Tuesday, February 25, 2014

Social Media, 2years ago was DBS brain surgery #2 of 4. Life today.

OK. So I have caved into the social media blitz. I personally was not a fan of Facebook simply because reading status on people washing their hair didn't interest me.

So I made a FB page not of me Tom *******, I made one of ClusterHead Survivor. A guy who had 4 brain surgeries and has Cluster Headaches.
I share my experiences with people. So far it has been great and connecting, supporting and caring for other cluster heads alike. I can only imagine people who physically know me are upset I do not add them as a friend because I personally do not know a single FB friend. They are all sufferers like me. That was the point of making a FB page.

I am on Facebook as "ClusterHead Survivor" (space in between Head and Survivor)
I am on twitter as @ClusterHeadTom
I am here on Google + Cluster Head Survivor
I have this blog and on YouTube my page is 'ClusterHeadSurvivor" (no spaces

So I think I'm covered. I don't really get the vine, instagram thing. Maybe my boy will show me.

Sunday was the 2 year anniversary from my 2nd and my 1st major brain surgery. I did not celebrate that day because the Daytona 500 was on and that is tradition in my house for father and son to be glued to the TV. been doing it since he was born. And my fav driver won.

I also didn't want to remember the actual surgery or there after on Sunday as it was quite the day...
I have never really gone into specifics about the brain surgery so today I will.

The night before I pre-registered at the hospital. I allowed my son to grab my clippers and have at my head making any funny designs shapes and sill haircuts the day before. He had a good laugh at my expense and I went along with it...got some great funny pics. I had never shaved my head in my life before and always wondered what it would look like completely bald. So I shaved it to the wood. I have an egg shaped head. Pointy at the top and a few dents....All makes sense now. LOL

So my wife and son and I went to the hospital for pre registering. All normal crap, can not eat, drink, chew gum  nothing day before. My wife and son at the hospital in my bed beside me. My wife and son put on a brave fake face. I knew deep down they were hiding their fear as much as I was. I was my typical self making jokes with the nurses. Being my comedic self. But my wife and son put on the bravest face. They didn't let on how scared they were and or did I. I thought to myself.

 Holy Shit. This is it, there is no backing out now. I signed all the papers, I am in the hospital. No changing my mind. I kissed my wife and son good night and they went home. My wife had called before bedtime.

 And the next morning I woke up and my wife and son were there. I slept OK. I am not sure how they did. Within 5 min of their arrival down we went. I met my surgeon in the hall way and he was his joyous self. Funny, smiling and confident. Which is what I needed. Since I was about to be the 2nd in Canada and the 17th in the world to have this surgery...yeah I was freaking scared. There were risks of cerebral hemorrhaging (bleeding to death) and infection.

So the surgeon is about the place the "halo" on my head. First 4 freezing needles....I forewarned him I do not taking freezing well and will need extra...I know this from the dentist. 4 needles turned into 21 before he could put the halo on my head. My forehead was so swollen my eye brows were pushing my eyes closes almost. The halo was heavy and painful. I felt it as he screwed the bolts into my head. The bolts screeched each turn. I asked if he had WD-40...LOL. So once installed. IV into my arm.

And then the kisses and hugs from my son and wife. Oh shit, this was hard. What if I died.? What if this was the last time I seen them? How would they be after I passed? I am a christian and believe in my heart I will be with God when I die, but will I miss them in heaven? My heart cries every time my son goes to his moms  so will this be worse? Jesus. This is hard. My son just buried his cousin 3 weeks prior. She was murdered. He is still grieving. Oh my god, my wife. We are newly weds. She is the best thing that has ever happened to me. OK, God. I want her to be OK. I want her to be happy if I die. My son. Please carry my legacy of helping others who suffer too. Please be strong. I love you both so much. I am crying inside so bad. OK...fight the tears...be strong. Show no fear...Whatever we all thought that morning. Whatever we all felt inside...only the words, we love you and you be OK came out of their mouth. But I know they all thought and felt the same.

So I am wheeled into a waiting area. I'm naked under a sheet. Freezing. Halo tied to my head. Within a minute into OR. I don't want to die. I'm not ready. In my head...I sang 'How great is our God". they wheeled me in...Room ice cold, and cold feeling. Like in the movies. Huge stainless steel lights,tables, machines, everyone in scrubs introducing them self like they were having dinner at my house. Shit. This is it....

They get me off the bed and into this dentist type chair. It was as comfortable as sitting on cold rocks. The anesthesiologist came and explained what was going to happen. How I would be sedated yet awake. I explained how violently sick I get from it. Also how I woke up for a split second in my first surgery. So I he puts it in and I'm drowsy. I nod off and then....

I feel this like cordless drill into my head being drilled into. Holy Frig. They re drilling a hole in my skull. Don't die, don't die. My surgeon...How ya doing? Do ya feel it? Yes...My arse is so much in pain. I am told do not move 1 mm. I tried and they yelled at me...OK its numb. Continue.

I nod in and out of sedation. I am praying like I have never prayed before. Next thing the surgeon says OK. We are going to eternally hook up the pacemaker (neurostimulator). he says Tom, look at the clock on the wall. I did. He turns it on and starts playing with the adjustments. OK playing was a bad word...whatever he did my left eye ball spun 180 degrees upside down. My right eye stayed normal. Then I saw 2 clocks...then I got really nauseous and dizzy and said shut it off. He did and then said.

OK. We install the pacemaker in your chest now. Now I am knocked out. I wake up in recovery and felt like a transport truck had run over my head and chest. I had never felt pain like that before. It felt like I was still under the truck. I was extremely nauseous and dizzy.  About an hour later my wife and on came in and then they took me to an isolated room. Immediately starting vomiting blood and whatever was in my stomach. This lasted 5 days non stop vomiting. My throat was very sore and was hard to swallow from the breathing tube. It was far worse than surgery. The pain was incredible. I kept thinking how senior citizens have this surgery for Parkinson's and how the hell they manage to live through it. I wasn't even 40 yet. What the heck??? My head was swollen. I had 28 staples in my head and it felt like a zipper. My chest and arm,neck and head hurt. But most of all I just wanted to stop vomiting to end the nausea.

Constant doctors and nurses coming to visit me and the surgeon and staff were great. No complaints.
That night...I had an attack. No meds. I beeped my nurse to come but she was busy and did not come for 45 min. I was crying thinking all this and I still got attacks...but it was off and I had to wait 2 weeks for it to heal before they could turn it on and program it.

My wife was there night and day until she returned to work. My son after school and my mom and dad came daily. My wife's mom and her brother came to visit. I really layed there and thought holy crap I have a wife who married me 2 months ago knowing this was happening. She truly deserves so much respect and love. Not many women would marry a guy knowing they are sick and then embarking on a life altering brain surgery. She really is my angel. I knew marrying her she was and its why I married her.

My son. well, he is stuck with me being sick or not. Ill always be dad no matter what. He to this very day now age 15 has gone through more than he should have but is so strong. They gave him an award upon graduating public school and as soon as the teacher said we about to give this award to a boy who has gone through so much anguish, so much trials and tribulations  and always come to school telling jokes, and smiling. I knew he was talking about my son.

So, its about Day5 in the hospital and I am able to slowly feel better. My vomiting has subsided a tad. I look over at my wife...and she is crying. I said 'honey, what is wrong? "Nothing" she says, I ask " is it my 28 staples in my head"..."No" she said. I ask " is it the stitches in my chest?" "No" she says... I then ask..." Is it because I'm sick","No" she says....I then say,"well what is it, why are you crying"...her answer...."WHERE IS YOUR FRIENDS?"....... Not a single get well card, not a phone call, not a text, not an email. Not a visit from2 of the closest friends I had at the time. 2 f the closest people who at the time had remained in my life where I would have for dinner, hang out and do things with and for.....and this happened through all 4 brain surgeries. So yeah. I guess I don't blame my wife for crying. Some have said how low that was, to me Cowards. Have I forgiven them? Sorta.

Now I d not wish my disease on my worst enemy. But what I do want them to feel is the emptiness I felt that day they did not come to visit me. Not the pain of a cluster headache because they wouldn't last 10 seconds. I do not need to name names. They know exactly who they are.

Some people know I'm sick, some knew I was having surgery. Those who don't know I'm sick, those I never kept in contact with in life or people that I just run into I am not upset with. People who were in my life weekly should have come to visit me and for whatever reason they did not. Cowards. Forgiven not forgotten. It hurt me far more deeply them they will ever know. Far more painful for years to come. Hard for me to ever trust  people like that ever again that close in my life.  I am not upset or bitter at people who never kept in contact with me over the years because how would they know I was sick let alone having brain surgery. But the ones in my life who I have done anything I could ever have done for them and given them the shirt off my back are no longer any part of my life.
They couldn't man up and come see me when I needed them the very most. Really to bad because 1 month later I got an infection at the pacemaker and almost died. They gave me 48 hours to live if I didn't have it removed.

The infection ran up my arm into my chest and was travelling to my brain. I woke up one Sunday heading to church and saw a hole in my chest where the pacemaker incision was and was leaking puss. I went to church and then went to the hospital. They admitted me immediately and my surgeon said we operate Tues am. We have to remove the pacemaker, lead wires to the electrode. It was like ground hog day all over again but 1 month later. I slept that night in ER because no beds were available. And the Tuesday surgery again.

Good grief. I was just starting to feel 5% better. Same feelings, same fears...something you do not get used to. So here I am....my 40th birthday laying in the hospital....April the 5th. Again, no friends. No cards. No happy birthday. No get well. Nothing. Only my family. That was the nail in the coffin for me. 25+ year friendships with these people gone. I went home after that 3rd surgery and re planned my life and the 4th surgery to re install the wires and pacemaker once again which didn't end up happening until the following September. The Secretary forgot about me and it was summer time when she finally called to get me back in. I requested that I enjoy my summer and anytime after September would be fine.

We were moving too and had to renovate so I needed that time to enjoy the summer and get projects done. I literally finished everything 2 days before my 4th brain surgery as well as deal with an abscess tooth that needed to be drained and fixed 2 days before surgery again.

Fast forward to today. I see my surgeon every 3 months for programming. At present somewhere near 2.5 volts firing at my brain. I have read online that there is new drugs that may help us but I made a promise to myself and my surgeon that through all of this we would give this surgery and programming a fair shake. A fair honest try for years to come until we get it right. So any drugs, trials for anything are off limits for me simply because it wouldn't give a fair reading to my logged headache history.  Sadly my migraines have become chronic again and my son is also dealing with chronic migraines and tension headaches as well. I pray he doesn't follow all of my foot steps with health.

I am using as much social media as I can to spread the word of Cluster Headaches. I been ridiculed by some telling em there is too many CH pages out there making it confusing and others have called me a"HERO". In answer to both those statements. I feel that until you  ask 1000 people at random what CH is and get 1000 correct answers than there can never be enough CH pages.  Right now ask 1000 people at random and you will get 1000 misinformed answers. As for the hero comments I receive daily. Thanks but I' am no hero. My wife and son are UNSUNG hero's who wake up constantly with out attacks, grab us meds at the drop of a hat, never complain going to work exhausted or just watch us Cluster Heads scream during attacks. Families and ones close to us are UNSUNG HERO'S. And then guys like Michael J.Fox and Terry Fox are hero's to me...Thank you, I appreciate it and I understand why you call me a hero because I advocate and put myself out there with my videos having attacks on YouTube. Really. I am just someone who has lost their vanity.

Because I had an attack at a car show/cruise night (car guy thing) in front of 500+ people. No one asked if I was OK. People just stared and watched me while I screamed in agony. After that day...I have no vanity. I initially made my first CH video for 5 or 6 people to show them what happens to me. It exploded to almost 1/4 MILLION views. I never thought it would happen. So I made more videos, then this blog and so on. I do this for all of you. If i help just one person a day. If I educate 1 person a day what CH is. That is my goal and mission. Makes me feel worthy.

Today. I still battle Chronic Cluster Headaches. Am I better? Yes but alot of factors come into play. Not working, having out own place, my wife has a great job, son is doing well and makes me proud. No douche bag fake friends to contend with. Making new friends and helping others. Alot has to do with looking outside the box. Living in the now and worry about my next attack when it happens. Having hope, faith and confidence that things will get better. Ridding myself of negative things, people, actions and thoughts help too. Being positive,loving life, knowing life is a gift plays a solid role in my life. Prayer helps too. I just try to live life the best I can how my life is. I piss poor broke. I wish I could work again and shake my head at the people who can work and bitch about it when Id trade shoes in a second with them to be able to work again. I miss not being able to have money for my hobby, my passion but such is life. You can take the Hot Rod away from me but certainly not Out Of Me. I just live my life best I can. Live and let live. I love my wife more than anything and my son with all my heart. I am just doing the best I can with what I have.

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