Tuesday, September 27, 2011

Where's my motivation

Today, is much like any normal day for me. I woke up and showered, took my medication, had a visit with a nurse to check on the way I was administering my injections and she gave me a few tips on ways I can do it. Fixed myself some breakfast, some eggs scrambled with onions, peppers, mushrooms, and beef sausage. Packed my girlfriends lunch, with one of my famous salads, some craisins, and granola bars. I forgot the fruit, but I'll get her to eat some when she gets home. Give her a kiss as she leaves to start her day. Then just sat on the couch for a couple of hours in silence, and just thought about things. As, I sat on he couch I started to feel a little nausea, a slight headache, and some fatigue. But, it quickly passes. Then, I thought, I should find something to do.  I'm actually trying to find some motivation to go to the gym and workout a little. But, would rather just lay down.
I don't know if this is apart of my condition or not, but sometimes there's no motivation. I see things that I want to do, or even need to. I think about it, but rather lay down, and rest. I feel that mentally this thing can effect me as well, so I try to stay happy and upbeat about things. I try to read about Acromegaly as much as I can, but there's not not a lot of info, and sometime gets a little frustrating. Everything seems to tell you the negative, all the stuff that happens to you as a result of having it. And I'm not really sure what I'm looking for when reading everything. I know, I would like to know if there things I could do on my own to prevent certain complications from happening. Or even a what age or stage can I expect to see certain complications take place. The info, makes it seem like, this is what happens, and that it. It can be that simple, nothing is.

Let's discuss the idea of "Perspective," many of us use the term perspective in the context of, "one's point of view, the choice of context for opinions, beliefs, and experiences." And I believe to see another person's perspective on things, you must learn to separate from one's self at least for a moment. Just long enough to Look outside of yourself and abandon your own understanding and thoughts on a particular subject or event, and try to understand all the dynamics that influences another persons perspective. Hopefully, that made since. Now, my perspective on my life has been one of hard lessons.  But, I learned a lot.  You see, growning up tall and big,  that in itself brought on a level of understanding and responsibility. Then there's  growing up poor, which brought another level of dealing with the things in life that made no sense, like why I have to do without and someone else has plenty and does not appreciate it.  Or, things that don't seem to be fair, like working  extremely hard, and staying stagnant and the guy who hardly works gets the promotion. Sometimes, questioning the very idea of integrity.  Then there's my condition, I've felt so bad for so long, that it felt normal to me. Can you imagine having a perpetual headache, always feeling tired and run down, weight fluctuating, your concentration level almost non existing,  and I learned to cope and function inspite of that .  Now, as I am constantly required to look outside myself, and realize that it not all about me. I had to learn that it will be a rare thing for someone to do that for me. So, in turn I knew that my survival in this world was one where I had to require less. Which left me feeling lonely and misunderstood. I guess that a condition like Acromegaly was fitting. The support group that I turn to for answer call it a disease of loneliness, or being alone, an orphans disease. Which make since, since all my so-called friends don't check up on me anymore and I spend more and more time by myself. There has been some days where I've sat alone for hours, in a room, with no tv or radio on. In complete silence, and not have said a word. Just reflecting on my life and how things have change, and how to change thing for the better. Can you imagine, no human contact, no one to talk to, just you by yourself.  And as I learn more and more about this condition, like that my life span might be decreased by 10-15 years, and the uncertainty of what that actually means. I have little to no one to share that with. I'm currently 33 years old, what if I was on to live to 60, but with Acromegaly, that has been cut to 45 years old. I have no one to really talk about that with. And that doesn't give me much time to deal with everything thats going to happen in between here and then. But, where are my so called friends. The one's who claimed that we are family, the one's who have their children calling me uncle Oates. I could die tomorrow and they wouldnt know. And then I think about how they would act, once I was dead. would they pretend like thy knew me, or knew what I wanted. Cause they don't! Would anyone outside of my girlfriend and her family, my mother, sister and her two children care. Would they show respect to the people that really knew, and who were really here for me? I wonder, I hope they would. You see, my perspective is that I really have no close friends, except my girfriend Martinique Patryce Revels-Williams.
Wow, things change....



Friday, September 23, 2011

My inspiration for today

<p>So, I'm waiting for the bus and there are two men having a conversation in Spanish. I think nothing of it, my concern is the heat, the bugs, and the hope that the bus will soon come. One of the gentlemen hard the other some change, and he quickly scampers off and leaves the others sitting there.
After a brief moment of silence, he turns to me and states, " he has a hangover," followed by a small chuckle. He then explains, that he doesn't miss those days, with a look of relieve.  When I looked at him, I seen a lot of peace in the man. Then he tells me how he too had a drinking problem. The man explains to me how it all began... It was so easy, it could happen to any of us. He said that he was off on Friday, Saturday, and Sunday. Pay day was Thursday, and right next door to his home was the liquor store. He began with a six pack of beer, when he was done with that he went back for a twelve pack. He drank all weekend, and slowly began to need it.  He would progress, he began buying enough two have the next  morning for his hangovers, he would drink a few and start to feel better. The problem with that, is that once he felt better, he would continue to drink and start the cycle all over again.
The man, calmly pulled out of he pocket a scratch ticket and a quarter, and with a slight smirk, he started to gentle scratch his ticket and explain how his drinking effected the rest of his life. He talked about how he would be drunk all the time, and couldn't function properly. He would go on tyrants, yelling,cussing, and lord know what to his wife. His whole life aS based off of his next drink.
Until one day, he woke up with his usual hangover. He began to think about things and said to himself that he was tired. He was tired of the same old rut, he couldn't do it anymore. And from that moment he just stop drinking. He no desire to, and his life is much better know.
That just tells me that no matter how hard things get, it can always get better. It is all about what you want, when you really break it down. And when you decide to change or go for something better, don't look back in sorrow and regret. But, look back to know how for you came and what you were able to over come. Wow!
Peace!

Wednesday, September 21, 2011

isn't it ironic

So, one of my biggest issue, is my blood pressure. My doctor is constantly monitoring me and my pressures. There's been sometimes where my blood pressure has been so high that, my doctor said I was in danger of having a stroke. Then what comes with it, is chest pain, or tightness in the chest, dizziness, headaches, and fatigue. And when I seen the cardiac doctor, he performed a stress test and eckocardiogram (I hope I said that right) , chest x-ray, and blood work to check my cardiac enzymes, all negative. My Endo doctor thinks that its caused by my acromegaly. And today, my doctor put me on another medication for my blood pressure called Hydrochlorothiazide. I know I know, that word is a monster to say. Just say HCTZ, it rolls of the tongue a lot better. But, anyway, the panthlet for this med says that it is for lowering blood pressure to prevent strokes, heart attacks, and kidney problems.  Now, this med has some no so pleasant side effects. Like, upset stomach, dizziness, lightheadedness headaches, and eye pain. This pill is a diuretic, and the last few days I've been feeling a little bloated, so I thought it could help. Maybe, I could drop some water weight, and maybe get that six-pack I've been working so hard for... But, so far all I got was dizziness, nausea, a headache, and the worse eye pain ever. The most ironic thing about it, is while experiencing all this discomfort, I spoke to some of my little cousins/god children about being healthy. So, I'm teaching them about building up your immune system to fight off sickness and the how choices you make about your health can keep you from getting sick and could make you feel better about yourself. Telling them why you should drink plenty of water and eat all your vegetables. I even tried to relate it to things that that could understand. The little girl is always concerned about her appearance, so I told how drinking water can keep her skin healthy and clear. and the little boy, I related the vegetables with each super hero, like superman eats his carrots that's why he has super vision. All the while, I trying not to show how crummy I felt. I think they got the point.
But, I realize that there's more that I could be doing, and I've relaxed of my heath regiment. I don't want to loose site of my fitness and health goals, and that's something that makes me feel good about myself. That seems to be an issue I find with a lot of people including myself. When we do feel good we hide inside our homes and feel sorry for ourselves. But, what we really need is to find our "happy place," what really makes us happy! Leave the self destructive behavior alone. Go for a walk, ride a bike, go dancing, write a love poem. Find an outlet, rediscover an old hobby, or even a new one.
peace

Monday, September 19, 2011

Thank you

I believe in conformations. And when I started this blog, it was just way to get my feelings out because I felt lonely, and didn't think there was anyone who could relate. And The last post, I thought that this is me, this is who I am, and I need to come to grips with that. I can't be afraid of that, so sharing this with you was the first step in this process.
I got such a positive response, and found that I'm not alone. There is people who can related to me and so I surely can relate to someone else. To me that was conformation, that this is the right thing to do. That was my conformation, so stay tune for more blogging to come and thank you all again.

thank you all, God bless and good night

can I share with you something?

I'm reminded of a short story i read as a child, the story told of a man who went blind. A talented man who did not take advantage of his talents and artistic abilities. The talk of forgetting what the sky look like, or what shade of green were the trees. Basically not paying any attention to the world around, and now that he is blind its two late. This man related his blindness to the parable about the talents, you see, in the parable, a man is going away and sommons his most trusted slaves. He gives the first slave 5 talents, the next slave 2 talents, and the last slave 1 talent. Each according to their abilities.The one he gave 5, went to work right away, and double the value of his money, and the other who recieved 2 talents did the same and gain 2 more. But, the slave who have recieved one talent dugg a whole in the ground and hide the talent. When the master returnd, the slave with 5 talents brought him ten nd he was rewarded with many thing and was able to enter into the masters house, the slave that had 2 talents brought the master 2 more, and was rewarded with many things and was allowed to enter into the masters house.But, the slave that had one talent told the master that because you are hard man, who reap where you do not sow I was afriad and barried your money so that your one is safe and you get back what is your. The master called him evil and lazy and threw him out, then gave his talent to the one who had 10. he then, believed that the moral of the story was, do not hide your talents. Don't be affraid to share them with the world, you don't know what rewards may await you.
I thought of this, because, i always became the blind man in a sense. I surely went a form of depression when my dream of playing basketball wasnt a realllity, and began drinking and smoking and not caring about myself. I, later tried to correct these behaaviors, but as you know some habit die hard and real hard. so smoking cigars and sometime weed was the hardiest thing to shake. I finally, shook the week but still had a problem with the cigars. And I was smoking black 'n' mild's like they were cigarettes. It was a really bad habit, i could remenber saying to myself that I wasn't goign to smoke today, and before I knew it I went to the store and was half way through one cigar before I realized that I was smoking.
I began to not enjoy life, caus eeverything was based around me smoking. But, it's funny how things work. I wrote down some goal for myself and the first was to stop smoking, and immediately afer that, I hurt my back at work. So, when  went to the doctor I had really high blood pressure, I got really sick. I began to have heart problems, I had to were a heart monitor. My doctor wanted to know why I was having these issues, and all my test were negative, my heart was fine, my kidney's were fine, and my liver was fine. Then he found that my  body was producing an excessive amount of grown hermone. So he order x-rays, cat scans, and mri's. And there it was the tumor.
So, the got a great team of doctors together, created a plan. Now, it turned out that I was living with  lot for years, that made me misserable, and I didnt know that I was misserable. So, I need two surgeries, one two fix my nose and clean out an infection that also was threatening my survival, and the other two remove this tumor. They performed the first surgery and it was a success. But, one night, while awaiting for the day of my secound surger, I woke up in the middle of the night, with a mouth full, choking on my own blood. I was bleen and my girlfriend, who was there through everything and did not leave my side. rushed me to the emergency room where I bled for 3 hour as the worked to stop it. the doctors, nurses, and tech all hovered around me shoving things in my nose. I thought that I was going to bleed to death, and I was misserable in a lot of pain, and wanted to go to sleep.
I was taken in to the operating room for emergency surgery to stop the bleeding. and then a week later I had the tumor removal surgery. Later, I determined that I needed to make some lifestyle changes, and my motivation was living. I could go back to smoking blunts, and drinking all kinds of alcohol and die. Or, I could take care of myself and live. So, in doing so I rediscovered the world. I could hear he birds singing again, smell the fresh air, and see all the beautiful shades of green that the trees are. I can be the more cause I'm no longer hiding my talents.
Peace

Sunday, September 18, 2011

something i thought about today

I was just thinking today, about this thing called Acromegaly, and how its effected my life. For example, Im 6 foot and 11 inches, and weigh 331lbs. My bones are twice the thickness and density than a normal human being, my heart and other organs are also bigger than normal, doctor says that if it were for the Acromegaly, i would be smaller. Now, if you look at the men in my family, I would probably be somewhere around 5 foot 8 inches. I would probably weight like 140 to 150lbs. Then all my life I would  hear the questions, like, "how did you get so tall?" Then there 's the question," are your parents tall?" or,"your a Giant!" And there's many more.
I use to make up stories of fancy to entertain the curiosity of others, tell them I'm from another planet, the planet Luvtron! And because of turmoil on my planet, my mother put me into a capsol and sent me to earth. There I landed in the back yard of who is now my mother, who took me in and raise me as her own. That was my favorite story. And then there was the things that went with being a big kid, like, other kids parents not wanting me to play with there children for fear that I might hurt them. Then, if a group of kids and I got in trouble, I would get in more trouble than the rest. And the adult doing the scalding would utter the phrase,"your too big and should know better!" I learn humility at a early age, cause I was always reminded that, "just cause your big, don't mean anything." And was groomed to protect everyone around me, cause if someone got in trouble it was my fault, and if someone go hurt it was also my fault...  All because of my size. Playing with other kids I was always "it" first cause I was the biggest, and when being served food and treats I was last because I was the biggest. So, I also learned patients.
Then when I began to play sports,  my size became a blessing. Everyone one wanted me on their team. I knew I would get picked first, so I didn't try to stand out, like the rest of the kids. I was able to travel the country, and got an education form it. Made a lot of friends and connections. Later in life, it was found that I have Acromegaly, and that the reason for my stature which brought me all these things and made me into the person I am. But, also made me sick! And began to effect my body, lifestyle, and how I live my life in different ways. And now because I know what this condition has done to me, I cant help think about that when I hear those same questions. Like when people ask me"how did you get so big?" I say," I don't know, I'm lucky I guess," but in the back of my mind I'm thinking that I had a tumor in my head that caused my body to grow, and that how I got so big. Or, "your a giant!" well, technically I am a pituitary giant. But, can't say that either. I have to humble them along with myself
I admire my size, and think that it's a blessing from God, this condition is rare, so rare, that only 6 in 100,00 people have it. Or something like that. So, I feel that that makes me rare and special. I refuse to call it a disease, as the doctor do and I'm going to refer to it as a gift. A gift that will take sometime to adjust too, and figure out how to live with and remember the good it has brought me, and the things that have yet to come.
Peace

Saturday, September 17, 2011

the roughiest day so far

So, it's going on three weeks since I started this new medicine for my acromegaly.  Its been getting increasing harder everyday to take this medication, you see, the medication is an injection. And I was embarrassed about it at first, cause I have to give it to myself once a day in the butt. But, now I could care less what anyone thinks, cause going through that everyday day, and that's how my day starts, is unexplainable. Some days I'm miserable, then there's the side effects. take yesterday, the injection was so painful that I wanted to cry. And I'm 6 foot 11 inches, can you imagine my big ass crying. But,  I almost could bare it. I don't know if I ever experienced that kind of pain before. So for the rest of the day, my injection site hurt, and I have a hard bump there. My stomach hurt all day, it was in knots, sometimes pain and sometimes nausea. I could feel it twisting and turning, or sharp pains, as if, someone was stabbing me.Then I had this headache, it was a dull pain that just lingered.my joints were sore and hurt, right around my ankles. I mean, it was a really rough day. This random person told me i was walking like i was carrying the world on my shoulders, and that's exactly how I felt. I was moody, and irritated.

Wednesday, September 7, 2011

I think about my life and where I came from, and where I'm am now. And I find it amazing the things that I were a costume to and the things I now have to become a costume to. My doctor just prescribed and new medication for me, called  somatostatin. it's now part of my morning routine to wake up every morning and inject myself with a needle to give myself medication. and this is just a trial, he may have to adjust it, i could possibly have to do that every 8 hours.  I can't help think im a punk, cause of people out there with diseases like aides and cancer who may have to do worst, or more. And at the same time, i wonder if i haven't came to grips with my own disease and its actually worst that I'm giving it credit. I mean, this is for the rest of my life, and its not debilitating yet, but can be, and could possibly cut my life short by 10-15 years. I'm not sure, but, I think it can affect the my ability to have kids and if I have children, I could pass it on to them.

I have a lot to think about, and a lot of adjusting to. I don't really have anyone to talk to about this, and don't know anyone going through the same thing that could even relate to me. its like I'm alone, and lonely sometimes. i try to find positives in this disease, things that my make it easier to cope with. I mean, its a rare disease, so that make me rare. i don't know.....

Friday, September 2, 2011

1st entry

So, I'm starting to recognize that I'm not normal and never will be. I've always been a large man, i stand 6, 11" and weight 331lbs. and yes i did play basketball, for the university of Massachusetts. as a kid i thought that was what i was going to do for the rest of my life, and maybe i would've, but at the age of 25, i had this idea that maybe basketball wasn't my calling, and chose to pursue a medical career. Now, it seemed that Id found my knack. I'm good at what i do, and i have to passions for it. but, at times i have to admit that i feel stagnate, and under appreciated, you see, i planned on being in medical school right now, but paying for school out of pocket make it hard, having to work 48 and 50 hours a week makes it even harder, and then there a new discovery that occur last year, that brought everything to a screeching Holt. you see, i was diagnose with a rare disease called acromegaly. this is a condition where a tumor develops on the pituitary gland that is located at the base of the brain. this tumor is not cancerous, it cause you pituitary gland to make more growth hormone, which make you grow taller and bigger. sometimes, when I'm out in public, and people ask me," how did you get so tall," in my Arnold voice, I want to say," it was a tumor." sorry, bad humor......
so, on November 1st, i had brain surgery to have the tumor removed. and i thought everything thing was great. I thought. you see this new information about my health, i had to make some changes within my self. and in doing so, i lost a lot of friends, and life began kind of lonely for me. there was no one around with whom i can share things with and have them relate to it. many people try, and applaud them for it, but for the most part its better to just to keep thing to myself. A couple of changes where with my health. I used to smoke cigars on a regular basis, and found that i could no longer enjoy a fine cigar, not if I want to live. i had to change eating habits, and start going to the gym. the sad thing about that, I lost friends over that. I guess that, since i no longer wanted to participate in self destructive activities then i was no longer fun to around. And with this discovery thing hat i already knew became more apparent and a little frustrating. i was online looking for people just like me, people whom i could relate to, and i found one support group and they shard a lot of good info, but none of them looked like me, and they also had an online store, and non of their clothing fit me except a t-shirt. that really hurt my feelings.
Now, i just met with one of my doctors and he told me that this disease is coming back, now i read up on Acromegaly or giganticism everyday, and kind of figured it would. but, to actually have someone tell you that you have this rare disease to your face is another thing all in its self. this disease is so rare that theres not even a clear cut procedure in treating it, theres a lack of info on the subject, i just know that whoever has it has it for life.