My toddler whine and sometimes, so do I.

Imagine waking up every morning and all your muscles are tight. Your joints are aching. Your head is foggy. Now, I spend my day chasing after an energy sucking force the Energizer Bunny couldn't even hope to compete with. Most days I do it without whining. I do start to break down. I do whine. Everyone disappears. Except my husband and son of course. My husband holds me and assures me it will all be okay. Which really inwardly aggravates me more because it will most certainly not be okay...not right now at least. My son just keeps it simple. A hug and kiss from him. It works, though. It helps lift the rain just a little bit.

I'm not looking for solutions. I just have a ton of emotions going on and sometimes I need to let out the bad. I just feel like my friends are slowly disappearing. Everyone has their own life...I understand. I still need someone to talk to. I love my husband but I need contact aside from the two boys in my life.

Breaking down

Everyone tells me how strong I am. They don't know how I do it. So if everyone acknowledges how hard it is, why do they seem so surprised when I start to break down?

I love to work. Right now I can't. I have never been the type to just sit around at home. Since I've been home, I only get out to do necessary house supplies shopping (Gabe's clothes, groceries, etc...) and family holidays. I did get to go visit my mom for a few weeks back in August. I loved it. We went out every couple of days. Just to go on walks, go to the library, go to thrift stores. I'm not asking to go rock climbing or anything. The simple things I did at my mom's made life a lot better. She lives across the country. So this had to end.

So I'm stuck inside with a toddler by myself all day just about every day. Taking him out on my own isn't really safe for us. I go a bit crazy after a while. Also, I believe I mentioned how much I hate chaos? I love my son. More than anything. The chaos of a toddler I can take. It's when my husband and I are arguing, the cat chooses to have diahrea everywhere except her litter box, my clean jeans that I put on 20 minutes ago are covered in cat poop, my son is covered in cat poop and he is screaming bloody murder while I am trying to fix things. Yes, I am crying. My life is a huge chaotic mess right now. Little things keep getting thrown in and eventually the little things add up. So please, stop telling me to calm down. Stop telling me I am being over emotional. Stop telling me that being upset over these little things is silly. Because I promise, when you are upset over something most would deem "stupid", I am going to be there to understand and listen. I just need to cry sometimes. My whole life has been shaken around like a big snow globe. I'm going to break eventually.

Having a toddler is not fun when they have more coordination than you

Yup. You read it right. There are times my 20 month old has more coordination than me...and I am 24. Comes with the territory of having some nice doctors molest your brain for ten hours.

First off, my balance sucks. I have to brace myself to look up as in tilt my head back. I can't look up while I am walking as in look ahead. Always down. My apartment complex needs to keep better grounds. I can carry my son about a whole 3 very careful steps. That is a big improvement and just happened in the last month. I trip very easily. I can't handle looking around while moving. I have to stop and brace myself. I am working on this in physical therapy.

My hand-eye coordination sucks. Can we start with the fact that I have limited control and feeling in my right hand? Considering when I first woke up control and feeling were 100% non-existent, I am fine with just limited for now. It's like my skin is stretched really, really tight and my muscles are all wound up.

Simple things take a lot of effort from me. I can only do about 5-10 minute cleaning spurts. Imagine how well that works with a toddler. I can really take him outside much because uneven ground = death wish for me. Or at least another hospital visit for me. You will excuse me if I feel that between having a baby and all the in and out of the hospital while they were trying to figure out what was wrong plus the actual surgery and recovery stay I have covered my hospital quota. The only time I want to see the inside of a hospital again is to bring home a baby. I would prefer mine.

The worst thing is I get winded. Like, we were winding down Christmas night. There were toys and trash everywhere. I picked up most of it and afterward, you'd think I had run a mile. My husband finished picking up the rest. He would have helped from the beginning, but I started while he was in the shower.

Oh yeah, holidays are not fun for me. Too much noise & chaos. I like calm and control. After this last year I really like feeling like I have control over my life. Of course, this is a delusion. I do get confused a bit easily sometimes now. Now like, crazy old confused lady. My brain just catches a little lag now and then.

People will judge you

And while I know it shouldn't matter what people think, it still makes me cry sometimes. First of all, as I said in my last post, my left eye is sewn shut for now. I am already so self-concious over this. Really, very much so. Add it to the fact that I move with the combined grace of a toddler and old lady... People will stop and stare. Someone has walked past the end of a grocery isle and backed up to stare at me before. I took my son to the zoo with my husband. I was sitting while they were playing and I saw someone tap her friend and point to me. Whispers and accusing stares then happened. My favorite was when a little girl (maybe 4) pointed and asked me what happened. I do not mind the innocent curiosity of children. It was when her mom grabbed her hand and pulled her away saying that "That woman has made some poor life choices." I was so floored and she got away before I could correct her.

Also, as you can well imagine, having a 10 hour brain surgery with follow-ups to specialists and weekly therapy visits will rack up some very lovely bills. Medicaid covered my surgery and one month hospital stay. That was about $500,000 I did not have to worry about. Then my insurance started covering stuff. They would have nothing to do with the surgery which is how I ended up with Medicaid. While I am happy my insurance is finally doing what I pay them to do, I am learning about the fun world of out of pocket maximums and what-not. Now, I willnot say exactly how much we owe. I feel that is very inapropriate. I will say that it's not that bad. I mean, it won't be paid off in the next few months short of a miracle...but within the next year is a definate possibility.

So my husband and I have very stressful lives as you can imagine. We went on a date for the first time in 5 months Tuesday night. We needed it. Our marriage needed it. We have been given some money for Christmas. We are ever so grateful. While we have spent some responsibly, we have spent some for ourselves. I also cloth diaper our son. His skin demands it and it is more economical. I have very basic flat diapers. I wanted to invest in a few that would be easier to wrangle onto a distracted, active toddler. I got a few.

I see nothing wrong with this. If you do, you try going months with every penny you earn going towards the basic necessities and bills. It will break you at some point.

So people judge me in many ways. Moms don't talk to me at playgrounds or anywhere for that matter. While I try not to let it bother me too much, I do hurt sometimes. Because I am still a person. Because my son gets deprived of playmates.

I frequently have fights with inanimate objects...

...and lose. Oh sure. I have a few wins. But they are few and far between.

I feel as if I should enter an explanation here. Let me put it real simple. The doctor pokes around in your brain. Cuts stuff out. Messes with things. My brain personally did not like the intrusion. It retaliated. It retaliated ten fold. I have some nerve damage. The tumor was on the left. The left side of my face had partial paralysis. It's pretty much gone now. Still a bit numb, though. My left eye got messed up somehow. It got a nasty scratch across the cornea that would not heal. I still think one of the previously mentioned ICU nurses got a quiet revenge. Well, a nerve was messed up there too. So the absolutely wonderful opthamologist sewed it closed so it would heal and I could keep it. It healed. He still has it shut. I'm getting a second opinion as soon as I see my ENT on the 6th and he gives me a rec. I like my ENT. Not so happy with the opthamologist.

But wait! There's more. Once you get past the facial fun, my left side is all peachy keen. My right side has decided to pick up where my left side has apparently slacked off. I have poor balance. I am very week in my right side. Imagine a toddler just learning to walk. As for my hand...my 20 month old has better dexterity than I do.

So what brought up the entry? I somehow ended up wrapping presents on my own. Not normally a big deal. Normally is the key word here, people. I can't remember the last time my life was normal. We did shopping on a budget this year. I truly hope my family understands. We got a couple of hand held video games for my two nieces that I aquired on sale months ago. It's a Tinkerbell thing. For my little BIL, we are gifting down out Nintendo DS with 3 games. We never play and he wants one. For my husband's godson, a pair of walkie talkies that we also aquired on sale months ago. For my SIL. Something I ran across. She reads my FB with I have put a link to here. I don't think anyone really reads, but...

My son got a play kitchen and shopping cart. Since my husband is working a ton, then we are leaving tomorrow to go down to the IL's, we put his kitchen together Tuesday night. 3.5 hours. Got it on sale for $35. Next year I'll pay more, have less to assemble...I hope.

Again, tonight's entry. Did I mention this surgery has main me more scatter brained and forgetful than I already was? Seriously...I barely remember this morning and you are asking me about last year?

But tonight's entry. I was wrapping presents. I used a gift bag for my Secret Santa. I wrapped the rest. I fought hard and valiantly. I won a couple of battles. Unfortunately, I lost the war. A few people are getting gifts with very interesting wrapping jobs this year. Hey, it's what is inside the paper that counts...right?

Life after brain surgery

In two words: It stinks! I had the long gruesome 10 hour surgery. Thankfully, I slept through most of it. Yes, I did say most. When I woke up in ICU the day after my surgery I could not feel my right arm. I was told I was moving it. I couldn't feel it. I couldn't really feel much of my right side.

I do remember being incredibly cranky. I couldn't control the TV. Couldn't see it, actually. My eyes were screwed up. They would alternate putting a cover over each eye one at a time with some medicine to help them heal. I know people came in and out. I shooed my family out quickly. They asked questions. They talked too much. Even though they said it didn't, I still felt like their presence demanded conversation. I really wasn't feeling to chatty.

The steroids had stopped. Before my surgery, I had an IV. This IV was my enemy and friend at the same time. It allowed them to give me wonderful medicine that took the pain away. At the same time it allowed them to give me the very evil steroids. I was told the steroids were to help keep the tumor from growing any more before the surgery. I knew they were necessary. I still hated them. Every few hours the nurse would come. She would plunge the steroids into my IV and within seconds I burned all over. It only lasted a little under a minute. But for that time it felt as if my whole body was on fire on the inside. Yeah, I didn't sleep through this. To make it worse, this stuff made my body's natural insulin levels go whack. So they had basically turned me into a diabetic. So now I also has to get my finger pricked. A lot. All my fingers looked like they had tried to cuddle a porcupine. I'd rather the steroids. This pricking of the finger stung. For a while after it was done.

I still had an IV. A couple actually. I had also aquired a very fun feeding tube. It went down through my nose and into my stomach. The entry place for this tube was hung above my head. People, this is not a fun way to be fed. You're just laying there in bed and WHAM! Your stomach now has contents where there were none.

So doctors, nurses and other medical professionals fluttered in and out of my room. I liked them. It was like they expected my crankiness and they didn't try to talk all nice and sweet to me. That really annoyed me. Removing a tumor does not remove years from my life, turning me into a child. Quite the opposite. I feel a bit on the old side.

A speech therapist came in one day. Aparantly they do more than speech. They teach you how to eat and stuff again. She gave me a piece of crushed ice. My throat didn't work so well and I thanked God ice melts. Then I cursed under my breath because the feeding tube had obviously moved in for a while.

It really started getting fun from here. My throat was starting to heal up from being raped by a tube and I was starting to be able to talk again. I am sure the staff on rehab thanked the staff on ICU for the gift of me...with my found voice.

Why I am posting this

Eventually, I am going to talk about life after the hospital. Being wheelchair bound and stuck in an apartment where I couldn't get up on my own and my chair didn't fit through most doors. While I had a toddler.

I wanted to use my second post to explain the why of this blog. There are a few reasons.

1) First and foremost, I am writing this blog for me. While this has all creeped by, at the same time it has been a whirlwind of chaos and disorder in the life of an active Type A young Momma. I need to get it all out. I need to put it down.

2) My intentions with this blog are never to make anyone feel like they shouldn't complain. That my life has been harder and their troubles are petty. I have heard of two women who have lost their babies this year. Both about my son's age. I only knew them through message boards, but my heart still hurts for them. I believe they have it way worse than me.

That does not mean this while thing has been easy. It does not mean I have no rite to complain. I do try not to whine about it all. I do believe I am entitled to a small pity party now and then. Nothing long or life disrupting. Not often. I just am. This is another reason I am doing this blog. For my pity party days. When they happen, I have a place to come and look back to see how far I've come.

3) The type of tumor I have is not ultra rare. There's an organization for it and everything. They have a message board full of people who have it. What makes my situation so unique is how it's effected me. My tumor got way bigger than normal. Seriously, it's like the thing decided it was going to compete with the size of Roseanne...in my head. The aftermath and how badly I came out of it. Actually, I came out alive, which is good. It just took a serious toll on my neurological system. The fact that I had barely been married a year (Jan 23, 2007). I had a son less than a year old. I could find no one in a situation quite like mine. I am one of the youngest people I have ever met to have this. It has all been a bit depressing. Most people can have some radiation or have the surgery and are in the hospital a week...Me? I have surgery, in the hospital a month, and I am in physical therapy for an unknown amount of time. Doctors say it could be 18-24 months.

I just wish I knew someone who could relate. I just couldn't find anyone. Maybe I can be that someone for another young person who feels like their life was turned upside down. Who cries at night wondering if it will ever get better. Who is fighting to find some hope to cling to.

These are my main reasons. That and I felt like jumping on the bandwagon of the blogging world and this is the most interesting thing in my life. Scary, huh?

My story in a nutshell

My story is looong. I could write a book. I've decided to save the mass torture for another time and just write a short blog instead.

When I was 22, my husband and I were blessed with a beautiful baby boy. Gabriel. Weighing in at 8 lbs 4.8 ozs; 21 inches long; born in about 7 hours. He is my angel. I don't know if I would have had the strength to get through what would follow what I had thought to be the worst pain in my life without him.

I delivered in April. The headaches started coming. Migraines. They kept coming more often at longer intervals. The hearing in my left ear quickly phased out to pretty much non-existent. My balance started leaving me in it's dust around November. I fell twice while holding my baby. I had no signs of losing balance. I just tried to take a step and it just didn't work. I got many bruises. I was able to turn us to where I was his landing pillow both times, thank God.

I remember Christmas. I felt horrible. I wanted so bad to be active in my son's first Christmas. I did as much as I could. I just remember the naseua and pain.

By this point I had lost my job. My frequent migraines had me calling in a lot. My bad hearing issues were severley hindering my customer service abilities. My balance...That made it just about impossible for me to do the usual running around I did. Unable to effectivley perform the job I had worked so hard for, I stepped down. I decided maybe I was over-tired and over-stressed. I was going to take some time off with Gabe. Give myself a chance to rest.

One day in January I was out running errands with my baby boy. I wasn't feeling to hot so I stopped at the McDonald's near our apartment. Gabriel very happily chewed on his french fries. We got up to leave and the scariest thing happened. I got crazy dizzy and felt sick. It took every bit of strength I had and all of my will to get my baby into his car seat safely. I got into the driver's seat and cried. I was so scared. We didn't have health insurance. Plus, I couldn't work. Now I can't take care of my baby. I didn't know what was going on.

It went downhill from there. Fast. A friend of mine was out of college for winter break. When my husband wasn't home, she was there to watch my son while I slept. All I could do was sleep. My appetite kept going down. Yet I still didn't lose that stinkin' baby weight! It got to the point where I couldn't even keep liquids down. My friend finally drug me to the charity hospital where I waited for hours to be told I was dehydrated, pumped full of fluids and sent back home. Guess who saw me again 3 days later? You guessed it.

This time I was smart enough to write down all my symptoms for the doctors. Every. Last. One. Took a page and a half. Don't worry, I only used one sheet. Front and back. The doctors ordered an MRI for me a week from then suspecting MS. Two weeks later I saw their neurologist. He kept making me touch my nose, his finger, follow his finger, etc. He talked to his med students a lot. They all nodded and he was talking about things I was doing. My eyes were following his finger funny. They all nodded and scribbled. I sat there thinking 'What's going on?!' Then every one left. Including the doctor. Hey Doc, I really understand this is a teaching hospital. I don't mind helping mold young minds. As long as they do not have sharp objects near my person, we're cool. Really. But can we clue the scared, sick momma in? A couple of med students walked in. They saw me and looked like deers in headlights. My heart stopped and stomach sank. I hear the last words I wanted to hear. "You have a brain tumor." My mind froze. My whole body went numb from shock. They tell me the type they are sure I have is almost never cancerous. It's the type of brain tumor to have. It's tiny. It's not even on my brain stem.

They sent me home saying they were going to send my files to a hospital 1.5 hours away for a neurosurgeon to review. 2 weeks max. 1 week later, I could not even move on my own. I had to have help to do anything and everything. I ate 2 Oreos and was full. I lived on Oreos, by the way. I was taking migraine medicine after medicine. Just trying to keep it down to a dull throbbing ache.

My dad finally called the hospital 1.5 hours away. A nurse told him she'd talk to the neurosurgeon and call back. She called back within ten minutes. That terrified me. Next thing I know, I'm being driven to the hospital 1.5 hours away from home. From my family. From my angel. I was admitted that night. There were wires and tests. EKGs, X-rays, more MRIs, CAT scans...That was Friday March 13, 2009. Ironic date, yes? I was still unsure of everything. Nurses kept trying to assure me it was all okay. This scared me more. I was put in a room. Saturday evening after all my family and I had left and it was just me and my room mate, who was a wonderufl older lady, the neurosurgeon came in. He pulled a chair up next to my bed and sat down. Uh-oh. He looked really upset. He looked like he was trying to figure out a way to tell me something. "Am I going to die?" came my quiet plea for an answer. "Not if I can help it." He went on to explain that the type of tumor I had was an Accoustic Neuroma. Usually a very harmless tumor. Radiation and sometimes a little surgery. Mine had gone unnoticed for too long. It was huge. 1.5x2 inches of mass was growing on the left side of my head. On my brain. In my ear canal (That's why I couldn't hear from that ear anymore!). On my brain stem. This was going to be a risky operation. He didn't think he could do it. He had to consult with another neurosurgeon at another hospital. A cranial specialist. I asked him what my odds were. He assured me he wouldn't opporate unless I had at least a 50% chance. It was then explained to me that I was going to need extensive time for recovery and rehab. Also, my hearing in my left ear had packed it's bags and left...permanently.

The doctors left and I took a minute to process this. Then I burst into hysterics. There was no family or friend withing 1.5 hours from me in any direction. I couldn't calm down enough to pick up a phone. Then the woman who shared my room, a young kidney dialysis patient and grandmother came over. She sat on my bed and hugged me. She called my husband. She sat up all night talking to me. I still wish I knew how to contact this woman. She was one of the many angels I met on my journey. I will forever be grateful to her and hold a place for her in my heart.

The next day I was transfered to another hospital. No closure to home. It was my first time in an ambulance. I kept watching the black truck behind the ambulance, following way to close. I remember telling the medic riding in the back with me "I swear, if this jerk hits us and kills me after everything I have gone through with this tumor. So close to surgery...I will come back as a zombie and eat his brains. Oh crud. I'd probably starve." It was my new way of dealing with things. I tried to make everyone laugh. If I heard people laugh, it was all going to be okay.

On the morning of the 17th at 7am I was prepped and brought back for surgery. I remember saying some crazy things before I finally went under. I will never repeat these things. What was supposed to be an 8 hour surgery turned into a 10 hour surgery.

I woke up the day after the next with a tube down my throat. I could barely make a noise. I remember thinking the tube was choking me and frantically trying to get the nurse to understand I needed it out. I felt such relief. Oh crud. There was a feeding tube down my nose, too. There were tubes and wires everywhere. I couldn't feel my right arm. What the heck, the surgery was on the left and I can't feel the right side of my body?!? I was cranky for a couple of days and drove the nurses in ICU nuts. I lived on the call button.

A few tests later I was moved to the rehab floor. I am still sure the ICU area threw a party. I was more agreeable in rehab. I began getting feeling back. A speech therapist worked with me so I could eat again. They took the feeding tube out. The nurse warned me if I didn't eat enough, they'd put it back...and this time I'd be awake. I ate.

After a month of physical, occupational and speech therapy. I went home. the Wednesday before Easter. 1 week before my little angel's first birthday. I have missed about two months of his life since I've been sick.

I completed speech therapy a few weeks after leaving the hospital. I always was a chatterbox...occupational wasn't far behind. I'm still in physical. I also stay at home full time and care for our 2 bedroom apartment and toddler while my husband is at work.

This was the nutshell. Kinda. I said I'm a chatter box, didn't I?