06 mai 2008

My Grandma what an un-socialized nation you have!

I must admit that I am a Michael Moore fan. I know that he makes a lot of Americans angry. If the shoe fits may I suggest wearing it? After all is their a point in being angry about something you can’t change or you don’t find offense to because it directly affects you?

Tonight my housemate and I sat together and watched the movie Sicko (made by Michael Moore). As we sat down to watch it I warned him that usually movies made by Michael Moore make me angry. Not in the violent OMG I just wanna hit something way but in the true blindness of society in regards in injustice one.

In 2001 I was diagnosed with breast cancer, two weeks before my birthday. Living in this great land of America I was able to find a doctor who was willing to treat me. Oh wait, no I didn’t! I was told by doctor after doctor that they wouldn’t treat a male. I was finally referred to the public hospital…The Avon-Grady Comprehensive Breast Clinic. Well I figured that even though it was located at a state hospital it would have excellent treatment since it was primarily private funded. I was right! But the excellent treatment alternatives were not given to men with breast cancer. Why you ask? Simply for the reason that “Avon is a company for women…by women.” They could essentially decide who they were going to treat and not. I was never refused treatment, but I was not given the best treatment possible because of my sex.

In 2003 when I was diagnosed AGAIN with stage 2 Invasive Ductal Carcinoma of the left breast there wasn’t any change. I was offered 26 rounds of cytoxin and tamoxifen (both chemo drugs) and a 32% chance of living beyond my 5 year plan. I wasn’t able to complete my chemo therapy.

It’s a total shame that the poor and disabled are not treated as citizens but like a burden on the state in which they live. It’s inconceivable as an American that they only reason some of us including loved ones die it’s because they hold American citizenship! How can we as a society sleep at nights when our next door neighbors have to sell their house and relocate because they filed bankruptcy due to medical expenses? How can we as a society sleep at night when we there are people who are not getting healthy everyday but simply growing accustomed to being sick? What is it going to take for us to wake up and realize that the vast majority of Americans are a car wreck, work injury, or fluke accident away from not only being homeless but in the hands of a doctor that you hope is sympathetic and caring enough to treat you after your insurance company drops you simply because you got the flu one too many times. As an American it is your GIVEN RIGHT to have LIFE, LIBERTY, and THE PURSUIT OF HAPPINESS. Those are the ONLY 3 things listed an inalienable rights! Unless I got something wrong in order to have life you must have health.

Want to guess which American considered 3rd world country has socialized medicine? No, it’s not some far off distant land in fact it’s only 90 miles from the southern most part of United States. You guessed it…Cuba! Even with all of the gang wars and drugs on average Cubans live longer than Americans. Not only them though. Let’s not forget about Canadians, French, and ask much as I hate to admit it the British. At the lower end of life expectancy Canadians will live, again on average, 10 years longer than most Americans.

Since December 2001 I have somehow managed to accumulate over 1.23 MILLION dollars in medical debt that was reported to all 3 major credit bureaus. That covers 2 rounds of cancer, advanced HIV disease and subsequently AIDS. Shouldn’t I have been focused more on recovering from these illnesses (assuming I got the proper medical treatment) than trying to set up a payment plan upon discharge from a hospital? Tony Benn once said “If you can find money to kill people you can find money to help people.” We truly live in a world of me…not in a world of WE. With as many Christians the U.S. has perhaps one of them can explain it to me.

Our government is smart though. They have realized that people in debt are hopeless and hopeless people don’t vote. If they can keep the citizens poor, hopeless, demoralized, pessimistic and frightened they can control them. Why on Earth would they want to do that for? Aren’t our legislators just looking after us? No, because they know that an educated, healthy, and confident nation is harder to govern. Even though the working class is responsible for creating wealth the sad thing is only 1% of the worlds population are the only ones getting to enjoy it. It makes me sick that as Americans we work hard, slave away and some CEO on a boat in a Grease port is the one lapping it up.

As the richest country in the world health should not be given on the basis of cash but on the basis of need. Often times we hear that HIV/AIDS is not a death sentence anymore. However, for the Americans who cannot afford the astronomical expense of monthly antiretrovirals it is. In America someone dies from AIDS related complications every 12 seconds. We survive only if we can receive treatment based on pay not on the basis of need. I find it simply amazing that someone living in communist Cuba doesn’t have to feel that but I a citizen of the Democratic United States of America does. Don’t even think about Social Security because despite their cute slogan, “For the times that count…count on Social Security”, I waited a blistering 38 months to receive a judgment in my favor and an additional month beyond that for my FIRST benefit check. They did not hesitate in telling me that they would be re-evaluating my claim in 3 years because they think my condition could improve and I cured of my illness. Is their a cure for AIDS that I am not aware of?

One more interesting fact from the movie is the following…In 1999 the United States asked Norway for the extradition rights to a U.S. citizen because he fled the country. The Norwegian Supreme Court ruled they would not extradite him because the vast majority of US facilities DID NOT meet the LOWEST humanitarian standards. WOW!

Most of the soapbox points came from the movie Sicko and Labour Party member Tony Benn. The closing thought comes from me though. Healthcare should not be a luxury for the privileged but a given right simply because you and I are living, breathing human being.

11 mars 2008

The long, long travelled road

Well readers I come to you at this hour with news that makes me happy beyond compare. As you all know I filed for Social Security in February 2005. I was denied in June of 2005 and again in October 2005. I have been waiting for a hearing since then! I got a letter in the mail from the Social Security Administration dated March 6, 2008 that says the following...

"Our records show you have requested a hearing before an Administrative Law Judge, (ALJ). You did this because you disagreed with our decision on this Social Security disability or Supplemental Security Security Income (SSI) disability claim.

Sometimes we look at claims again before the ALJ holds a hearing. We looked at this claim for Social Security disability benefits or Supplemental Security Income payments again and we are writing to tell you what we found.

An individual must meet certain medical and non-medical rules to qualify for Social Security disability benefits or Supplemental Security Income payments. As a result of our additional review, your disability claim has been ALLOWED because it has been determined that your disability prevents you from engaging in substantial gainful work. the ONSET of your disability is ESTABLISHED as of 02/14/2005. Therefore, IT IS NOT NECESSARY to have your case decided at the hearing level. You will soon get a notice about the amount of your payments.

This determination is based on another review of your claim dated 3/5/08. We are writing to let you know that we have made a decision on your case. After reviewing all of the information carefully, we have decided that you are unable to work. This means that you meet the medical requirements for disability under our rules."

So WHAT THIS MEANS IS THAT AFTER 37 LONG LONG LONG MONTHS OF FIGHTING (OR A LITTLE OVER 3 YEARS) I FINALLY HAVE BEEN APPROVED FOR SOCIAL SECURITY DISABILITY INSURANCE!!! I cannot even begin to express how much weight has been lifted off of my shoulders. All medical expenses from January 2005 to current day will be paid. All in all not including medical expenses the Social Security Administration owes me 37 months of back pay.

Thanks to everyone for your thoughts and prayers during this time! The only thing left to say is...WE DID IT!!!!!!!!!!!!!!

Love to all,

James

10 février 2008

Long awaited update

Alright so hold on to your britches my friends we have a lot of catching up to do! First all Chad and I survived the holidays. Wicked crazy I know. Chad ended up telling his family that if I was not welcome on Thanksgiving then neither was he. We stayed at home had a nice home cooked meal, finished decorating my grandmothers Christmas Tree for her grave, delivered it, and went back home. We spent Christmas eve at my mother's house, he spent Christmas Day with his family and we ended it all by going to my Dad's house X-Mas night. PHEW...it was a really wicked crazy time. Needless to say that I am glad it's over and dread it happening again in a mere 9 1/2 months.

In December I was interviewed by Don Lemon of CNN for World AIDS Day. Below you will find the link. http://www.cnn.com/video/#/video/us/2007/11/30/lklv.lemon.living.with.aids.cnn?iref=videosearch

My birthday celebration happened on Sunday the 30th of December. Honestly this was one of the best I can ever remember in my entire lifetime! I was surrounded by my friends, there was no drama, no arguing, or anything of that nature.

New Year's consisted of a wild and crazy party. I loved it!!!

I am going to quit for now. I will update more later.

Hugs and love,

James

20 novembre 2007

Happy Holidays?!?

Wow...so OMG I totally have a new catergory for a blog other than life. Which I personally think that relationships are a part of life. They do pose a new set of rules and challenges though so I suppose it is worthy enough to have it's own myspace Blog Catergory. So I must admit I don't really know how to handle a situation and I am needing some advice. Please be nice in the advice!

I will not be celebrating this Thanksgiving with my beau. I just found this out a few hours ago. It would really bother me no matter what year it was...however, this will be our first one. I don't get in the middle of any persons family. That certainly isn't my place. However, I don't feel it appropriate that I have to do without my significant other simply becuase they will not stand up to theirs. I did it to mine and made it clear that if my loved one wasn't welcome than I wasn't. It hasn't been a month though since I raised this very issue and recieved reassurance that it wouldn't be a problem. I don't know maybe I am being overly sensitive to this. Maybe I am dreading the memories that will not be had on our first real holiday. Perhaps it will be not standing beside him when it's my turn to give thanks while holding his hand. Or perhaps it will be when I do the annual pilgrimage to the cemetary to place my Grandparent's Tree on their grave I will do it knowing that the now most important person in my life isn't there if I need a shoulder to cry on. Even not being able to be part of their life on the most thankful of days for a period of time is something I am having a VERY VERY difficult time with doing.

Perhaps I am just being overly sentimental. I don't know. All I can say is Happy Holidays. Let's hope history doesn't repeat itself.

Libellés :

07 juillet 2007

Can you see me?

Well here I am. I made it out of the hosptial and am about as fully recovered as I am going to get. While I lost eye sight in the left eye I haven't lost sight of life. Try saying that three times fast! It was confirmed as many of you read from Joshua that I had an infection, specifically HSV (Herpes Simplex Virus 1), hijack my lymph system and travelled to my brain where it cut off the oxygen to the optic nerve in my left eye. As most of you know and remember I also have Cytomeglavirus (CMV) in the left eye as well. The CMV would "flair up" causing me to have bouts of blindness in my left eye. The difference is I knew when the blindness was coming on and that it would only be temporary. That however is no longer the case, as I have lost the vision permanently. So while yes it does suck, I am really attempting to look at the glass as being half full in this regard.

While in the hospital a very dear friend of mine offered me the opportunity to travel across the country with him to see the great United States. I always wanted to do so. While I have travelled quite extensively I have never done so by land. I have always flown. There are so many things I want to see. This trip will give me the opportunity to do so. My fear is that if I put this off then I will never get a chance to see things like Yellowstone Park, Mt. Rushmore, The Grand Canyon...All of a sudden a bright, beautiful world is only an infection away from being black and void. I will not allow that to happen. I pray that it never happens but if I do lose sight in my right eye I will have my memories of seeing the sunrise in Arizona, the Colorado River flowing through the Grand Canyon. That my friends, my memories (not only of my road trip...but of you), will be the things that keep me going in this world. So in case you haven't deduced from the paragraph I took him up on his offer and am leaving in about a week. I will be gone for 2 months. Check back here for picture updates. While on the trip I also will be keeping a written journal and once I get back I am going to publish it (or atleast the edited version:) )

For the time being I have decided to not start my AIDS meds again. My above road trip has nothing to do with it. I simply know that I am not in a place right now to where I would be compliant with the regimine. If I am not going to comply with taking the meds I simply am not going to take them. Doctors agree...wait until you're ready. So that is what I am going to do. I will take antibiotics for a few more weeks and that will be the end of regular medicine.

AIDS is a very dark place. Even I, with my strong support system, get very scared and very lonely when I am in a hospital bed. After my spinal tap on Monday when I woke up I couldn't move...I could barely talk...and all I could do was see (out of my right eye) the few people who were standing beside my bed. Everyone brace yourself for what I am about to say. I was TERRIFIED! I broke down and cried. I felt so helpless. I couldn't even reach for anyone's hand. For the first time since my AIDS diagnosis I was truly afraid that I was going to die. I openly admitted while sobbing hysterically that I didn't want to die. Not that I was or am afraid of death. I simply enjoy my life. Obviously I don't enjoy being ill but that is only a small portion of the time in the grand scheme of things. This visit to the hospital has shown me just how frail life is. To be totally honest...it has shown me that I am not the picture of health that I more times than not project to you all. This illness has shown me just how quickly life can end. Illness of the past has simply shown me how quickly I can catch pneumonia. AIDS is no longer simply a diagnosis for me but it is a living, breathing reality. One that I cannot pretend doesn't exist because it doesn't fit in with my life. AIDS is not who I am...it's what is me.

If you've made it this far congrats! In all seriousness I want to take a few lines to thank all of you! Treatment/recovery is 99% attitude! Without all of the positive people in my life I can't say that I would have the attitude that I do. All of your thoughts and prayers (for those of you pray ;) ) certainly helped me. As crazy as it may sound when I was able to sit up in the bed to eat and entertain my guests I knew that I was able to do so because of all the happy thoughts that were coming from you. The reason I know that is because when you all were sleeping, and I should have been, I was screaming for the morphine :) I do love every single one of you and can never express enough thanks for the calls, e-mails, visits, flowers, and gifts. You were (and continue to be) appreciated in a very difficult time. If there is ANYTHING I can ever do for any of you, you know my number and I expect you to use it.

With much love and gratitude,


James

24 avril 2007

A becon of light has been extinguished.

It's been a while since my last update. Nothing new to report about labs or such. A friend of mine of 6 years passed away on Thursday April 19. At this point I still haven't gotten over the others so right now I am feeling rather numb.

So yesterday the long journey physically came to an end. We laid Danny to rest. I have cried numerous times but have yet to experience the enevitable breakdown that is going to occur. On Sunday we went to the visitation and on the way I stopped and purchased a miniture disco ball and placed it in with him to be buried. Please let me explain the signifigance of the disco ball.

Many eons ago when Backstreet was the happening place to go Danny and I were out dancing. While I was getting some looks and grabs Danny had guys all over him. When we left the dance floor to take a brief break I asked him..."How in the hell do you do it? They're drawn to you! I don't understand." While not jealous I was curious about his mojo. He simply replied "You gotta let go. You're not dancing with the light. Dance with the light of the disco ball." I heeded his advice, it was a growing process I will admit though. Many other memories I will continue to live out as situations arise. I want to say the following to my friend: Dance among the stars my friend. For they are now your disco ball. NEVER stop dancing!

I pened the following...

The questions swirl in my mind.
How? What if? and even why?
A life that shined so bright;
is now extinguished and
still no answers in sight.

Your smile made a room so bright
and now there is darkness
where there once was light.
How you worked your charm
is beyond me; but then again
as you said...most things go
right over me.

As I stare at your lifeless body,
I expect your laughter to erupt
but you lay quiet in this eternal state.
Your body is so cold I want to warm you so.
Warm you with hugs and shower
you with kisses to make it all
just simply better, but then again
that was just you.

The love that you gave knew no
bounderies; much like your selfless
acts that always were bound to surface.
Even in death you gave of yourself
because you knew just what we would do!

Your life now exists now only in words
and memories that you helped burn.
Burn so deep within my mind
your smile, smell, and always wise words.

Your love exists now only within me.

08 février 2007

One Last Refrain...

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One Glory
From: Rent
{denotes change by blogger}

I'm writing one great song before I...One song Glory One song Before I go Glory One song to leave behind Find one song One last refrain GloryFrom the pretty boy front man Who wasted opportunity One song He had the world at his feet Glory In the eyes of a young {guy} A young {guy} Find glory Beyond the cheap colored lightsOne song Before the sun sets Glory - on another empty life Time flies - time dies Glory - One blaze of glory One blaze of glory - glory Find Glory In a song that rings true Truth like a blazing fire An eternal flame FindOne song A song about love GloryFrom the soul of a young man A young man FindThe one song Before the virus takes hold GloryLike a sunset One song To redeem this empty life Time flies And then - no need to endure anymore Time dies.