Thursday, October 21, 2010

A long and bumpy road...

At least once a week I have someone say, "Melissa, why haven't you updated your blog" I normally laugh it off and make some excuse that I have been busy or have nothing to update, but I have to stop lying to myself and everyone else. The truth is, I got so bitter about my situation that I had no drive to write and felt I had no reason to be positive.

I believe my last post took place before things started going Topsy turvy on me. I found myself back in the hospital with a leaky brain for about 8 days, that really sucked the life out of me, literally. I was doing a little better and then a week later I was back in for another 7 days for more complications. That my friends is when the spirit many of you said you admired, died. For once I couldn't control my situation, I couldn't fix myself. I started questioning my own strength and started to feel like I had made a mistake in my decision. Please don't get me wrong, I'm not saying any of this for pity..... I became angry, bitter, miserable. I snapped at everyone, I was a miserable person to be around and quite frankly, I gave up. I started to see my body change, for the worse, I was no model before! But for 8 weeks I was on steroids, and started taking neurontin and needless to say, the pounds packed on. Before I knew it I was 30 lbs heavier and on complete restriction, I couldn't even lift a gallon of milk. So...I gave up.

I went back to work in April, and put on a fake happy face for those around me. What they didn't know was I was still in so much pain I couldn't function and I was hurting so bad on the inside that I cried, a lot. I started pushing everyone away from, my friends and my family, worse, Ryan. I had an attitude there was nothing anyone could do to change it. I was angry. Work was rough, i wasn't recovering. I wasn't the Melissa that I used to be. Which was the exact reason I wanted to have the surgery, Melissa was fading, my life was pain, where did I go? Then I find myself falling even more away from who I am? It was harder than I could even describe. It was a dark period.

Then...I woke up. It was like I have watched my life happen for the last 9 months, it just passed me by. I was asleep on the inside, I was numb to everything, I felt nothing. It finally took a trip to open my eyes. We went to Punta Cana in September for our anniversary, as well as mom and dads and Sally came along to celebrate, cause hey, I survived. I'm on this amazing vacation, reliving my honeymoon, and I am miserable. I wouldn't let anyone take a picture of me, and worse yet, I fought everyone, the whole time. Towards the end of the week, Ryan finally just, yelled at me. Said, where are you? Where have been? And that is when I woke up. I wouldn't be ALIVE if it wasn't for my friends and family that held my hand and stayed with me through this. And yea, a lot of CRAP happened along the way, but I finally realized that there is so much more to life then the little petty things that stop us in our tracks. I was trapped inside my own body and watching my world just go by....Yes I have been married a year but most of that year, I was not much of a wife....I can't live like that anymore.

So...I guess I am back, no, let me rephrase. I am back, mind, body and soul. (Well ok in all reality I'm only 90% in the whole body thing, there is still 30lbs of steroids and neurontin that need to go away but baby steps). I forgot how much writing made me feel better....

Yes, I still have a big brain. Yes I still have my pain days. And YES I am alive and ready to start my life and future, because each day is a gift and we must remember that we were given this gift. So, what are you going to do with yours?

Sunday, February 21, 2010

Set Backs Can Push You Forward

So my recovery process has had its fair share of ups and downs, which are to be expected. I briefly wrote about the Monday post op trip to the hospital and how it actually pushed me forward to feel better....

Well how was I supposed to know it was going to happen again? My stitches finally came out on Thursday and I was elated. The doctor told me I was healing great and should only have a few more weeks of taking it easy but I HAD to take it easy. My steroids were to end Sunday (today) and there was possibility that swelling and leak would come back. Well all I knew was Thursday night I slept through the night for the first time since my surgery and I felt like a whole new person. I spent the day with my dad, and yes in the process finally went to get my name changed, only 5 months later....

So Friday I was pretty beat so Ryan and I took it easy for the most part ... you see there is this pesky shelf in our downstairs bathroom that really wasn't hanging on the hinges right. I reached up grab some TP and the whole thing came falling down right toward me, natural instinct is to reach out and catch it.....well 3 weeks post brain surgery that instinct probably wasn't one I should have done and I did. So Ryan came rushing home like I broke myself in half, I was so mad at him....I was fine. I get upset that everything thinks I'm going to break. Well anyway we took it easy the rest of the night.

Saturday morning we got up and went to get breakfast at this amazing new diner here in Cranberry and then headed to the homefront to visit with the parentals. On the way out there I felt something wet on the back of my head and just brushed it off thinking the ever melting icicles got me. Well we were sitting at his parents house and I noticed that my head was getting more wet so I pointed it out to Ryan, we just decided to keep our eye on it. I really wasn't feeling well but didn't say anything because I was happy to be out of the house!! Well the leak kept happening and I figured it was just because my stitches came out, I knew to expect some fluid.

When we were sitting at my mom and dads I felt a sharp pain shoot up my head so I figured at the point we should go home. We stopped to pick Sugar up at his parents and guess what, I freaking slip on ice and throw my body into the wall so I don't fall. OUCH........

When we get home my leak is getting worse so we start googling and decide to call Dr. Beijanni. He wanted me to wait the night out and if it got worse head back to the hospital. I finally fell into a drug induced coma at about 1am and at about 6am rolled over on the couch and realized I was soaked. Yup looked like just got out of the shower but I didn' down to the hospital we went. 5 more stitches later and some antibiotics with one more steroid to take I sit here wondering why is it when I take 2 steps forward it feels as though I pushed 4 steps back....I'm on watch for the next 48 hours to make sure the stitches hold and the meningitis doesn't come back....

So what I have learned is that I am not superwoman no matter how much I want to be. It is OK for me to admit defeat from time to time and take it easy. I'm never going to heal if I keep pushing myself to do things I'm not ready to do. And the whole 2 steps forward to get pushed back 4 thing, that is life, and I of all people know that. Its these instances that make us stronger...these are the incidents we should welcome because they help shape us into the people that we want to be. I can't get discouraged about my situation especially when there are so many others out there that are going through so much more and carry themselves with such grace and integrity that makes you want to be better. So the lesson learned here today is use these setbacks as stepping stones to improve your future and strengthen your heart, mind and soul, for it is through these setbacks that we discover our true potential and become the amazing people that God wants us to be.

Tuesday, February 16, 2010

Cabin Fever

Here I am, three weeks post op and two weeks post leak. I can't believe how fast time is going! Yesterday was my first big outing since the surgery. Ryan took me out to lunch and to the mall, I walked around myself for about a half hour but got pretty weak so he stuck me in the wheelchair. The excitement of my trip was that I got a new pair of tennis shoes and two new pairs of glasses!!

The hardest thing for me to do is relax, anyone that knows me, knows that relaxing isn't in my vocabulary. My mind is constantly running with everything I should be doing, want to be doing, would rather be doing....the list goes on and on. So sitting here pretty confined has been killing me. I had a very hard adjustment at first because there isn't ANYTHING I am allowed to do, this is only the third time I have looked at a computer screen. Going to see Beijjanni every Thursday to be told that my stitches need to stay in and I'm' overdoing it has been the worst part.

But I understand that I did kind of just have brain surgery, so I do have to take it easier. So, instead of sitting here and being defeated I am doing things with my life. I am reading an amazing book right now, its called "Never Give Up" by Joyce Meyer, I recommend this reading to ANYONE who has ever faced ANY adversity in their lives, meaning EVERYONE. The words and meaning behind her writing are so unbelievably powerful. Instead of sitting here feeling sorry for myself I'm setting up my life for everything I couldn't do before. The power of her message has truly touched my heart and soul and I hope and pray that someday someone will tell me I have impacted them in the positive way she has impacted me.

Just because I'm stuck at home doesn't mean I can't do anything, there is so much more I can do, and every morning I open my eyes and realize that I did it, I survived the scariest decision of my life and I am making something of it, Gosh that is such reason for me to want to do something wonderful. So what do you say, who wants to make big things happen with me? I'm hear to listen and hopefully help you make a decision that will positively impact your life, the way that my surgery has impacted mine so far.

Don't get me wrong, I still have a LONG way to go, I still have some pains and weakness but I am ready to live the life I deserve, and I think you, the person reading this, should be ready to live the life they deserve as well. So don't forget how special you are, whether you have cabin fever or not!

Sunday, February 14, 2010

I'm back!!

Hey Everyone!!

I know its been a lot longer than I had expected but I didnt realize how hard it was going to be to look at a computer! So, I am going to update over the next few days to keep everyone back up to speed with how everything went down.

So let me start at the very beginning...

January 25th, 2010....the first day of the rest of my life.
The only way I could describe the emotions running through my body that morning were like a mixture of feeling like Christmas day but at the same time feeling like you were walking into a firing squad of uncertainity. 3am came very early as I had to get up to get a shower and get my stuff ready to roll. Ryan and I headed for Shadyside hand and hand. We were pretty quiet on the ride in, not really sure what to say or how to act. I got into the check in room and saw that Beijanni had 6 other surgeries scheduled, holy crap. They gave me an id number and instructions for Ryan to watch the board for updates on my condition. At about 5:30 am they called the first round of troops up to the floor. There were about 8 of us being escorted to pre-op, it was almost like a cattle call of sorts. I got situated in my room and within 5 minutes they were sticking me with needles. The nurse went to get Ryan to come up to sit with me, which was nice. At about 7 they came in to give me my transfusion, told me they had to wait about an hour or so and if all went well they'd be taking me back. In that process mom, dad, sally and my in laws had shown up. It was nice having them in there with me. I watched them take patients back and forth as I was being transfused, it was slightly nerve racking but what can ya do when your blood is too thin? Dr. Beijjanni stopped in on his way to his frist surgery and marked my head up, that was fun. At about 9am they came in and said that my transfusion had work and they were going to administer one more before they took me. So they started loaded me up again. The nurse came in and said I'd be going into surgery around 10 or so, so everyone left me alone to rest. 15 minutes later they were in the room ready to take me!! I about freaked out but thankfully everyone got upstairs to see me in time. I was fine until they wanted me to say goodbye to everyone, I guess that is when it hit me...I'm really doing this.

Thankfully my new best friend the nurse started putting some nice drugs into me so my tears were short felt....the last thing I remember is them taking me into the room and telling me I was in the best hands and was on my way to being pain free. I closed my eyes on that note.....pain free.

From what I have been told I was in surgery for 2 hours. Had a halo and everything...can you believe it? I mean you see it on TV but for it to really be on you is kind of crazy. When everything was said and done he had removed my C1, did the dura plasty and inserted the plate. Apparently I was an excellent patient, like we had any doubt. I remember waking up in recovery not being able to move my head and being a little on the freaked out hurt pretty bad, that I remember. Dr. Younes (my hemotologist) came in to give me a hug and tell me that he was there the whole time with me. They wheeled me into ICU and I got very sick....I saw my mom and called out to her...I found out later that my reactions were the same as my uncle Jim when they took him into the Neuro ICU after his stroke, pretty weird, right? Everyone was there, I remember I couldnt see Ryan and I was yelling at Cody because my blood pressure cuff was too tight. It pays having friends in nursing because he made sure I had the best care that night! I dont remember much of the whole hospital stay, I was pretty out of it until Wednesday....

They sent me home Wednesday night and I think I slept for the next 5 days. Again I dont remember much, I know I was in pain but it was a different pain. The first thing I remember noticing Tuesday morning after surgery was when I opened my eyes colors were actually brighter. Can you believe it? I could see clearly, my arms didnt hurt and my neck pain was gone (well minus the giant incision n the back of my head).

Everything was going great until the following Monday. I suffered the set back everyone had feared. I woke up extremely incoherent and vomited about 10 times in two hours. Ryan and my dad rushed me to the ER where the doped me up pretty good and did a CT. My brain was severely swollen and there was a leak in my patch causing a meningitis. So, on stereoids I went. But for as awful as it was, it was the turning point, because come Tuesday morning I felt like myself again....

The recovery itself has been very different. The stereoids make me very emotional....and hungry!! It is very hard to take it easy, I can't even pour a glass of water. So this is still a trip and I still have a long way to go.

But I wanted to let all of you know that I have made it, and I am still fighting. Thank you all for your thoughts and prayers through all of this. I am so lucky and blessed, its touched me in a way that I dont think anyone can understand.

So now that I"m back I'll update more often with how things have been going for me, its the beginning of the rest of my life...and I can successfuly say I have been 'pain free' for 2 and half weeks!

Sunday, January 24, 2010

Here we go.... we are, a mere few hours away from the big day. I have to be at the hospital at 5am, yea that early. Apparently I can't be a normal person (although we should have learned that the day I was diagnosed with Chiari) but I also have Von Willebrands Disease, meaning my blood is missing some protein it needs to clot. So I am taking a journey to the hospital a wee bit early to attempt a transfusion of sorts, if this works the surgery will go as planned, if not ,well its back to the drawing board for me and my big brain.

I have been going through the motions the last few days getting everything ready, packing a bag, getting comfortable sweats to wear, cleaning up and doing laundry yet its just now hitting me. For the last however many years I have lived in pain, pain that never had the same face, it came and went as fast as it showed up. It would trick me and come at the most awful times. A year ago the answer to the question of why I was in pain was answered, and if a few hours I go to war. I am fighting this and I am going to win. The transfusion will work, the decompression will work, and this time next month I will be able to say that I have been waking up pain free.

A friend of mine told me that it would be here before I knew it, and I didn't believe her. Yet, here I am, almost in shock that it is here. I'm debating on going to sleep tonight, I have to be up at a weird way, it feels like Christmas Eve. Like I will wake up in the morning and not be sure what is under the tree until I get down there. I'm not sure what tomorrow will hold, until I get there.

So does that mean Dr. Beijanni is like Santa Claus?? Cause if that is the case, I kinda wish I'd get a puppy or something instead of a few days at the hospital and a plate in my head. hmm...I changed my mind, I don't like the Christmas analogy.

So here is to hoping that my blood isn't thin and everything goes smoothly! I will try to update as soon as I can, I'm not sure how that will work. I will have pictures and the play by play, as much as I can remember that is. I'm going to ask Ryan to write things down for me, I'm sure I won't remember.

I guess I am signing off for now....take that Big Brain and Thin Blood...I OWN YOU!!!

Monday, January 11, 2010

Live Like We're Dyin

You gotta start looking at the hands of time we’ve been given here. This is all we got and we gotta start thinking it. Every second counts on a clock that is ticking, gotta live like we’re dying. We only got 86 400 seconds in a day to turn it all around or throw it all away. We gotta tell them that we love them when we got the chance to say….

Now before you all start panicking thinking my worries are getting the best of me, there is a reason I wanted to talk about this particular song lyric. Most of you probably know that this comes from the song “Live Like We’re Dying” by Kris Allen. I was driving into work this morning and heard in on the radio for about the thousandth time but today the words really started to sink in.

In my previous posts you may have noticed a trend of me speaking about seeing the true colors of people when you are getting ready to go through something huge. You really find out who cares about you in your friends and your family. They say the same about planning a wedding (which again, was experienced first hand not too long ago). Why is it that it takes a major event to discover who truly cares, and why is it that the people around you do not always care? I suppose this is a topic I have struggled with throughout my life.

My parents always told me that I tend to trust people to easily or always give them the benefit of the doubt, which in turn ends up hurting me in the end. I have always been this way, I have had ‘friends’ take advantage and walk all over me, I have had ‘family’ truly make me feel like garbage, yet I always go back for more. It is not that I am a weak person, I just feel that if I care about you, I’m not giving up on you.

So why is it that others can’t be the same way? We only have so much time on this earth, are you going to be able to look back at your life and say, “You know, I gave it all I could and I was a good person. I loved everyone in my life and tried my best.” Or are you going to say, “Screw them, I’m not wasting my time…” Hopefully you are going to say the former.

Why is it as humans that we generally let the smallest things destroy our relationships? Whether it be a misunderstanding, a cloud of jealousy, or a simple lost confusion, it isn’t worth it. I do not understand the drama people let into their lives and how they react to it, it is beyond my comprehension where the days of communication went. We simply take another road and do not TRY to fix a problem. Communication is a two way street, it isn’t up to me, or to you to attempt to make things right, it is a collective effort. It is my hope that bridges can be fixed and stronger foundations laid for myself, my family and my friends. And for you, the person reading this that may be going through your own life struggles. It’s not the end of the world, it’s the beginning and your fate is your own hands, how are you going to play the cards that are dealt to you? Hopefully you are going to open your arms, your mind and most importantly your heart and try to live every day to the fullest, so when you look back at your life one day you can say “I lived it the best I could and I have no regrets, only love”

Here we are, exactly two weeks to the date and a certain calm is blanketing over me. I am surrounding myself with those I love, and the door is open for you to come in and ride this journey with me, I promise, I’m not going to let any of you down.

Wednesday, January 6, 2010

I Want to Be Selfish.....

19 days and counting...and I want to be selfish.

How do you want to be selfish, Melissa? Well, easy, I want to put if off, I am ready, but I'm not ready. Sure, that doesn't sound too selfish to a lot of people, selfish would be going through with it. But it is not. For the last 6 months I have been affecting the lives of others by how I feel. Examples:

My husband. 3 years ago he started dating this vibrant, fun, happy girl. Now, he is married to a girl that can't even get out of bed in the morning without his help. Now, how is that fair?

Work....last year, they hired someone that was aware of a condition she had, but still went to work everyday with a smile on her face. Now, they employ a zombie who is either on pain meds or muscle relaxers 95% of the time who is lucky to make it a full 40 hours.

Parents...had a daughter that was there for them when they needed help around the house. Now, have to worry about how she is doing on top of themselves, coming over and helping her around her house.

Selfish isn't going through with the surgery and asking my loved ones to help me through recovery. Selfish is not going through with it and continuously affecting the lives of those around me. You see, the best way to describe this is I wear a multitude of masks. You see me walking through the office and I'm giggling and laughing, always optimistic. You walk into my office and I am slumped over in my chair looking at anything but my computer screen because the glare hurts. You see me being compassionate, putting everyone else before myself. You see me pretending the pain isn't there, making excuses like, "Oh it doesn't hurt today, I think I just slept wrong. No, I'm feeling ok, its just cold in here and my eyes are blood shot". The face behind the mask is just me. Nothing exciting, but all the same, a person that wants the life back she once had. When walking the dog didn't mean ouchies, that sleeping a certain way didn't mean pain for 2 days, that coughing didn't bring tears to my eyes because it was going to hurt.

This weekend I was asked by a few family members, including my own mother, is this really the only option? Yes, it is. Because people aren't aware, enough research hasn't been done. That is why gaining awareness is the most important thing! If I had the money I would get a billboard and say, Yes Chiari is real and it hurts, donate money for research today!! But, I don't make that much money!

So, let's do this. Let's get the band aid put on the problem so the energy I have can be used to raise the awareness and help others gain understanding. It's a start, and I feel like it is what I am supposed to be doing. And then of course once the recovery is over I can focus on being me again. So no more masks, the smiles will be real, and brain will fit in the skull like it was supposed to in the first place.

My new nickname at work is "Brain". It is funny how it means something so different to me then one would think. In high school, being called Brain was like social suicide. That meant that you were smart, probably not considered attractive the popular boys and you had a 'bright' future ahead of you. In high school I don't think I would have minded it too much. I definitely wasn't the smartest cookie, and I wasn't the most attractive. In fact, I think plain Jane is a perfect definition for who I am. I was all personality, and I still am today. If I didn't have a personality, what would I have? A big brain. Yea, not so much on the fun side. So I take the nickname Brain with a smile, because even though it means I have a big brain, it makes me feel smart. Why isn't that the case, you think if a person's brain didn't fit in their skull that would mean they were super smart, I missed that train. Dang. But even though the smarts weren't there and I was a plain Jane, it worked for me, still does.

So, here we are, 19 days away from the beginning of the rest of my life. I can hang the masks on the shelf and just be me, because that is the best look on me anyway! :)