen. That's how big the battery is. It gets activated March 29.
Time for a haircut?! Ha!

Wednesday, March 16, 2016

A Little Scare and Phantom Hair

Yesterday sure threw me for a loop. I woke up and headed to an 8:30am appointment (not deep brain stimulation related). Afterwards I decided to stop by Target to pick up a few things. While in Target, I had a little incident. My left arm and hand (the arm and hand effected by the surgery) started to get heavy and tingly. It started feeling exactly like it did right after the surgery. Then it went numb and prickly feeling, like it was asleep. Then I felt those same sensations in my upper left thigh and above my lip on the left side of my face. I've watched way too many medical shows to immediately think I may be having a stroke. But, I wasn't confused. I could talk normally, stick my tongue out, my smile wasn't crooked and my eyes and face weren't droopy. The whole incident was over in a matter of minutes. I paid for my items and then drove to another store. I made a purchase there and left. Then I decided to call my mom and tell her what happened. She said I should call Vanderbilt right away. I was hesitant at first because, as I told my mom, they'll just tell me to go to the ER because what could they do for me 2 and 1/2 hours away? But Mom said they needed to know, so I called them. And guess what?! Dr. K's nurse told me I should go to the ER just to be on the safe side. She said that they could do a CT scan and check. I did NOT want to go to the ER. My symptoms had resolved themselves. So, I debated for awhile. Then Mom said maybe I could call my internists' office and see if he could order a CT for me. So I called him and it turns out that he's out of the country this week, but his office told me that if he was here he would tell me to go to the ER. So I debated some more. I know, I know. I should have just gone, but there were a few reasons I didn't want to go. Then I decided to call my ER Doctor brother. I left him a message. I was feeling great by this time, so I decided to head to Walgreens to get a Tdap shot. My new niece is almost here and her parents asked us family to get the shot. I was at Walgreens when my brother called me back. He said that as a doctor he would tell me to go to the ER, but he also understood why I didn't want to go. He said nothing could be diagnosed without a scan. I promised him that if I had another incident I would head straight to the ER. While he was on the phone, I asked him if getting the Tdap shot would effect anything that may be going on with me neurologically. He said no and that it was fine to get it. So, I got the shot and then ran errands. I got home and felt well enough to exercise on the bike. Dr. K's nurse called me back to see how I was/what was going on. I confessed that I didn't go to the ER. She said since I didn't want to go to the ER, I should call my local neurologist and try to get in to see him. She asked me to call her and let her know if I got an appointment. I told her I would. I called Dr. L. It turns out he's also not in the office this week. It's definitely Spring Break around here. :) I called Dr. K's nurse and told her this. Then I started doubting myself and told her maybe I should just go to the ER. She asked what symptoms I had and I told her none. It was just that one time earlier in the day when I had the symptoms. I told her that on one hand I didn't want to go to the ER because I didn't want to waste anyone's time if it turned out to be nothing. I didn't want to have to go through the whole DBS story, I didn't want to wait hours and hours to be seen, and I didn't want to spend a ton of money when I already had follow up appointments and a CT scan scheduled at Vanderbilt on March 29. I know these are stupid reasons, but I'm being truthful. :) On the other hand, if it was something, I didn't want to cause permanent damage to myself and I certainly didn't want to die. So, we came up with a middle of the road decision: if any of the symptoms came back, I would head straight to the ER and I would stay with someone (or someone would stay with me) overnight. I was happy with those decisions. So, I spent the night with my parents. They were adamant that if I started having any of the symptoms again we would be heading right to the ER. Both Mom and Dad thought that I either had a mini stroke or more likely a TIA (transient ischemic attack). We looked both up on Dr. Google (because you know that's what you're supposed to do - NOT!). And, yeah it sounds a little like that. Anyway, I know I'll probably get a lot of flack from people telling me I should have gone to the ER. And you know what? I probably should of. What's that phrase? "Do what I say and not what I do". Yeah. As much as this may surprise people, I don't actually like going to doctors. I love watching doctor shows, that's it. :) However, I'm pleased to tell you that I didn't have anymore incidents. My arm and hand is not as bad as it was right after surgery, but not as good as it had gotten before yesterday's incident. So, something may have happened, but it'll show on the March 29th scan and it's more likely nothing could have been done about it. In the meantime, it's back to exercising with the balls again.

On an entirely different subject, yet still related to deep brain stimulation, I think I'm suffering from "Phantom Hair Syndrome". It's not a real syndrome (I don't think!), but something I made up. I use it to describe what I'm going through. I completely think I still have long hair. I'll whip my head to the side thinking I need to get my hair out of the way. I still think I need as much shampoo as I used to. When I lay down on the couch or in a recliner, I think to myself, "Oh, you're going to mess up your hair and you have somewhere to go later." Only to be brought back to the reality that I don't have hair to whip to the side, I don't need nearly as much shampoo and I'm not going to mess my hair up! The other day I was cold. I thought to myself that I just needed to take my hair down from a poney tail only to realize, I have no hair to take down!! :) While I was staying with my parents, my mom came home one day and she had gotten her hair cut. I told her I had too that day, but the stylist was a beginner and made a mistake, so she just had to buzz my whole head! On another occasion, I had just gotten out of the shower and came into the living room where Mom exclaimed, "You forgot to blow dry your hair!" Dad says I look like I'm ready for the military now. I also almost forget to put the wig on sometimes before leaving the house. When I moved back home from staying with my parents, I drove to the end of their street, before realizing I forgot my wig at their house. :) There have definitely been funny moments involving my lack of hair and the wig and for that, I'm very thankful!

That's it for today. I'm posting this, even though I'm scared I'll get backlash that I didn't go to the ER. ;) I still covet your prayers. I would especially like prayers that I don't have anymore incidents and that my arm and hand function is completely restored by Monday. That's when I'm going to try to go back to work, but then again, April 1st is sounding better and better after what happened yesterday. Only God knows and time will tell!

Saturday, March 12, 2016

The In-Between Time

I haven't updated the blog since the day after my last surgery, so I thought it was time to do so. I've titled this post "The In-Between Time" because that's exactly what it is. It's in-between surgeries and getting the device turned on and going back to work. This might sound kind of strange, but I really can't wait to get back to work. I seriously love my job and love the people I work with. I miss both terribly! However, I know it's still not time to go back. I hoped to go back on March 16, however, my hand is still not 100%. Although it's much improved, to have to type for 8 hours - well, I can't do it yet. My new goal is going to be March 21. The surgeon (and my insurance company and work) approved me to go back on April 1, but I like doing things early, so I'll shoot for March 21. :)

Here's what's been going on in the in-between:

While staying at my parents, I got to take advantage of their handicap accessible shower. They had it installed because as they say, they're getting older and they may need it some day. It was wonderful to have and use! Thank you, Mom and Dad.

Every night Mom would wrap my hand up in the splint that I was given.

Friday, March 4 was the first time I put on real clothes (not pajamas!) and makeup since my surgeries. My friend, Kristen came and visited with me. I left my wig off, but she was cool with it. She said I had a nicely shaped head. It was so great to visit with her. She and I can commiserate together because she's had brain surgery too. She doesn't have the same condition that I do and her surgery was done through her nose, so she didn't have to lose her hair (no fair!), but she knows about brain surgery and recovering from it. She brought presents too!
She also gave me this because I posted on Facebook that I had eaten peach oatmeal and it was better than filet minion. :)

I made my first public appearance (except to drive back and forth to Vanderbilt) on Saturday, March 5. The occasion was The Parade of Tables event at church. I'll tell you, it was exhausting, but fun! I showed off my wig and it was great to get out of the house. I made my Sunday church debut the next day. Let me tell you, I had been CRAVING church. I missed it so much. The people of my church are the best and I couldn't wait to see and worship the Lord with all of them.

Monday, March 7 I drove for the first time. It was only from my parent's house to my house (which is only 1.2 miles), but I drove! I drove to my house because not only was I craving to go to church, I was also CRAVING exercise. I didn't have any restrictions on exercising, but I didn't feel up to it until then. It was exactly 2 weeks since my last work-out. Some might be surprised that I do actually exercise, but, alas, it's true - I do! I ride a stationary bike. I remember a former co-worker (upon learning that I work-out) saying to me that she now had no excuse not to work out. If I could do it, so could she. That was an incredible compliment to me and it's stuck with me. Thank you, Liz! So, I worked out and it was by no means my best, but it was still wonderful! Those endorphins are awesome! I drove back to my parent's house afterwards. After I got back to their house, my niece, "Little G", came over. She ran into the house holding a gift bag. I thought it was for Mom, but she flew right past Mom and handed it to me. This is the sweet present and card she gave me:
I love that girl! After she left, I spent one more night with my parents. They have been amazing throughout this whole experience and I thank God for them!

Tuesday, March 8 I had an eye appointment and another doctor's appointment. Mom offered to drive, since I didn't know if I'd be able to see to get to my next appointment. It turns out this is the one time my eye doctor didn't dilate my eyes! Thankfully, my eyes didn't change from last year's check-up. One interesting fact is that without my contacts in or glasses on, my left eye is better than my right eye, but once my contacts are in (or glasses on), my right eye is better than my left. I'm not even going to begin to figure that one out! I spent a fun afternoon with Mom shopping. Dad moved all my suitcases and presents to my house and I spent the night for the first time at my house.

Wednesday, March 9 I went to the dentist. I wasn't supposed to go until March 23, but I figured since I was off of work on medical leave, I'd see if I could get in earlier and it turned out, I could. The report was no cavities! After the dentist, I went to see my nutritionist. It was there that I learned that in the past month I had lost 5 pounds. Oops. I blame it on the throwing up I did. :) After meeting with her, I came home to get my Internet installed. Yes, after 13 months of not having cable and Internet access at the house, I decided to sign up for Internet again. There was no reason that I got rid of cable and the Internet except for the fact that the price I was paying for both was ridiculous and I was fed up with it! I saved a chunk of change by getting rid of it for a year and I don't regret it at all. But, I missed not having the Internet or wifi and I got a great introductory rate, so I have Internet and wifi access again at the house and it's AWESOME!!! I still am without cable. I realized that I don't watch many shows that aren't on network TV, so I'm completely fine just using an antenna. Now that I have Internet access, I can watch stuff online too.

Since the surgery(s), I've found out that I can not wear a seatbelt (on the driver's side) without it irritating me. The battery pace-maker-like device, is right there under my collar bone and the seat belt hits right where it is. I've been told though that this does get better. Right now, my incision is still healing and that's why it's uncomfortable. I've also noticed that even though Dr. K. said he would try to hide the device under a muscle, it still protrudes a lot. I can't tell you if I'm self-conscious about that or not yet because I haven't made up my mind! I've noticed that several of my shirts don't quite come up far enough to NOT show my incision or the Band-Aid I have over it to cushion it from rubbing up against my clothes, but I think once it heals, I won't be so embarrassed by it. I'd rather have that and be able to walk without assistance, then not have it and have to walk with a walker or a cane. I can't really sleep on my left side either because of the battery and also because of the incisions in my head. It's still too uncomfortable, but I know too that this will eventually go away. My hand is getting better. It's still not 100% back to normal, but it's 1,000 times better than what it was. I was scared out of my mind that I would never regain function of it, but literally from one day to the next it made massive improvements! I can now grip, move my hand and fingers, open and close my hand. Not everything is automatic again though. I am constantly dropping things. Just today, I dropped my car keys twice. I also dropped paperwork and cards on my way to put them away in my home office.

I have been blessed with so many (very thoughtful) gifts.

My grandmother bought me my favorite flowers.:

After my first surgery, Mom bought me this scarf which I love!!:

Dad put me in the bulletin (because after all, he's the pastor and can do that!):

My friends Carrie and Brennan gave me 5 different sized and different textured balls because they heard that squeezing, holding, rolling balls in my hand were great therapy. They also gave me "round" candy to go with the round balls! I love it, but more than I love the gift, I love them. Thank you for being so thoughtful!!

This is me working with 4 of the balls.:

I got this present in the mail from a couple at church. Thank you, Joe and Nancy!:

My friend, Cai, from church gave me a wonderful gift. She made me the hat! She knows I love camels. She said she gave me the lipstick to cheer me up on down days and she asked what I was craving. When I said anything spicy, she delivered!:
As you can see, I've already dived into the spicy Cheetos. :)

I also got Russell Stover chocolates from church friends Bob and Gail, but I left the tin at Mom and Dad's so I didn't get a picture of it. Believe me though, they were good chocolates! :)

I also have gotten cards too numerous to count. OK, that's not entirely true - I could count them, but take my word - there are a lot. Each one meant so much to me. Thank you, thank you to those who sent them!

Thank you to everyone who has and is continuing to walk this journey with me. I've been overwhelmed with love and I can't say thank you enough. The next step is March 29, when I go back to Vanderbilt to have the device turned on. I'll also get a CT scan of my brain and I have a follow-up surgery appointment so they can make sure all my incisions are healing properly. Oh and I almost forgot - my hair is growing back fast!!! Yay! :)

Tuesday, March 1, 2016

3 Down and Now Done (With Surgeries)

I am so incredibly happy to be over the surgery parts of this deep brain stimulation process! I had my 3rd and final surgery yesterday, February 29, 2016. It's not lost on me that this was Leap Day - you can't tell me God doesn't have a sense of humor!!!

I have to confess though that I was growing weary. I had a good cry Sunday night after I was in bed. I was getting discouraged because of my hand. I had gone into these surgeries confident of what I was doing and when the unexpected happened (the weakness in my left hand), I grew discouraged and fearful that I had made the wrong decision. I mean, I could live with having to walk with a walker, but now my hand? It was a little too much. I didn't really even have the energy or (if I'm being completely honest) the desire to pray about it. I was doubting all my decisions.

Monday morning I was melancholy and not as chipper as I had been for the first two surgeries. Dad said a prayer with me and Mom before Mom and I left for Nashville. He asked that I would be more encouraged coming home and that everything would go well. Then Mom and I were off. It was a quiet ride to Nashville. I was not as sure of myself this time. I got some texts from friends and those cheered me up. But as much as those cheered me up, it was still hard for me to be happy. I got 2 calls from my insurance company. One was an automated call saying they didn't have all the paperwork for my claim yet. Well, there wasn't anything I could do about that. I had submitted all the forms I was supposed to and as Mom commented, "your surgeries aren't even over with yet!" The second was from a real person who was asking how I was doing. I managed to hide my discouragement.

We got to Vanderbilt early this time, but by the time we got inside we were a little late. It didn't matter though because we still had to wait. Finally Mom and I were taken to a holding room. I had to get changed into a lovely Bair hugger gown again. I almost got out of wearing the yellow "fall risk" socks, but I opened my big mouth! The socks they had for me were gray. I said, "Oh wow, I don't have to wear the bright yellow ones anymore!" And then the guy who brought be back to the room said, "Oh, I guess we should follow protocol. I'll go get the yellow ones." While he was getting them, I had to once again prove I was not pregnant. I gave him what he wanted and guess what?! I'm NOT pregnant! I'm so glad we got that cleared up. ;)

Not my finest hour, but somehow I still managed a smile. :)

They took my temperature and I was freezing. I knew I was cold, but not 95 or 96 degrees cold! I had to get warm under the Bair hugger. I'm telling you, after I lost all my weight a few years ago, I became cold natured. Now losing my hair too, I'm super cold natured!!! After I got warm, my nurse, Alice, came in. She was very interested in my case. She asked me what dystonia did to me. Come to find out her 25-year-old daughter is having medical issues that doctors have been unable to diagnosis yet and some of her symptoms are like mine.

One thing I learned, if a nurse asks you if they can put an IV in your hand, you should emphatically say NO!!! Alice tried to put one in my hand and it was the most painful thing ever. I guess my vein rolled too and that didn't help. There was blood everywhere.

She finally gave up on it. I really thought I was going to faint. I have no problems looking at my IV's once they are already in me, but getting them in, I always, always have to look away. She then decided to try and get one in my left arm and that IV I didn't even feel going in! Praise Jesus!

Once the IV was in, I just had to wait until Dr. K. was done with the patient in front of me. This is when I started thinking about things again. I asked Mom if it was weird that I was more scared about this surgery where I would be asleep under general anesthesia then I was about the actual deep brain stimulation surgery where I was awake. She wanted to know why. It was because of the general anesthesia. I have this fear that I'll never wake up from it. I know it's a dumb fear, but it's a fear nonetheless. To pass the time, I took a picture of my view.

For my co-workers and those that know me really well, you know how easy a song gets stuck in my head. Well that was a God-send because I had all of these hymns and Christian songs rolling around in my head. That brought me great comfort.

A funny thing I overhead when I was in the holding room was someone in the hall said, "Does she need Dr. Pepper? Dr. Pepper, right?" My first thought was that someone had come out of surgery and could now have something to eat and drink and was asking for a Dr. Pepper. But then it became abundantly clear that there was an actual doctor there with the last name of Pepper. This made me laugh so hard!!

Dr. K. came in and spoke with me and Mom before the surgery. Oh how I love this doctor. He's kind and compassionate. He's smart and confident. He knows what he is doing. He asked how the week had gone. I told him I puked again a couple of days after coming home and just had to deal with nausea. He was so sorry that I had felt that way. He checked my hand and said that it was doing great. I was (and am) able to do more with it now than initially. He wrote a script for physical therapy, but said that within 2-3 weeks it should be back close to normal. He told Mom and me that I should get a Chinese rolling ball. He said if he had anymore, he would just give me one, but he had run out. He said that by me rolling it in my hand, it would help to get function back in my hand. Mom later told me that when I was in recovery, Dr. K. came out to tell her how everything went and he actually brought his iPad out and got on Amazon and showed Mom what he was talking about in regards to the Chinese rolling ball. What kind of surgeon does that?!! The kind that's compassionate. I don't know if Dr. K. is a Christian, but I'd like to think he is. He shows Jesus in everything he does. Even if I don't get the Chinese rolling ball, he said a tennis ball or any other small ball or stress reliever ball would do. I just need something that I can roll around in my hand to regain function of it.
This will do for now!

I asked when I could drive. Dr. K. said next week. I guess that also depends on how my hand is doing. I asked when I could go back to work. He initially said next week, but then changed it to April 1. This is only because of my hand issue. Although I'm typing this blog with one hand, I think it would be extremely hard to work a full day and only have use of one hand. (Side note - Dad was home for lunch when I was typing some of this and he said, "You type faster with one hand than I do with two!") Dr. K. filled out my "Return to Work" document with the date of April 1, 2016 as my return. He said that if my hand was better before that, just to call him and he would change the date on that paperwork. I was originally hoping to go back to work on March 16. That may still happen. I'll just have to see. So, if any of my co-workers (or bosses) are reading this post - I'm sorry that I may be out longer than I had initially expected!! Dr. K. marked me up for surgery and said that there would be two more incisions in my skull and one right under my collarbone. I asked if I would have to lose my hair again. He said he didn't think so, or not much of it anyway.

Dr. K.'s right-hand nurse, Cheri (or is it Sherry? I accidentally called her Sheila in my last post!) came in after Dr. K. and said hi. She said I shouldn't eat any cheeseburgers, fatty foods or spicy food that day after the surgery. It's ironic that she mention that because in the past week all I've wanted to eat is spicy food!! The Medtronic guy came in after Cheri and introduced himself. He said he was in my last surgery, but I didn't remember him. Medtronic is the company that makes the DBS device. The Medtronic guy's name is Peyton, so I of course had to ask if he was from Tennessee and if he was Peyton Manning's age or if he was named after him. He said he was a few years older than Peyton Manning and that he's actually from Texas. Peyton was his grandmother's maiden name and that's how he got his name. He said he's lived in Tennessee now for 20+ years and when he first moved here, Peyton was in his heyday at the University of Tennessee. He had NO idea how popular his name was here in TN. :) He answered questions Mom and I had and told Mom he would bring my remote control out to her while I was recovering.
It won't work until March 29, when I go back to Vanderbilt to have it turned on after I've healed from the surgeries. This surgery was to implant the pace-maker like battery under my collar bone and hook up all the wires from it to the ones connected to the device in my brain. After Peyton left, the anesthesiologist came in and talked with me and then it was time for the surgery. Members from the anesthesiology team gave me a "cocktail" of drugs to take the edge off. As I was being rolled into the OR, I saw Dr. K. sitting on a gurney just waiting for me. I do remember getting over onto the operating table, but then I was out. Next thing I knew I was waking up in the recovery room. The anesthesiology team kept their promise:

Mom came back and sat with me. And she took a picture (because I asked her to) of my newest battle wounds.:

For some reason my heart rate was high, so the recovery room nurse was monitoring that, but I did get to eat saltines with peanut butter on them and drink water. They also gave me a nausea patch (thanks to Dr. K.!). Finally, my heart rate went down and they said I could leave. Mom and I left Vanderbilt around 4:15pm Central time.

The ride home went well. My mom called our family friend, Doris, and put her on speaker, so I talked with her a little bit. I don't know what kind of anesthesia they gave me, but after a half-hour or so in the car, I was wide awake, not feeling hung-over or sleepy. I started listing all the things I wanted to eat when I got home. They kept changing. First it was cereal. Then it was ice cream. Then it was eggs and toast. Mom eventually said I could have them all. She said it was a good thing I had an appetite. It meant I wasn't sick. We got home at 8pm EST. And I ate! I did have cereal (Cinnamon Toast Crunch) with almond milk. I had a banana popsicle and peach oatmeal. Again, I don't know what kind of medicine they gave me at the hospital, but I was WIRED when I got home (well, Mom and Dad's home!). Long after Mom and Dad had gone to bed (and Mom didn't go to bed until around midnight), I was still wide-awake. I ended up listening online to the sermon my dad gave a couple of weeks ago that I missed. It was awesome (as usual) and all about fear. After listening to that, I was still wide-awake, but eventually fell asleep sometime after 2am.

Mom counted and I now have 9 incisions. My head looks like a roadmap and I have no hair (they did shave a little more off this last time, but not my whole head, so now I REALLY look ridiculous!). BUT...every scar tells a story and if I have to lose my hair to gain my walking, I'd do it a million times over!

Now, the waiting and the healing begin. I like to think of it as the surgeries were Dr. K.'s "hard" part. The recovery is now my "hard" part. I'm very, very impatient with these things! First, I have to wait until all my incisions heal and the pain goes away. Then I have to wait until March 29 to get the device turned on. Then I have to wait to see at which level of stimulation will work best for me. Dr. T. (the Vandy neurologist) reminded me that, unlike in Parkinson's patients, dystonia patients don't see immediate results. It's a process. I also now have to wait for my hand to heal. I have to laugh, because the faster I want to go, I get hit with scenarios in which God seems to be saying to me, "Slow down, my child, in MY time all things will happen for your good."