I woke up with a startle and it took me a few seconds just to register my sister's boyfriend's voice shouting my name,
"CHRIS! CHRIS MAN, GET UP! THE DOCTOR JUST CALLED THEY SAW SOMETHING ON YOUR X-RAY WE GOTTA GO NOW BRO!!!"
My heart dropped to my feet instantly because for the last five weeks I knew in my gut that something was wrong! I had to cry. Despite the panic and severity of the situation I had to take a few minutes to process exactly what was happening. I was going back into the hospital, and for an undetermined amount of time. As I have said before most would assume that by now, this would be second nature to me. However, I can confirm that each time is just as scary as the time before. With keys in hand, the car already pulled around to the side, and a small bag packed for me, I felt Joe's reassuring arm around my shoulder,
"You're gonna be OK man. Try to stay calm. Isabelle, Claude, Tara, and your mom are gonna be at the hospital and we are NOT leaving you. We're gonna take care of this I promise!"
I instantly felt reassured and stood up to face the inevitable. But still I could barely make out words as I spoke to my mom making my way to the car,
"Chris darling, listen to me ok...the doctors noticed a tiny hole at the base of your left lung. So they may need to put a little tube inside the chest to plug it until it heals. I need you to promise me you are going to stay calm. Listen, Claude and Tara are picking up Isabelle and we are ALL going to be with you. Just like we always do. You are going to pray, and take some nice slow deep breaths."
Hearing her voice made me feel so safe. I knew I was in for a very rough go of things but just knowing she would be at my side, going through ALL of it with me, was enough to make me not as scared anymore. Oddly enough the sun was shining and it was a beautiful day. Summer had just ended. Although still warm out, there was a tiny chill in the air to let you know fall had arrived. The leaves were barely starting to change color and the drive into the city was a peaceful one. Joe let me be in my zone as I tried to stop my mind from racing. I started to reflect on all the amazing memories speant with my family and friends. My fingers trembled as I dialed my brother-in-law Mark. Perfectly on the border of best friend and family, he would be the ONLY call I would make to notify my friends. I was feeling particularly emotional and vulnerable in that moment and one call was all I was prepared to handle. This call was still however far from easy. I cannot stress enough how much more it hurts, the more you love the person whom you have to deliver bad news too! I explained the deal to my buddy and felt both his pain and support through the phone. I later found out how many friends and family broke down as the news trickled down the social lines. One in a parking lot, locked in her car, sobbing in tears. I felt loved! I felt appreciated! More importantly I knew if God forbid anything were to happened to me I would be missed, and that feeling is undeniably beautiful!
Knowing he would not be with me I had to call my Dad. My parents are divorced and do not live together. Few words were spoken as the conversation was very emotional for both of us. Its been a while since I had last seen my Dad and I missed him. Time was continuing to pass and as a firm believer that NO DAY IS GUARANTEED it was hard not to be with him during this time. Reality hit hard again as Joe came running to the car with a wheel chair. The trip to the ER is not a short one and he ran me the whole way without hesitation. In that very moment Joe locked a place in my heart forever as he was literally running to save my life! The nurses were so attentive and sweet. I was taken in immediately and placed in Area D. The surgeons were ready and waiting since all the required pre-op testing had been done already just that morning. This was now my third trip to the emergency room in the last 5 weeks. Earlier that day I had gone in for a rib X-ray in order to rule out a rib fracture that was believed to have been caused by my fall in Atlantic City! Its almost better that things happened so quickly because for me, at least, the worst part is always the build up of anxiety. When push comes to shove I am always ready to go much like my sister-in-law Tara.
I was given some Morphine through my IV for pain and also to calm my nerves. The scariest part in all of this was that I was going to be awake and alert through the whole process. Chest tube insertion is not considered major surgery and due to the fact that it would actually take longer to put me to sleep than insert the tube it is performed right in the ER under local sedation!!! My heart started to race a bit as the surgeons began to sterilize the area and place their tools on my stomach. The tube seemed tiny enough and so I was not anticipating too much pain. The needle used to administer the lidocaine however was rather intense as is it needed to be able to puncture through my rib, deep down into the lung tissue. The thoracic surgeon performing the procedure was very intelligent but also very cool. He explained every step before he did it, and he made sure that I was completely comfortable the whole time. In fact, once my entire chest was numb the actual procedure was over before I knew it. Doctors were optimistic that this simple procedure should rectify the problem within just a few short days. I felt extremely relieved as I truly believed the worst was over. After waiting 6 months waiting for a heart this should be a walk in the park? With my pain under control the next few days were merely a waiting game. I spent a lot of time on my computer watching shows and movies. The doctors decided after 48 hours to pull my chest tube and afterwards observe me for a day or so just to make sure the hole in my lung was completely sealed. Removing the chest tube was almost worst than getting it put in. I felt it slither through my bones and rib cage like a python. After that, 2 days of good food, good rest, and a good chest x-ray was enough to send me on my way home. Mom and I were particularly thankful that our stay had been so short because in the last 23 years we had gone through so much worse. We laughed over dinner as we believed we had seriously dodged a bullet,
"Thank God it was just a small hole mom! But i knew something was up. The pain I was having was so intense the last few weeks. I just can't believe something so insignificant could be so painful. The fact that it wasn't being picked up on any X-rays started to make me feel crazy! I'm so glad it's all over..."
My best friend Crystal had been busy all week and decided to come stay the night so we could spend some quality time together. Situations like this can be a reminder to take advantage of every chance to spend with someone that you really care about. Before dosing off midway through a movie, we had a great night of laughs and gossip. She always brings such an intense euphoric energy into my life and that is why she is everything to me. The next morning, I clutched my chest as a piercing pain in my left lower lobe woke me from my sleep. Crystal was getting dressed already and nagging me about lunch. I sat up and tried to make sense of my pain. Could it just have been irritation at the site where my chest tube was placed? The pain subsided a bit but my mind was now riveted with paranoia. I convinced myself I was fine and we decided to go out for pizza. We made it halfway through our lunch before taking the famous race up the Palisades Parkway to the emergency room. The truth is that I knew from the second the pain seared through my lung, that things were MUCH MORE SERIOUS than we had all been deceived into thinking...
TO BE CONTINUED...
Sunday, September 30, 2012
PLEASE take a few minutes to check out my video and feel free to share with ANYONE and EVERYONE that you feel could benefit from its message. I think it is very important for us all to STOP and appreciate the lives and relationships we are blessed with, as well as the fact that we can overcome ANY obstacle that life may happen to throw our way. Thank you all very much once again and God Bless!!!
After surviving yet another difficult medical battle...I could NOT have done it alone without the support of my incredible family and friends. Thank you all so much! I love you ALL from the bottom of my heart! I WILL survive and conquer...that's a promise!
Tuesday, August 28, 2012
As the summer rapidly comes to a close, I can't help but sit and reflect on all the wonderful moments that were shared with my incredible family and friends. Just before memorial day, I was told the devastating news that ALL research and therapy supporting my condition has been abandoned. For the first time in my life, I had no choice but to face the fact, that the remainder of my existence is going to be a constant battle. My disease is progressive, and without a cure that only means things will continue to get worse. I sometimes worry about losing total function of my legs, or worse my neck and/or bladder. I worry about living my life confined to a bed relying on people to change both my TV channel and diaper bag. My hope is that people acknowledge my bravery while still remembering my fears and frustrations are very real to me. As the days go by, I notice a gradual decrease in my strength. I am working hard to maintain good nutritional habits. Constant physical therapy combined with daily stretching, help me to make improvements where I can. However, I have come to terms with the that fact that certain things aren't going to change. My friends wouldn't know it, but its still hard for me to even identify as handicapped. Somehow society has brainwashed me into fearing such a label. I believe it is largely because social networks have given me the displeasing privilege of seeing just how cruel some people can be. Images of people living with unfortunate illnesses and deformities are turned into complete and total mockery. Nowadays its not easy to have faith in this world. I sat in a 4x4 office with my mother, as "the guru" of neurology essentially shut out the light at the end of my proverbial tunnel. As difficult as this news was to grasp, I have come way too far in the game to admit defeat now. And I am here simply to spread that energy. I want to inspire hope in a world that is so quick to break you down! Thankfully I am surrounded by the most supportive and uplifting of people. My great friend Mark and I, made a promise that we would take full advantage of ANY and ALL opportunities that came our way this summer. And boy did we ever! Kicking things off with an impromptu trip to Miami, I can honestly say we certainly exceeded even our own expectations. The weeks were full of celebrating graduations, weddings, birthdays, road trips down the shore, gambling in Atlantic City, boat rides and clubbing in NYC, bar hopping, dinners, barbecues, swimming, house parties, breakups, makeups, and everything in between. Laughter was my number one objective and I made sure not to take anything too seriously. I ended every day extremely thankful to God for the many blessing I DO have despite my adversities. Two years ago, my brother Claude and I exchanged a tearful embrace celebrating his 25th birthday in an ICU bedroom, my health still undetermined at the time and hanging in the balance. Worrying that my little niece would be scared of me now being the "creepy man with a tube in his neck". And to think this summer I was able to hear my niece call me "Uncle" as she splashed around in the pool. I was able to stand tall next to my brother as his beautiful new wife made a birthday toast in his honor. I was surrounded by nothing but LOVE for the last 3 months and I truly believe it has added years to my life! I received an out pouring of support from various readers, and it has undoubtedly motivated me to push forward with working on my autobiography. With only TWO emergency trach changes, and a hair line fracture in my rib from taking a nasty fall in Atlantic City, i am quite proud to say this is one of the first summers that I've spent more time OUT of the hospital than IN! By now most of you know, my life is clearly not always fun and games. I face difficult challenges on a daily basis. Its not always so easy to push through the struggles, however I have truly learned that having a positive outlook can make all the difference in the world!
Wishing you ALL a very safe and happy day Labor Day weekend with family and close friends!
Tuesday, July 31, 2012
I usually know I'm due for my routine doctor's checkup when I start to have random panic attacks. They usually start with a slight tingle in the center of my palms. What comes next can only be described as LITERALLY FEELING LIKE I AM DYING!!!!! My heart starts to beat rapidly, thumping hard in my chest. My breathing begins to intensify, and I start to feel as if all the oxygen in the room is rapidly escaping somehow. My eyes shift in all directions as I scan the room in panic for a way to "make it stop!" Intense fear overcomes my entire body as I think to myself "is this it?!" The shear fact that I have asked myself this question countless times in my 29 years of existence is precisely why I appreciate my life so much! A constant reminder that not a day in this life is guaranteed. Since my illness began at such a young age and has gotten progressively worse over time, I live with the constant fear of getting hospitalized because something may be wrong. Although I don't consider myself to be a hypochondriac, I somehow convince myself I may be having a heart attack an average of three times a week. Fortunately I have perfected my skill of politely excusing myself to the restroom so I may stare into the mirror, taking deep breaths, and perhaps splash cold water over my face. Once I regain composure I am able to return to the general crowd as if nothing ever happened. The ones closest to me always seem to know as we exchange a reassuring glance, a way of communicating without words. All it takes is a quick wink from my sister-in-law to makes me feel so safe in an instant. I was particularly nervous last Thursday morning as my mother and I did the usual trek across the GWB (George Washington Bridge). I knew we had a long day of testing ahead of us as I suddenly realized it had been almost 6 months since my last visit. Standard procedure would include, EKG, Xray, Echo, Bloodwork, and Allomap (special new bloodtest used to detect early organ rejection). On average, transplant patients as far out as I am (time since surgery) need regular checkups/heart biopsies every 4 months give or take depending on the patient. During these heart biopsies, a small incision is made in the major artery of my neck and a tiny clip wire is strung down the artery straight through to my heart and tiny pieces are snipped and tested for rejection cells. I had this procedure performed twice a week, Mondays and Fridays, in the weeks directly following my heart transplants. And yes...I am awake the entire time! My stomach was twisted in knots as we turned into the circular drop off zone of New York Presbyterian, but loosened a bit with a friendly "Good Morning" from the sweet valet attendant. Im not sure I know anybody that enjoys going to the hospital and so this slight gesture of warmth and kindness certainly makes all the difference in the world. When you've been to the hospital as much as I have, everyone from the cleaning lady to the heart surgeon is like a piece of your "family". Security guards confirm my identity by checking my license, however this is simply a formality as we have known them for over 8 years now. Stepping into the elevator I was greeted with another friendly familiar face, Dr. Linda Adonizio. Surely if God had a presence on earth it would be that woman! Among countless others, she has been an incredible physician and instrument of support who brought a glimmer of light into my life as darkness tried to overtake my existence. It was only a matter of seconds before she whisked off onto the 2nd floor to start a surely busy day but it was just enough time for me to be reassured that the day was going to be GREAT. 4th Floor, 1st room on the left was our stop. The transplant secretary, Laura is always welcoming and does her best to make my day as quick and easy as possible. I love her for that! I was handed a med sheet and placed in an exam room. Being the busy woman that she is, mom takes this time to make a few important calls as we wait patiently for the doctor. The physician's assistant walks in and takes my height, weight, blood pressure, and confirms my medication list. Even after all these years my list of meds still amazes me. This is probably because medication compliance is my number one priority in staying alive! Taking meds late or missing doses entirely can cause immediate and severe stages of organ rejection. For those interested, I plan to reveal how I painfully had to learn that lesson the hard way in my upcoming autobiography. I sat back down on the exam table disappointed as I realized I was down in weight since my last visit. Sometimes deep down you know you have to change patterns in your life and it definitely sucks when you have to finally face that reality. I get really hard on myself at times because I know people look to me as an example of strength and simply want the best for me and so I do not like to let life's struggles get the upper hand on me. I knew I have been slacking on nutrition the last couple months and the numbers clearly proved it. After a few more minutes of waiting, Dr. Latif's warm yet confident presence interrupts my rambling paranoid thoughts. Dr. Latif is an incredibly intelligent and thorough physician. No matter how difficult the situation, I am always confident in her decisions. I never feel rushed during our visits, and there is no doubt in my mind that she has only my best interest at heart! Our relationship as Doctor and patient has grown quite strong over the years as she is a direct result of why I am still alive to this day. As much as I try, the reality is that there are no words to express my deep appreciation for what Dr.Latif has done for me over the years as my cardiologist! She was forced to make difficult decisions and at times was even willing to risk my approval or "liking her" to do the right thing in order to save my life. I believe this to be the true definition of professionalism and compassion. At this stage, I honestly have no idea what the rest of my life has in store for me. I would be lying to tell you that this very notion does not terrify me. However, with people like Dr. Latif in my corner at least I know I have a fighting chance! As I left our visit I felt empowered and ready to continue my fight. My doctor had answered all my questions and provided me with new techniques and strategies to tackle the obstacles I am currently facing. She gave me a plan to improve the quality of my life until our next visit. But MOST important she gave me her time and attention. And sometimes that means more than all the rest.
A special THANK YOU to all involved in my care over the many years! A piece of my heart beats today for EACH and EVERY one of you. God Bless You ALL!
Monday, July 16, 2012
I really don't understand my life sometimes! On one hand, I feel like my physical body is falling apart at a strangely undetermined rate, and that certain of my muscles have atrophied to a point beyond return. It also seems like I can't go ten steps without needing my suction machine! (In the past I would probably refer to it as "my damn suction machine" but I have since decided that there is no sense in "damning" things that are vital to my existence. While it may be a major pain in my ass, the shear truth of the matter is that "damn thing" keeps me alive.) As if it isn't enough to have a plastic tube lodged into my throat, my body still recognizes it as foreign substance and feels the need to remind me of this by producing secretions that continually obstruct my airway. Being on the topic of foreign bodies, we may as well include my heart and kidney on the list. Because of that fact, I take 12 pills a day in order to keep my body from rejecting my organs. This keeps my immune system very low, and so I am forced to stay far away from anyone carrying any type of infection!!! Even the slightest cold could turn into a vicious case of pneumonia resulting in 1 week in the hospital, 10 days of antibiotics, injections, xrays, EKGs, more xrays, weight loss, pain, nausea, etc. Im not bitter, just careful! Watching me walk up a flight of stairs has become far from glamorous, and so I prefer to let people go ahead of me and take my time without any added pressure. Physical therapy 3 times a week. Hospital visits every 4 months with random emergency visits. (JUST to make life interesting for my Dad ;). Nutrition maintenance. And then most importantly just being the personality that is CHRISTOPHE, haha. It's all hard work and I would be lying if I said, "it didn't wear on me every now and again." However, the morning of my 29th birthday I felt extremely happy and fortunate! Waking up and just to be well and in my own bed is enough for me! Too many people take that for granted. As you all know, one week ago I unexpectedly had an Emergency Trach Change!Thankfully that was all taken care of and my neck is no longer sore. On Thursday night, I enjoyed a delectable dinner at the Bouwerie with my immediate family. Being a local restaurant owned and run by two very close friends of mine, the mixture of savory food, endearing company, and hospitable service was enough for me to happily end my birthday festivities right then and there. However as I walked up the pathway to my backyard last Friday night I could feel my heart race with excitement. I seriously felt like a little kid again. Next to Christmas, Halloween is my favorite holiday. And in true Christophe fashion, I love to celebrate BIG! I love it so much so, that my friends and I have started a tradition every year of throwing a Halloween party in July aka July-O-Ween! A severely burned and oddly disfigured doll stabbed onto the fence made me chuckle to myself because clearly this was the affecionate handiwork of my brother-in-law. Every item had a personal touch and I could truly feel all the love and effort that was put into this celebration! I am so thankful for all the wonderful people I have in my life! Its something very special when I can look into the eyes of a close friend and feel their love deep in the pit of my stomach. My throat swells up to the point of pushing out my trach and my face instantly gets ugly as I start to cry haha. Completely caught off guard, this happened to me several times on Friday night. When you truly UNDERSTAND and ACCEPT that life is not guaranteed, daily interactions hold so much more meaning. I know that not ONE day in my life is guaranteed, and therefore I believe surviving an entire year is definitely something worth celebrating. It is important to take in the fact that anything can happen at any moment. This is not to say that people should always have over the top parties, as I often tend to do hehe, but simply celebrate life on your birthday the best way you know how! Many people asked me, "so how does it feel to be 29?" And to each one I replied, "GREAT!" I have big plans for myself before I turn 30 and I am working hard to fulfill them. At the same time, I try not to be to hard on myself if things don't work out as quickly as expected. I generally find that how people feel about their age is reflected by where they are in life. If certain goals are met, then people tend to be more accepting of their age. Speaking to my Dad, he explained to me that it seemed that just not too long ago he was turning 30. And this is why I can't stress enough the importance of living in the moment so life doesn't just pass you by. For the first time in a long time my birthday was ALL ABOUT ME...and I loved every minute. Normally when I throw a party, I spend the day running around like a chicken without a head making sure everything is in order. This year however I was able to sit back and relax. I was told all I had to do was show up. It was simply amazing! My family and friends went above and beyond my expectations and did anything and everything to make me feel loved and appreciated. It is because of this that whenever God should decide my time is up, I will surely go a happy man. Thank you ALL for that!
***A Special Thank You Again to my sisters, Isabelle and Tara for all their hard work in putting the party together! My hat goes off... Claude, Joe, Mark, Dave, Cait, Eleni, Tina, Elsy love u guys!***
Monday, July 9, 2012
VIDEO OF AN ACTUAL TRACH CHANGE I HAD DONE!!
***THE FOLLOWING CONTAINS SCENES THAT ARE GRAPHIC and EXPLICIT IN****** **********NATURE!!! VIEWER DISCRETION IS ADVISED************
Tuesday, July 3, 2012
YOLO (You Only Live Once)! The very phrase is probably the basis of my entire existence. It is a constant reminder to cherish every breath and moment as if it were my last. A reminder not to sweat the little stuff and always go BIG or GO HOME! However, somewhere along the line I feel that society has managed to take this beautifully inspiring concept and twist it into an excuse to behave like an ignorant ASS! It has corrupted our youth into thinking that no matter how ridiculous your actions, shouting a loud and proud "YOLO" afterwards is enough to justify them. My hope is that anyone reading this will realize that only living once should motivate you to be the BEST PERSON YOU CAN BE! It shouldn't justify you being at your worst. Don't take things or people in your life for granted! Instead think about the fact that your parents won't be around forever. Spend time with them. Give them a break from time to time because in the end, all they want is the best for you. Surround yourself with positive friends that make you laugh. Don't be afraid to be silly and let loose every now and again. A big thing for me is to try to mend any bad or broken relationships! I don't like conflict. Not to say things will ever be the same again, but at least we can be civil and in a good space. I find one of the worst things in life is regret. I also think it is very important to spend time with myself. Some of my favorite times have been laughing to myself while watching Heavyweights, or any other classic comedy. Live life to the fullest, take chances, say yes to something daring, take vacations. Your entire world can flip upside down at any second. Life isn't always going to be pleasant as I can remind you first hand, lol. And remember, it is perfectly healthy to be angry and sad. After sufficient time, however, I always make sure to do things to lift myself up and slowly get back to a happy state of mind. When your mind and core are pure you can persevere through anything. All i'm saying is don't walk around lowering yourself with "YOLO" as your security blanket. Love yourself! If no one else, YOU should be proud of the person you are and make positive choices to reflect that. Wishing you ALL a very safe and happy July 4th with wonderful family and good friends!
Monday, July 2, 2012
Its such a strange feeling when you believe you can do something in your mind but your body proves completely otherwise. Sometimes i have dreams of myself running miles, or hiking up a cliff. My sister will often joke about me wanting to do something that most people try to avoid. It's funny the way one's mindset can change when no longer capable of carrying out certain actions. Why is it that somehow life has a way of making what we cannot have so irresistibly appealing?! I'm not a particularly large water drinker, but when I was on dialysis and fluid restrictions, it was all I could think about! Now, I'd give anything to run again, feel my adrenaline rush as my feet hit the ground. I miss swimming too. Wading around in the shallow end of a pool is nice but every now and again I get the sudden urge to do a triple summersault into a backwards swan dive! I can see her face now LOL! My sister is also usually the one to bring me back to reality and remind me that at no point in my life was I, or aspired to be, a professional diver. That is one dream I can probably live without. Its good to be grounded and realistic. Live within your means. But at the same time don't limit your goals or life expectations. I am a dreamer. I always have been. Any of my close friends can atest to the fact that I have quite a wild imagination. I consider this to be one of my positive qualities because these dreams are what motivate me to push myself everyday. That being said, by no means is it easy. I try to avoid stairs at any and all costs and I get out of breath when I walk long distances. Some days i'm just not in the mood to "deal with it all". But somehow I do. I spend time thinking about the things that mean the most to me. The things that make me really happy. I make an effort not to live in the past or look too far ahead into the future. I live in the moment and count my blessings no matter how few they are. It really doesn't take much to change your whole outlook for the day. Go outside, disconnect, meditate, read, watch a childhood cartoon or movie, eat something you LOVE! Sometimes its something as simple as cuddling with my pup Brandi. In life, no matter how ugly things get, you can always find the beauty...you just have to know where to look!
Sunday, July 1, 2012
I woke up today feeling really great! I had my second radio interview last week Monday night with "The Chris Hughes Show" @MTRradio.com. It went really well and the response has been unbelievable. The entire experience is quite surreal as I can finally start to see my purpose in life unfold before me. The lightbulb has finally gone off Dad! I feel motivated now, more than ever before! I can't wait to affect the lives of people all over the world. I am working hard to set up a foundation and fundraiser to further awareness for my condition: Myofribullar Myopathy! I am also working on a motivational autobiopgraphy! I am ready for the next chapter of my life and my intentions are simply to GIVE BACK! I find so much gratification in making other people happy. Some may call me a pushover, or say that i'm too nice, but I really just can't help that. Its just a part of my personality. This is not to say that I am perfect by any means. We all have our flaws, however, it is our ability to recognize and identify them which distinguishes us among each other. I always seem to get so nervous right before doing any kind of public speaking or entertainment. But once i get started all the butterflies go away and a more confident Christophe takes over. Monday night was no different. To make matters worse I realized I had left my red plug somewhere at home which made me really anxious. Although I don't use it nearly as much as i should, I prefer to have it on in public because I feel that it lowers the discomfort factor. It seems that when I don't have my plug and use my finger to cover my trachea to talk, people are more inclined to make faces and or ask questions. I've grown accustomed to both and neither bother me. I welcome questions because it gives me a chance to show life from my viewpoint and shed some light on my condition. Amazingly enough I find that within just a few minutes my story manages to touch people on a deep level. It is still strange for me because even though I have dealt with illness since my childhood i am no longer shocked by my extensive medical resume. In recent months, I have decided to make a conscious effort to be aware of my condition without letting it get me down. To be grateful and count my many blessing and realizing that situations could always be worse. Wise words a very good friend always used to remind me. The phrase is seemingly so cliche, yet holds so much power to keep people's thoughts in perspective on a daily basis!
Thursday, June 28, 2012
Last night I gathered the courage to sift through my most recent hospital journals and came across some very interesting entries. This particular entry struck me in particular because I can vividly remember how i felt the exact moment I wrote it!
[3 Days after tracheostomy: Written conversation to Psychiatrist]
"I feel like I'm losing my mind! Please make it stop! The voices in my head tell me crazy and scary things. I am afraid to go to sleep at night and I can't decipher whether I am awake or dreaming. I was having a lot of pain over the weekend but it is better today. I was having a large amount of secretions and so every time they had to suction, it would irritate the stoma site (the opening to my trachea) and cause it to bleed. Fortunately they haven't had to suction much at all today. I was having pain in my ankles and legs the last couple of days but now that I am out of bed that has been better as well. My physical therapist is very pleased with my progress. I could have done more but he did not want to push me because it was my first time out. Sometimes I get very nervous and feel like I need to go back on the ventilator because I am short of breath. Being out of bed has helped with that as well. Walking really helped today. Some days I feel like I'm stuck in prison! I just want to get out, feel the fresh air, eat a slice of PIZZA! My numbers look good, but being tied down to the bed and stuck in this room with all the IVs and stuff is starting to make me feel insane!"
Doctors had then predicted that I would need 24/7 in home nursing care for the remainder of my life. If only they could see me now, haha! This is certainly not the first time doctors have told me that I defy the laws of medicine, lol. I have overcome many obstacles since that time both mentally and physically. It was not an easy journey but I took small steps, one day at a time. At that point it seemed as if there was no end in sight. And somehow here i sit, nearly two full years later, with a contented smile on my face. I have won again! ;)