Saturday, December 27, 2014

Coming Back on Christmas Eve

Knowing that I am going to my first Christmas at my boyfriend's parents' house with 30 family members there, I know I am in for another social gathering. I reflected on the previous one from mid December with friends and some nerves came over me occasionally before going, but I know with this group I can be comfortable. Everyone there will already know about my surgery experience and some post surgery happenings during recovery. They are family, they keep in touch, they are aware. I also know they are a group that likes to enjoy themselves and have fun, not focusing on the negative things.

I was told a couple things from my boyfriend about how Christmas goes with his family. I heard that Santa comes and hands out joking, and at times inappropriate gifts, to everyone there. He warned me to not get offended by anything Santa gives me. Is it pathetic that I was super excited for this? I feel there is no chance at this point of me being offended with a sense of humor. I am constantly looking for something to make me smile or laugh. I couldn't wait. 

I was also told another tradition. Before eating dinner, the newest guest must say grace. I was the newest guest and never had I ever said grace. I got so nervous hearing this that I was about to throw up. 

I don't know how to say grace and the whole family is going to be there watching me take the lead was the idea that I had running through my head. What did I do? Google it, duh! "How to say grace at Christmas dinner?" I browsed through a few and literally started getting nauseous. I then got a message from my boyfriend's best friend telling me that he had to give grace their and his tip was to give Grandpa a kiss on the hand after because it shows respect in the Italian culture. Definitely thought he was joking with me. I then started getting comments from all the cousins telling me, "good luck on grace," or, "don't forget to kiss Grandpa's hand!" I started believing this was true with everyone explaining it to me. I needed a plan, and I created one.

At the gathering, there were quite a lot of people there. My family's usual Christmas consists of my parents and siblings- tiny. This was a crowded affair. I flashed back to the past gathering of friends and my lack of comfort, reminded myself that it is time to be me again, and joined in immediately to a game with the cousins. I was really feeling comfortable and was enjoying myself interacting with everyone. The cousins kept telling me about grace and the joke of me doing it spread to the older adults. 

Dinner came out. My boyfriend's mother tried to rescue me and make him do grace instead of me. Little did they all know, I had a joking plan to turn around on them. 

"I'll do grace tonight," I said. "As you all know, I had a piece of my brain removed so my memory on how to do grace is a bit forgotten." I got some laughs and a sarcastic, "not a good enough excuse!" making me smile. I continued, "For grace tonight I wanted to make it special for Grandpa, so I'd like to say it in Italian for him." (I had spent all day learning and practicing the words that translated to "bless this lovely family, delicious food, and wonderful Christmas" that I attempted as best as I remembered for all 30 people there.) I then kissed Grandpa's hand as everyone told me to. Whether it was the truth or a joke, I wasn't sure, but I did it to make everyone smile- including Grandpa! He gave me a hug, told me he loved me and started bawling. I couldn't stop smiling. 

I was back to myself and fit in with the crowd well. I felt more confident, happy, and free of fears, ready to be social again. 

And in case you were wondering what Santa brought me: A construction helmet (must keep my brain safe), staples and a staple remover (never know when I'll need to close my head up again) and an "Alcoholics Anonymous" book (haven't had a sip since September, so I must have quit drinking for a real reason...). Sounds like Christmas!

Friday, December 26, 2014

Pre-Holiday Happenings

Christmas Eve and Christmas Day were great this year. I'm so happy that my headache went down enough that a Tylenol was not a requirement and my jaw (which muscle was broken in surgery) could open up wide enough to stuff all the amazing food inside my mouth without trouble. On Eve at my boyfriend's parents' house there was a big crowd there but I really felt more like myself. It made me notice big time the difference between that gathering and the first rather large social gathering I went to two weeks ago in mid December.

The first gathering in mid December I went to was a group of friends meeting up at our friends' house for dinner, secret Santa, games, catching up, and for most people, drinking. I was very excited to go. I have received a lot of support from them checking in on me since the first surgery and sending me nice gifts, so I was happy to see them to show how much better I'm doing. At the same time though, I didn't want to talk about surgery all night. I wish I could've walked in, stood on a chair, got everyone's attention and said, "Can I have your attention please!" and explain all about my recovery from surgery so far and how I am doing so everyone knows. After my speech, I wouldn't want to talk about my strange head for the rest of the night. Unfortunately, my genius idea of that did not come to mind during the party. When I was talking, catching up with friends I was before anything asked questions about how I am feeling, how things went, was the surgery successful, are you done with seizures, and many more. This just brought back emotions for me.

I consider myself very positive when it comes to what I've been through and how it is affecting me, but at times I unfortunately have a very hard time controlling my emotions. Sometimes I'll just start crying and I have nothing that I am upset at, and if I do seem to get a bit upset because something tickled my mood or emotions, I'll ball my eyes out.

At the gathering, I was a bit intimidated about initiating conversation. I decided to join in with the game Cards Against Humanity so I could turn to some laughter and fun. I really enjoyed myself playing the game. People decided to pause the game to socialize and eat. When I found myself sitting on the couch without anyone next to me and most people with a drink in their hand laughing, joking around, or making plans for the following time getting together, I got a lump in my throat. I wish I knew the face I was making because my boyfriend came over and asked if I was ok. I told him I was fine. I wanted him to enjoy himself, he's been looking forward to this since the last year's secret Santa. I felt like I was about to have tears pouring out. I clenched my jaw and kept down the tears. I went up with him to get food, and felt calmer having him next to me with normal conversation. When it was time for secret Santa, I was in charge of passing Santa the presents. I was glad I had a role. I felt included in the fun. Some people had been drinking a bit too much and with them pulling ridiculous acts, while most found it humorous, it was beyond my sense of humor. I almost found it irritating in a way.

My turn to get a gift, and I threw on a smile. Most people got funny gifts that had to do with their personality or inside joke. I was hoping for a gift making light of my situation. Something I could laugh at. How about a wig for my half missing hair? Maybe a dictionary in case I forget a word? Even better, some instant mashed potatoes so I can have it for breakfast, lunch and dinner with my sore jaw? I was ready for someone to pitch in to help me make light of this situation and let loose. I opened my gift and inside was some nice Packers fan gifts- pens, cup holder, stickers, etc. She thought I was sensitive and wanted to get me something she knows I'd like. I smiled, put on some excitement for my Packers gear, and gave her a big thank you for my gift because she knows I am a big fan.

My boyfriend asked if I was ready to go, I agreed. In the car ride to meet my parents to take me home he asked me if I had a good time. I clenched my jaw again and gulped down the tears. I explained that some parts were fun like playing cards, but I wasn't  myself the whole time. I said I didn't like constantly talking about the surgery and pain I went through. All I wanted to do was have normal fun conversation with friends. I wanted to know everyone's Christmas plans or if they got stuck in the snow the other day, or how work is going. The times I was talking it was about my brain. The times I was sitting alone, I got emotional because all I was thinking about was surgery and the negatives I went through. I held in my tears because I wanted to be happy that I went out to be social. I was happy I went out. It was the first time in 4 weeks. It was a big step. I got home to my parents' house, went upstairs, and cried until I quickly fell asleep.

I was not myself. I felt nervous thinking of being social again in the near future. I don't want others to worry about me. Why am I crying? Why was I about to cry at the party?! I lost myself for the night. I needed to find myself again hoping it was just an off night. Christmas Eve, now that was a night I was back to myself. Off nights are possible, but I was only looking forward to when I was able to be myself and be social with people I miss.

Sunday, December 21, 2014

Daily Update

2 days in a row seizure free, I'm thrilled heading towards the holidays. A couple days ago my doctor called me and told me she heard about my "strange happenings," as I've been calling them, since post surgery and the RNS being turned on. Unexpected seizure activity involving some memory loss, falling asleep, and incoherence has been coming on here and there.

When my doctor called me she told me my RNS is on minimal power to start and generally they do not adjust it for at least a month. I had gotten mine turned on 3 weeks ago. She told me she wants me to get rid of all this seizure activity, especially around the holidays. She requested that I increased my Lamictal amount by 25mg each day. There seemed to have been a bit of disagreement behind the scenes of the team as some did not want to increase any medicine post surgery. My surgeon told me that my doctor is the "Drug Queen," knowledgeable about medicine like no other in the team. How could I disagree with her recommendations to solve my problem? I can get these 9 pills decreased possibly in the future once this RNS is doing the trick.

I was also told on the phone that my lead RNS doctor has agreed to let me come in before my main appointment in January if I'd like to get the frequency increased before the holidays come. My mind was a bit unsure. I've had some strange things happening, but I do not know if my RNS has had any part in creating these events. First of all- going against all previous patients' tweaks happening after a full month makes me a bit timid. This very new high technology is still under close studying, trying something new worries me some this time around. Generally speaking, I am a risk taker. Someone has got to try something new, and I don't mind if it's me. It could help me and many others in the future if it is successful. All I could think about is Christmas coming. What if something unexpected and more extreme were to distract everyone from the holiday spirit?

After that brief thought running through my head, I told my doctor, "let's try the increase in medicine and see if it reduces my seizures. If so, I'd like to hold off until my January 6th appointment to adjust the RNS. If strange things continue to occur, I'd like to hold off until after Christmas, and perhaps I can come in shortly after before my appointment if necessary." My doctor approved of my decision and we agreed to keep in touch frequently. I'm glad I stuck with my decision. This is a time for family and celebration, not a time to panic for what may happen. Stay positive, and move on. Luckily, after day 2, it has been a success.

Today was so relaxing. Not only was it day 2 of no seizures, but 3 days of no Tylenol for my endless post surgery headache. My relaxing consisted of watching football from 12 to bedtime... horrible choice staring at a tv for over 10 hours with sensitive head pain. I splurged for a couple pain killers to continue being completely lazy and continuing to stare at the tv. Destroyed my streak of days without Tylenol, but I began a new streak of being relaxed all day long. I'll take it.

(Go Packers and the boyfriend's fantasy teams... both going all the way I'm sure!)

Brain Surgery: Part 1

            Round one of the two-part surgery ends. As I wake up from the ICU, I’m being moved to the room that I heard about staying in with 3 other people on the rolling bed. My head feels heavy as can be. It’s aching. My eyes slowly open, and nurse after assistant after another nurse and another continually coming up to me. Waking up is a confusion. One nurse takes my blood, another gives me pillows, another takes my temperature, a clip goes on my finger, another comes in wrapping my arm for blood pressure. I’m overwhelmed. I’m panicked.
            My feelings were coming out. Moaning, crying, saying no. I need to go to the bathroom, as a catheter was just taken out. An assistant closes my curtain and passes a bedpan. I refuse. I don’t use that, I can’t. My moaning and frustration is clear and it’s the only thoughts in my head. Too many people at once, I can hardly move without a thought of pain and a 100 pound head, and I must use the bathroom.
            One of my surgeon’s close nurse practitioner keeps the curtain closed and rids my small quarters of all other people working on my body. She drags over the portable toilet right next to the bed. The confident NP grips my two shoulders with her firm hands. Immediately it grabs my attention, I snap into reality. In a strong, stern voice she says to me, “Chelsey, you are going to get through this.”
That was all I needed. I am out of the first surgery. I survived it. She helped me out of bed onto the portable toilet. I did what I needed to do, she helped me back in bed, held my hand and said, “You’ve got this. Are you ready now?”
“Thank you. Let’s do this.”

Saturday, December 20, 2014

Ice Cream on Me

            I had a gift card to Coldstone ice cream shop and told my boyfriend, Beast, we should go get a treat, and it’ll be on the card so we will get a nice treat for free. We’ve been spending money here and there like crazy and the thought of spending more on something we don’t need just was not crossing our mind this time as our spending money was dwindling.
            So we walk in the shop and my sweet tooth was peaking. We’ve been trying to be relatively healthy, but this was already known to be a “cheat day” where we eat whatever sounds good despite the nutritional facts. We were standing in line checking out the flavors and the menu. I had a couple flavors I wanted to taste right before making my final decision. Beast had his mind made up ready to order, yet almost nauseating how enormous and sweet of a mix he came up with. Ask him, however, and it was genius because the gift card was going to pay for it, so the more extreme the better.
            The lady behind the counter asks if she can help us and Beast was so eager he had to go first. As he began ordering his castle of a treat, I started getting my aura that a seizure was coming on. At this point, I am able to show that I am having an onset, though verbally communicating is not an option. Beast is ordering and there is no sense in me interrupting his detailed description of the gourmet treat so the employee doesn’t mess up his particular choices of size, flavor, and at least 4 or 5 candies being added in the right order, the seizure has started its onset and I began my zone-out stage post déjà vu and chills.
            When I came back to, I was more confused than the seizures I am generally used to. I wasn’t sure where I was, as I was sitting in a chair at a table facing the outside looking through the window. I became coherent to Beast staring at me with a huge spoonful of ice cream ready to be popped in his mouth (heaven forbid it melts before being eaten) but he notices I’m coming to as he drops the spoon in the dish and starts questioning me, “Is it over? Are you ok? How do you feel? Was it normal? Do you need anything?”
            “Just stop talking!” There were so many questions being sent my way and I just wanted to know what happened and why I don’t remember anything at all. I just needed some quiet time to let me think and try to figure things out. I was a bit timid, but I turned around noticing the front counter and connecting it with that disgusting looking bowl of half melted and mixed together ice cream with way too many chunks of brown chocolate candies inside. Coldstone. I recall I started having a seizure while Beast was placing his order yet I strangely don’t remember at all what happened between him ordering and me coming to at the table. I was a bit nervous to share that I did not recollect anything after my thought of “Oh geez, it’s coming. No, no, go away! I won’t be able to order, and even worse I really wanted to try that banana flavor ice cream…”
            Beast asked me if I wanted him to go up and order anything for me. I shook my head silently. In my head I knew I really wasn’t sure what flavor I wanted and I’d have to try that banana flavor before choosing but I don’t remember if I did anything stupid while I was up near the counter during the seizure, so I am definitely not about to go back up there. What if I was speaking jibberish to the people that worked there? What if I was making a strange face or started wandering? This was one of the longest I’ve had, did I lose my bladder control like I used to 10 years ago when I first started getting seizures before medicine because CLEARLY this medicine is not working??? Definitely too timid to even glance at my pants. I’ve got to get out of here. “Can we go?” I asked.
            Beast agreed silently, hesitant to open his mouth after being told to stop talking, and made sure I was fine walking to the car. He began to drive us back to his house, being sure to continue eating his treat. He offered me a bite, and I took one as I started to calm myself down. That gross looking mess was strangely pretty tasty and I kind of wish I got one for myself before leaving. As I was beginning to relax more, I really started wondering how that seizure possibly lasted so long, as my estimate was about 5-7 minutes, and how everything that occurred escaped my mind completely. I decided I should mention it, as it was abnormal.
“What happened in there?” I asked Beast.
“What do you mean? You had a seizure.”
“Yes, I know I did. But I don’t remember anything at all the whole time we were in there from when you started ordering until I came to and told you to stop talking when you were asking me so many questions and I didn’t even know where I was.”
“Which time?” he asked me.
Confused, I answered, “What do you mean which time?”
“I mean the first time I asked if you had come out of the seizure and making sure you were ok and you viciously told me to ‘shut up,’ or when I asked you again shortly after and you told me to ‘just stop talking!’ I figured you were back to being coherent once you started talking to me the first time because you were interacting with me.”
“WHAT?!” I responded. “I angrily told you to shut up? I don’t recall that at all. I came to when I told you to stop talking so I could try and come to and figure things out. Sorry about that, I didn’t mean to be rude to you.”
            Beast cracked a smile. “It’s fine. I was a bit taken back because you are never like that. After I ordered, I turned to have you order and you waved me off so I knew you were having a seizure. I told the lady behind the counter you didn’t want anything, and to make me look like less of a pig, I told her we would share. You just followed right next to me while I went to the cash register to pay and then to the table to have you sit down.”
I started to smirk a little bit. “What’s funny about that?” Beast asked me. I looked in my purse and pulled out my Coldstone gift card, smiled, and apologized that he had to pay with his money as I brought to mind the incredibly huge and overflowing with candy bowl he had finished.
            “I can’t believe you ate that whole bowl you ordered,” I giggled.
            “Yes, but when the only reason I ordered it like that was to put on that gift card you were flaunting non-stop beforehand and I had to pay about $8 for an ice cream treat, damn right I’m eating every last bit of it!”
            I started laughing. “Guess we will have to go back another time to use it.” Beast didn’t find it as humorous as me as he was annoyed he is trying to eat healthy and save money and I am making him get ice cream with me again. His response?
            “Hand me the gift card when we go in next time.”