I brain has been exploding with topics and it is a great feeling to think I have a lot of ideas... sad part is I am not sure where to start .
I started thinking lately about the medical field. Truthfully before my diagnosis I was one to rarely get sick or even go to the Dr. I lived by the old rule my Grandma always taught me "Wait it out for 7 days if you are still having symptoms, then go to the Dr. " It worked about 99% of the time.
Of course with my diagnosis that all changed. I have been very blessed with some great programs that exist here in Washington state. In particular the E.I.P.(Early Intervention Program) was so important when I was not working or working at Starbucks. Starbucks had insurance to PT employees but sadly the cost was so much it ate very heavily into an already small, and minimum waged check.
I started work at AT&T (where I am currently employed) and I was blessed with very nice insurance (No deductible or out of pocket). After years of the amazing coverage available, the company changed the plans. It is still excellent but still made me wonder how much I was saving myself.
The past year I have become much more interested in the health care system. For a few reasons, one is that I am getting older (a scary yet fact of life). I find that I am coming down with more little things. I am also looking at the future of moving to Oregon. . At this stage I am finding that I look at insurance, HIV programs, with all that is included.
My BF is highly organized (thank goodness) with details I would never have thought about. We are preparing the paperwork such as Domestic Partnership, Insurance details, Living Will, Life Insurance, etc. I constantly find myself “when did I become a grown up”. It crept up on me and now I am on the other side of the wall between youth and adulthood.
In the midst I have started looking a bit further into the costs that I was not as aware of in a case such as what would happen if I was not covered for a period of time. This is what I found as of June 2009 numbers:
My HIV Meds:
Retrovir $405.59
Reyataz $892.91
Truvada $867.99
My Anti-depression/anxiety Meds:
Celexa $4.00
TOTAL= $2170.49/mo.
$26,045.88/Tr.
Now I will put into perspective that I just filed my taxes and based on my wages this would leave very little for me to live on if I had to pay full price. The part that floors me is that these are not just random meds; these are meds that basically sustain my life. Last year the FDA stated that they are working on making generic meds that will hopefully someday be available.
This doesn't include the healthy food to keep us in check and help assist with our immune system and overall health, vitamins, and basic needs. The truth is it costs a lot to be healthy and take care of our bodies and it is even more important when infected with any type of disease. Whether it be HIV, Diabetes, etc. The one thing this doesn't include is all the other costs for something else you may have that is part of having a more sensitive immune system.
The two things that sit my head a lot is
1) How many people I have heard sat that HIV is very manageable now and that it is not a death sentence. I know that it is nothing like it was 20, 15 or even ten years ago. But that doesn't mean that it is a cake walk. The idea of the meds, dr. appointments and added stress of a disease that is a content reminder of your mortality can be daunting as well as tiring.
2) The other issue it brings to mind is the state of the health care system in this country. It must be terrifying for anyone who doesn't have or can't afford conventional health care. The deductable for so many health plans is so high. The truth is that a lot of people are in arms about the health care reform bill. I personally don't feel that a lot of the government officials have truly experienced what it is like to have something chronic. If more people had to struggle and be working class they would be more compassionate about the basic needs that so many of us desire just to live day-to-day.
I really hope that as we progress in our governments; health care reform eyes are opened by the rich and upper class we will see a change and an open minded-ness to what truly needs to happen in order to alleviate the stress of the working class of society. The stress alone in knowing the cost of health care reminds me that we are all struggling and that time will hopefully show the growth in the reform movement and society will have one less stress to combat.
"Here's to forever and this life so unkind" -MLH
Friday, January 22, 2010
Wednesday, January 13, 2010
Pt. 2 Falling Down
After my diagnosis the shock had set in and I was lost as to what to do at that stage. I went back to get my final results on December 8th. Miles went through the results and suggested to go to the local intake clinic. I also had second therapy appointment after my intake and they had diagnosed me mildly manic depressive. My soul had taken a dive for the best.
The next day I got a call from Mary Jo with the One 2 One clinic. Mary Jo was one of those people you just don't forget at all. "Hey Michael, this is Mary Jo with One to One. How are you doing? Are you doing ok mentally? Can we see you tomorrow" I reluctantly agreed and figured I may as well get the ball rolling.
I remember sitting in the lobby thinking "Is this what I have to look forward to? Office chairs, the sterile clinic smell, awkward patients in the lobby, horrible magazine (except People, of course)."
"Dr. Wood will see you now Michael"
I didn’t know at the time but Dr, Wood was very renowned for his knowledge and work in the HIV world. The first blood draw was done, and he asked how I was doing and how my health felt. "Shitty, I have these fevers, chills, I feel like my whole body hurts and I hate my blood and can't even jack -off, I feel dirty" Dr. Wood chuckled a bit and said "Michael you know you can't give it to yourself" I started laughing and couldn’t stop. That was my first laughter in over week and it felt good.
Dr. Wood had actually been HIV+ for over 22 years and he was very knowledgeable from a personal and professional experience. He did a physical and touched my body and kept doing that "HMMMM” that makes a patient wonder what is going on. He started asking where exactly it hurt on my body, as he felt all the areas he explained that I had a condition called ARC (AIDS Related Complex) Hearing the words AIDS freaked me out. Dr. Wood assured me it wasn't bad, stating that all the patients who got ARC in the early days are still alive and a lot who didn’t have it passed on. Seeing that it wasn’t a condition most people got we were not sure what that meant for me.
We did preliminary blood work and then he referred me to the HIV office and a an official Dr. devoted to my care. At this stage I had lost 50 pounds, still working 60-70 hour work weeks and pretending my health was just fine. I vented very cryptically in my blogs... to this day those are the hardest things for me to read that I have ever written.
The following month I reverted deep into myself and tried to figure out what to do and how to proceed. I make a major decision to live my life the way I always did and be open about everything... I put myself out there simply because I didn't have any friends who were poz and I severely needed support.
The one lesson I learned sadly though was a lot of people wanted to support me but didn’t know how to and slowly fell away from me as I tried to immerse myself into a world I didn’t know at all. In January my Best Friend Dawn came to visit me. Walking around and trying to be like it was before she had moved to Florida a year earlier she asked me why I didn’t seem the same... That set off a firestorm of emotions and I lost it... "I'm not the same Dawn, I will never be the same and everyone wants me to be the way I was before and it is not possible to be that person again"
That was the first time that someone said ... "OMG I get it , this changed you" ... The next day Dawn walked me to the local HIV support place DUNSHEE HOUSE ... the next week I started in a group that was primarily newly diagnosed guys ... how what a relief that was for me.
The following month my next set of blood work came back ... my CD4 count was 219 and my VL was 207,000. At this stage I had stopped working FT the massive hours were killing me, I was working PT at a local Starbucks and my day consisted of work and then sleeping ... I was still having the fevers and night sweats and the extreme lymphitis. I hadn’t started meds for fear of being on meds the rest of my life.
At this stage it was time to make some major decisions...
To Be Continued....
The next day I got a call from Mary Jo with the One 2 One clinic. Mary Jo was one of those people you just don't forget at all. "Hey Michael, this is Mary Jo with One to One. How are you doing? Are you doing ok mentally? Can we see you tomorrow" I reluctantly agreed and figured I may as well get the ball rolling.
I remember sitting in the lobby thinking "Is this what I have to look forward to? Office chairs, the sterile clinic smell, awkward patients in the lobby, horrible magazine (except People, of course)."
"Dr. Wood will see you now Michael"
I didn’t know at the time but Dr, Wood was very renowned for his knowledge and work in the HIV world. The first blood draw was done, and he asked how I was doing and how my health felt. "Shitty, I have these fevers, chills, I feel like my whole body hurts and I hate my blood and can't even jack -off, I feel dirty" Dr. Wood chuckled a bit and said "Michael you know you can't give it to yourself" I started laughing and couldn’t stop. That was my first laughter in over week and it felt good.
Dr. Wood had actually been HIV+ for over 22 years and he was very knowledgeable from a personal and professional experience. He did a physical and touched my body and kept doing that "HMMMM” that makes a patient wonder what is going on. He started asking where exactly it hurt on my body, as he felt all the areas he explained that I had a condition called ARC (AIDS Related Complex) Hearing the words AIDS freaked me out. Dr. Wood assured me it wasn't bad, stating that all the patients who got ARC in the early days are still alive and a lot who didn’t have it passed on. Seeing that it wasn’t a condition most people got we were not sure what that meant for me.
We did preliminary blood work and then he referred me to the HIV office and a an official Dr. devoted to my care. At this stage I had lost 50 pounds, still working 60-70 hour work weeks and pretending my health was just fine. I vented very cryptically in my blogs... to this day those are the hardest things for me to read that I have ever written.
The following month I reverted deep into myself and tried to figure out what to do and how to proceed. I make a major decision to live my life the way I always did and be open about everything... I put myself out there simply because I didn't have any friends who were poz and I severely needed support.
The one lesson I learned sadly though was a lot of people wanted to support me but didn’t know how to and slowly fell away from me as I tried to immerse myself into a world I didn’t know at all. In January my Best Friend Dawn came to visit me. Walking around and trying to be like it was before she had moved to Florida a year earlier she asked me why I didn’t seem the same... That set off a firestorm of emotions and I lost it... "I'm not the same Dawn, I will never be the same and everyone wants me to be the way I was before and it is not possible to be that person again"
That was the first time that someone said ... "OMG I get it , this changed you" ... The next day Dawn walked me to the local HIV support place DUNSHEE HOUSE ... the next week I started in a group that was primarily newly diagnosed guys ... how what a relief that was for me.
The following month my next set of blood work came back ... my CD4 count was 219 and my VL was 207,000. At this stage I had stopped working FT the massive hours were killing me, I was working PT at a local Starbucks and my day consisted of work and then sleeping ... I was still having the fevers and night sweats and the extreme lymphitis. I hadn’t started meds for fear of being on meds the rest of my life.
At this stage it was time to make some major decisions...
To Be Continued....
Saturday, January 2, 2010
'00's -- My Grand Decade
In writing about the New Year there is so many thought on my mind. Writing about the year 2009 was an easy task. Writing about the decade is harder. How do you look at a decade and contemplate all the changes that have taken place? all that happened? I feel more like.. What didn’t happen?
The first, and most obvious change that occurred, was my writing. I discovered the world of blogging. Thank GOD. It was my sanity and I am thankful for that. I love writing getting my thoughts out and being able to go back and see how far I have come. It has been a journey of slowly coming out my shell more and more. I share my heart and soul and withhold less and less.
I discovered the world of Independent music. Now, I feel like I would be lost musically without the likes of Eric Himan, Casey Stratton, Christopher Dallman, Aiden James, Sacha Sacket, Gregory Douglass, Ryan Mintz just to name a few of the many I have learned to love.. I became inspired. I started to learn about how hard some people work for their art. Never taking that for granted has meant the world.
I did take most of the decade off to not work on my own music. The decade that was the 90's I wrote close to 100 songs and just became disillusioned. I worked so hard and ended up having it all blow up in my face. That will be changing in this next decade. Though the hiatus was needed as I had to live some life and see the world a bit more.
In the last decade I dated, (a lot). But I am glad I did. As each person that I dated taught me more and more about myself and who I was, where I was going, what I wouldn't tolerate and what made me happy. I ended the decade on a great note with my search concluded. I walked away with stories, experiences, and the chance to grow into who I am now. I am thankful I get to end the decade with Jacob for showing me true love that is so undeniable.
I winded my way through many groups of friends, many characters, many seasons. I ended the decade once again with a very close knit group of people who are so supportive, caring and open hearted. I know that I am not alone and that I have support all over the country, world even. I am so Thankful for Brandon, Dawn, Rose, Heidi, Lacey. Austin, of course Dutchess, and others I know I will forget some more but you all know who you are. I feel truly supported and embraced.
I moved away from my home for the first time in my life to the "big city" of Seattle. Funny, when I moved to Seattle it was seen to me as a huge metropolis. I remember, vividly, my mom calling me and so worried. Seattle was my first adventure on my own here away from Spokane. My “Wide Open Spaces” phase. Speaking to my mom on the phone one night while waiting for a bus, she started to cry and said she was so worried about me. Those days are way past and now my mom cries wishing I would just come home more often. She has stated many times how proud she is of me and I feel it.
I moved back to Spokane shortly, 2006. Once there my mom said that she knew I had a home in Seattle, that I no longer belonged in Spokane. I knew as well. The night of December 11th, on a Seattle visit, I stood on the Alaskan Way bridge watching the city with my friend Lee. The city moved and glowed so brightly. The following week I moved back to Seattle.
Though the distance from my family has been hard, it has also brought us closer together. More than I ever planned. My mom and I are closer than we have been in my whole life. I have amazing siblings and cousins and grandparents that showed me that as we get older much disputes, pain, and indifferences gets settled in the dust that is the past. Sadly my Grandpa didn’t get to see the decade end (close though) but I know that he was proud of me and who I have become.
I have learned about myself and at the core WHO I am. I have confronted the monsters deep in me and fought off the demons that battled my inner being. I have challenged my beliefs, challenged my perceptions. I have embraces all aspects of the Lesbian Gay Bisexual and Transgender world. I have learned to stand up for what I believe
The start of 2010 looks to be more adventures and moving to the next place and stage in my further development. I hope to look back in ten years and say that I have grown even more.
So, for now, thank you ‘00’s. You were the decade of change and acceptance for me.
Here is to forever and this life so unkind…..
The first, and most obvious change that occurred, was my writing. I discovered the world of blogging. Thank GOD. It was my sanity and I am thankful for that. I love writing getting my thoughts out and being able to go back and see how far I have come. It has been a journey of slowly coming out my shell more and more. I share my heart and soul and withhold less and less.
I discovered the world of Independent music. Now, I feel like I would be lost musically without the likes of Eric Himan, Casey Stratton, Christopher Dallman, Aiden James, Sacha Sacket, Gregory Douglass, Ryan Mintz just to name a few of the many I have learned to love.. I became inspired. I started to learn about how hard some people work for their art. Never taking that for granted has meant the world.
I did take most of the decade off to not work on my own music. The decade that was the 90's I wrote close to 100 songs and just became disillusioned. I worked so hard and ended up having it all blow up in my face. That will be changing in this next decade. Though the hiatus was needed as I had to live some life and see the world a bit more.
In the last decade I dated, (a lot). But I am glad I did. As each person that I dated taught me more and more about myself and who I was, where I was going, what I wouldn't tolerate and what made me happy. I ended the decade on a great note with my search concluded. I walked away with stories, experiences, and the chance to grow into who I am now. I am thankful I get to end the decade with Jacob for showing me true love that is so undeniable.
I winded my way through many groups of friends, many characters, many seasons. I ended the decade once again with a very close knit group of people who are so supportive, caring and open hearted. I know that I am not alone and that I have support all over the country, world even. I am so Thankful for Brandon, Dawn, Rose, Heidi, Lacey. Austin, of course Dutchess, and others I know I will forget some more but you all know who you are. I feel truly supported and embraced.
I moved away from my home for the first time in my life to the "big city" of Seattle. Funny, when I moved to Seattle it was seen to me as a huge metropolis. I remember, vividly, my mom calling me and so worried. Seattle was my first adventure on my own here away from Spokane. My “Wide Open Spaces” phase. Speaking to my mom on the phone one night while waiting for a bus, she started to cry and said she was so worried about me. Those days are way past and now my mom cries wishing I would just come home more often. She has stated many times how proud she is of me and I feel it.
I moved back to Spokane shortly, 2006. Once there my mom said that she knew I had a home in Seattle, that I no longer belonged in Spokane. I knew as well. The night of December 11th, on a Seattle visit, I stood on the Alaskan Way bridge watching the city with my friend Lee. The city moved and glowed so brightly. The following week I moved back to Seattle.
Though the distance from my family has been hard, it has also brought us closer together. More than I ever planned. My mom and I are closer than we have been in my whole life. I have amazing siblings and cousins and grandparents that showed me that as we get older much disputes, pain, and indifferences gets settled in the dust that is the past. Sadly my Grandpa didn’t get to see the decade end (close though) but I know that he was proud of me and who I have become.
I have learned about myself and at the core WHO I am. I have confronted the monsters deep in me and fought off the demons that battled my inner being. I have challenged my beliefs, challenged my perceptions. I have embraces all aspects of the Lesbian Gay Bisexual and Transgender world. I have learned to stand up for what I believe
The start of 2010 looks to be more adventures and moving to the next place and stage in my further development. I hope to look back in ten years and say that I have grown even more.
So, for now, thank you ‘00’s. You were the decade of change and acceptance for me.
Here is to forever and this life so unkind…..
Pt. 1 My Diagnosis
I decided I would start to write about my journey from the beginning. I was listening to the recent POZIAM radio webcast and agree there is a lot to be learned about the world of the newly diagnosed.
My journey started on October 15th, 2005. I woke up one morning and was sick as a dog. I remember getting the shower and I passed out. I was not sure what was going on and proceeded to go to the Dr. Office. They ran a series of tests and sent me to the ER for some speedy lab work.
There was nothing they were able to find and said I must have had some intense flu. I was having intense night sweats and even more intense fever of around 103-105 nightly. The illness wiped me out and left me out of work for two weeks. Before that point I had barely been sick a day a year at work. The feelings subsided and I thought I was better.
A week or so later the same symptoms came back and even more so. I went to the ER thinking they may help me figure out what is the issue. They thought it was Colitis and sent me on my way with some meds. The fevers started again and I was working about 60-70 hours in a retail store a week. I figured it was something I would get through, The Colitis test results came back negative and so I figured it was a nasty flu that just wouldn't go away.
Fast forward to November, 30th. I made me regular appointment with Gay City for my yearly-ish HIV Test. My appointment was at 7pm. I walked in and filled out the routine paperwork and waited. The HIV specialist Miles asked me to come into the tiny room. Large enough for only a small table and two chairs. He took a swab from my mouth and drew a small amount of blood. He explained the test would take 20 minutes and then we would send the blood off to the labs to make sure it was all clear of any other STD's.
"What brings you in?" "My routine test" "Have you had risky behavior" " No the only two people I had been with both told me they were negative and aside from that I haven't been with anyone" "Did you use protection?" "No I trusted them" "What would happen if the test came out positive" " Well I have a great group of friends, but I know its going to negative" "Will anything change if it is negative for you" "Not really cause I am open to my partners about things"
20 minutes passed....
"OK Michael you ready" "Sure, of course" "Michael your POSITIVE" ... I still remember that feeling as he said it ... "You mean positive I'm negative right?"
"No Michael you tested positive for HIV"
I just sat there stunned. For the first time in a long time I had no words no reaction. My head just felt like it was spinning and it wouldn’t stop. I remember Miles asked if i was ok. "Of course I will, why wouldn't I" Those were the words I said but I wanted to just scream “YOU STUPID F**KER OF COURSE I’M NOT OK. I HAVE SOMETHING THAT’S GOING TO KILL ME” But instead I stayed calm. He just sat there and looked concerned. He said "Listen I rarely do this but I am worried about you, can I give you a hug" ... I let him hug me and I left in a daze, making my return appointment for the next week.
All the questions in my head were too much and I as I walked to my car I just fell. It was if my legs were gone and I wasn’t able to stand anymore. I called my close friend Ro at the time and asked to come visit him. He said he would meet me and that he was here for me. The funny part was even with him there I was alone.
I found out that apparently it was not legal for any doctors to ask for me to take an HIV test and I assumed they would have if they thought hat was even a chance. I attempted to contact the two people I had been with one answered and was so mad at me. He yelled and said he would get tested. The other guy didn’t answer. I was so lost and confused at what to do, who to call, who to tell.
After trying to hunt down the guy that didn't answer I found him online. I told him about finding out my status. He said "Oh I should get tested I guess" ... seemed an odd reaction... I spoke to some of his friends and found out that he had actually known that he was HIV+ for at least two years.
I found the person again online and explained that I knew about his lack of truthfulness. I explained that I knew that I could prosecute but that I wouldn’t with the agreement he change his status online and he be truthful. The truth is that I had been sick now for 6 weeks and had no energy to go after him. It wouldn’t change that I was already now Poz and had to deal with what I had.
TO BE CONTINUED...
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My journey started on October 15th, 2005. I woke up one morning and was sick as a dog. I remember getting the shower and I passed out. I was not sure what was going on and proceeded to go to the Dr. Office. They ran a series of tests and sent me to the ER for some speedy lab work.
There was nothing they were able to find and said I must have had some intense flu. I was having intense night sweats and even more intense fever of around 103-105 nightly. The illness wiped me out and left me out of work for two weeks. Before that point I had barely been sick a day a year at work. The feelings subsided and I thought I was better.
A week or so later the same symptoms came back and even more so. I went to the ER thinking they may help me figure out what is the issue. They thought it was Colitis and sent me on my way with some meds. The fevers started again and I was working about 60-70 hours in a retail store a week. I figured it was something I would get through, The Colitis test results came back negative and so I figured it was a nasty flu that just wouldn't go away.
Fast forward to November, 30th. I made me regular appointment with Gay City for my yearly-ish HIV Test. My appointment was at 7pm. I walked in and filled out the routine paperwork and waited. The HIV specialist Miles asked me to come into the tiny room. Large enough for only a small table and two chairs. He took a swab from my mouth and drew a small amount of blood. He explained the test would take 20 minutes and then we would send the blood off to the labs to make sure it was all clear of any other STD's.
"What brings you in?" "My routine test" "Have you had risky behavior" " No the only two people I had been with both told me they were negative and aside from that I haven't been with anyone" "Did you use protection?" "No I trusted them" "What would happen if the test came out positive" " Well I have a great group of friends, but I know its going to negative" "Will anything change if it is negative for you" "Not really cause I am open to my partners about things"
20 minutes passed....
"OK Michael you ready" "Sure, of course" "Michael your POSITIVE" ... I still remember that feeling as he said it ... "You mean positive I'm negative right?"
"No Michael you tested positive for HIV"
I just sat there stunned. For the first time in a long time I had no words no reaction. My head just felt like it was spinning and it wouldn’t stop. I remember Miles asked if i was ok. "Of course I will, why wouldn't I" Those were the words I said but I wanted to just scream “YOU STUPID F**KER OF COURSE I’M NOT OK. I HAVE SOMETHING THAT’S GOING TO KILL ME” But instead I stayed calm. He just sat there and looked concerned. He said "Listen I rarely do this but I am worried about you, can I give you a hug" ... I let him hug me and I left in a daze, making my return appointment for the next week.
All the questions in my head were too much and I as I walked to my car I just fell. It was if my legs were gone and I wasn’t able to stand anymore. I called my close friend Ro at the time and asked to come visit him. He said he would meet me and that he was here for me. The funny part was even with him there I was alone.
I found out that apparently it was not legal for any doctors to ask for me to take an HIV test and I assumed they would have if they thought hat was even a chance. I attempted to contact the two people I had been with one answered and was so mad at me. He yelled and said he would get tested. The other guy didn’t answer. I was so lost and confused at what to do, who to call, who to tell.
After trying to hunt down the guy that didn't answer I found him online. I told him about finding out my status. He said "Oh I should get tested I guess" ... seemed an odd reaction... I spoke to some of his friends and found out that he had actually known that he was HIV+ for at least two years.
I found the person again online and explained that I knew about his lack of truthfulness. I explained that I knew that I could prosecute but that I wouldn’t with the agreement he change his status online and he be truthful. The truth is that I had been sick now for 6 weeks and had no energy to go after him. It wouldn’t change that I was already now Poz and had to deal with what I had.
TO BE CONTINUED...
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