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Showing posts with label HIV awareness. Show all posts
Showing posts with label HIV awareness. Show all posts

Monday, June 20, 2011

Project 365: Day 5

Last night was Jimmy's big fundraiser for the AIDS Walk SF in July.  He does so much for the community.  And if he raises $5,000, he will be doing the 6 mile walk in HEELS.  People have been very generous and it sounds like he'll be walking in heels.  :-)

Friday, June 17, 2011

Dan Jones rocks my socks off...and he will rock yours off too

I know I've mentioned it before but Dan Jones and Jimmy Gale are amazing people.  Dan just finished riding what would feel like a million miles to my fat ass in the AIDS LifeCycle ride.  He raised something like $18,000 for the cause.  Jimmy set a goal of raising $5,000 for the AIDS Walk San Francisco and promised to wear his red pumps if he does (this is six mile walk, people!).  He's not even to his big fundraiser night (see you at Club 1220 in Walnut Creek this Sunday!!!) and he is well over half the way to his goal. 

Dan has drawn some amazing charcoal portraits that he is donating to Jimmy to raise money for the walk.  I just got chills writing that line.  You should see these portraits.  They have to be seen in person to truly appreciate them.  These men are so selfless and so amazing.  There are not even enough words in the English language to describe how awesome they are.

Anyway, the auction for the portraits is live!  If you are interested in bidding, please check out the link below!  Be generous, it goes to a great cause!

http://blog.cadano.net/











http://lolorashel.blogspot.com/2011/06/aids-walk-san-francisco.html

http://lolorashel.blogspot.com/2011/06/i-heart-jimmy-gale.html

http://lolorashel.blogspot.com/2011/05/team-le-dream.html

http://lolorashel.blogspot.com/2011/01/support-aids-lifecycle-fundraiser.html

Tuesday, June 14, 2011

AIDS Walk San Francisco

Dan, Stuart and company just finished the AIDS/LifeCycle ride from San Francisco to Los Angeles.  They rode almost 550 miles.  Congratulations, boys!!

Now its time to turn to the AIDS Walk San Francisco, which will take place July 17, 2011.  Please watch Jimmy's video and donate if you can...even $5 will help.  Then share his video with your friends.  Everyone has been touched by HIV or AIDS in some way.  Let's help end this disease!



Previous blogs:

http://lolorashel.blogspot.com/2011/06/i-heart-jimmy-gale.html

http://lolorashel.blogspot.com/2011/05/team-le-dream.html

http://lolorashel.blogspot.com/2011/01/support-aids-lifecycle-fundraiser.html

http://lolorashel.blogspot.com/2011/01/you-never-think-it-could-happen-to-you.html

Jimmy's fundraiser at Club 1220 in Walnut Creek is coming up THIS Sunday:

http://www.facebook.com/event.php?eid=217114474984597

Dan is also selling five portraits to support Jimmy's AIDS Walk.  If you'd like to see the photos in person (the photographs do not do them justice...they are GORGEOUS in person), please join us at a preview TOMORROW night:

http://www.facebook.com/event.php?eid=133618463380154

If this is all just too much to handle and you'd like to simply donate to the cause, please visit this website:

http://awsf2011.kintera.org/faf/donorReg/donorPledge.asp?ievent=467364&lis=1&kntae467364=C0CE6B32FC6740ED83C42B5A926616B3&supId=255238537

Thank you in advance!

Tuesday, June 7, 2011

I heart Jimmy Gale

I think Jimmy's note says it all:

Why I Walk... 2011

by Jimmy Gale on Monday, June 6, 2011 at 4:33pm
 
Every July, I gather on the field at Golden Gate Park and it takes my breath away. Thousands of men and women band together for many reasons… to commemorate, to remember, to share their stories, to laugh and to cry… but most importantly, to help stop a growing epidemic.  HIV/AIDS.

On August 25th, 2008… three little words forever changed my life. “Your test came back positive.” It was like having a big rig run me over. There were no words, or thoughts that could have prepared me for that simple statement. But as we all know, HIV is not simple. Since that day I have thrown myself into this fight. I have always been involved with HIV education and fundraising, both as Jimmy and as my alter-ego “Stephanie Nicole le Dream” (or “Safe Sex Stephanie”.) But, everything changed for me that day.

It was like “coming out” all over again. But instead of declaring myself as a proud gay man, I had to tell my friends and loved ones that I was technically “terminally ill.” While I now know that I am going to live a long and happy life, death was definitely in the forefront of my thoughts for that first year.

It was shortly after being diagnosed that I found the Rainbow Community Center and the amazing men of the Monday Night Group. Many of these men have lived with HIV for up to 30 years, and their collective knowledge and experience helped remind me how far we have come. These guys showed me that I was going to be okay… they gave me the strength to stand up and helped me find my strength and my voice. I quickly got involved with the RCC and began my mission to educate as many people as possible, and eventually I began working here.

I now run our FREE HIV Testing Clinic twice a month, provide condoms to our community, and go out into the community and speak to people about my experiences living with HIV and talking about the importance of safer sex and getting tested. Through my outreach, I have met some of the most amazing people… my new family… “Team le Dream.”

HIV doesn’t care who you are. It doesn’t care what color your skin is. It doesn’t care who you sleep with, marry or love. HIV just doesn’t give a damn. But the RCC does. Club 1220 does. I do.

I walk in memory of Chad Droll Scalise. Chad was a kind and gentle man who loved with an open heart. He was surrounded by so many that loved him, and miss him to this day. He was a man of few words. But shortly after I was diagnosed, Chad pulled me aside at 1220 and told me that I was going to be alright. He had never said much to me over the years that I knew him… but when he hugged me that night, I really truly knew that I was going to be okay.

Chad left us on March 26th, 2010. He is left behind by a loving family, amazing friends, and a husband of 17 wonderful years. Chad has left a big hole in our hearts… and a day doesn’t go by that I don’t think of him. And I will walk in his memory as long as I live.

But I walk for more.

I walk for my family. The ones that drive me crazy and make me yell… but somehow still love me. For my Mom, who is my biggest fan. Telling her that I had HIV nearly killed me… and even now as I write this letter, I’m crying remembering that day. For my brothers, Stephen and Nick. For my amazing new sister-in-law, Amanda, and her 2 beautiful children. I pray that someday those 2 kids do not have to grow up in a world with HIV.

I walk for my friends. The friends that were there for me the night I that I was shattered behind repair. The friends that hold my hand when I share my story with a newly diagnosed person. The friends that cheer my on at every fundraiser. The friends that stood by me all these years, when others were so afraid to be in the same room with me.

I walk for those who are HIV+, but can’t disclose for fear of losing their jobs and their family.
I walk for my boyfriend. My best friend. My love. He is HIV-… and I plan to keep him that way. We will be celebrating 2 years together on July 26th. Being in a sero-discordant relationship is never easy, something I didn’t think was even possible… but we are trying our hardest to make it work. I love you, more than you will ever know.

I walk for you.

Even if we have never met or will never meet, I want you to know that there are people out there that care about your health… people that want you to be safe and stay HIV-. Even if you are HIV+, there are people out there that want you to take care of yourself… to take your meds… to get on meds… to prepare you for what’s ahead. I care about you and want you to make it through this.

This will be my 6th year doing the San Francisco AIDS Walk. And even tho times are hard, It would mean so much if you could donate to this cause. 100% of the money that I raise comes to back to fund our free HIV Testing clinic and provide condoms and education to the community. HIV prevention and education funding is non-existent these days… so every donation will help save a life.

I hope to see you out at Golden Gate Park on Sunday, July 17th for the 25th Annual SF AIDS Walk.

Love always
Jimmy Gale
3 years HIV+… and I’m still here.

Please visit www.aidswalk.net/sanfran and search for me... Every donation no matter how small, will help. If you would like to mail your donation, please send it to:

Rainbow Community Center
Attn: Jimmy Gale
3024 Willow Pass Rd, Suite 200
Concord, CA 94519

Checks can be made out to “AWSF” or “AIDS Walk San Francisco”.
For more information about the Rainbow Community Center, you can visit our website at www.rainbowcc.org.


*********
 Please donate:  
http://awsf2011.kintera.org/faf/donorReg/donorPledge.asp?ievent=467364&lis=1&kntae467364=8E7AB03FB5EB4BB6A7C5A1988990FB45&supId=255238537

http://lolorashel.blogspot.com/2011/05/team-le-dream.html

Friday, May 27, 2011

Team le Dream

The 6th Annual Charity Drag Show - A Fundraiser for the SF AIDS Walk is coming up in a few weeks. It benefits Stephanie Nicole le Dream, aka my amazing friend, Jimmy Gale. Jimmy will be doing the AIDS Walk in San Francisco next month. I will be joining him to enjoy the scenery and take photos.

I included Jimmy's story when I did a blog about Dan's AIDS/LifeCycle ride:
http://lolorashel.blogspot.com/2011/01/support-aids-lifecycle-fundraiser.html

I also did another blog about HIV that is worth checking out:
http://lolorashel.blogspot.com/2011/01/you-never-think-it-could-happen-to-you.html

The drag show and fundraiser at Club 1220 in Walnut Creek will be a blast. Jimmy hosted a fundraiser for the AIDS/LifeCycle riders and it was a lot of fun. We had raffle prizes and got to see lots of great drag performances. The fundraiser will be held Sunday, June 19th. Check out the link for this year's event on Facebook:

Dan is an artist and has created some amazing portraits that he would like to donate to Jimmy's walk. The portraits will be on display at a coffee house in Pittsburg for the next few months. He will be selling them and donating all of the money to the AIDS Walk San Francisco. If you'd like to see the portraits in person (or would like to see photos and bid online), check out the event page I set up:

http://www.facebook.com/event.php?eid=133618463380154

Speaking of Dan, here's his artist website:
http://www.cadano.net/

And here's an article about his AIDS/LifeCycle ride that was on the FRONT PAGE OF YAHOO! Go Dan!
http://news.yahoo.com/s/yblog_localsfbg/20110518/ts_yblog_localsfbg/man-overwhelmed-by-response-to-youtube-plea-for-aids-lifecycle-donations

From what I understand, Dan has made over $16,000 towards his ride. Congratulations!!!

Back to Jimmy!

Jimmy is one of those people that I met and felt like I had known forever. I will support him every way I can! If Jimmy raises $5,000, he will do the AIDS Walk in HEELS. This is a 6 mile walk, people. Let's bring the pain!

If you would like to donate directly to Jimmy on the AIDS Walk website, please check out this link:

http://awsf2011.kintera.org/faf/donorReg/donorPledge.asp?ievent=467364&lis=1&kntae467364=8E7AB03FB5EB4BB6A7C5A1988990FB45&supId=255238537

Otherwise, I hope to see you at one of the events posted above!

Photos of the portraits Dan will be selling:





Pictures of Jimmy and friends:







Thursday, January 27, 2011

You never think it could happen to you...

I have reconnected with so many old friends on Facebook.  It's been a lot of fun seeing how people are doing and what they've been up to.  Last night, after posting about Dan's fundraiser for the AIDS LifeCycle, an old friend sent me a message saying that they contracted HIV a few years ago.  They said a lot of people don't know so they asked that I keep their secret.  But I asked that they write their story down for me and I would share it anonymously.  Because, you never think it could happen to you and this is an example of how you never know what life has in store for you.

Please don't ask who the person is.  I will keep their secret locked up tight.  But I hope you can hear their story and then open your wallet to support Dan (who will help people like this).

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On February 2 it will be 3 years since I found out that I was HIV positive and my life as I knew it would change forever. I'm a healthcare worker, and have been for nearly 12 years. I had taken a job in a small town in the mountains so that I could enjoy life a little and help my dad out after his divorce from my mother. Was a normal day in the ER and I was helping with a patient that had fallen ill with an AIDS related case of pneumonia. During the packaging of the patient to send him to ICU, I grabbed ahold of some equipment that had alot of blood on it, and realized that I didn't have my gloves on.

I didn't really think anything of it. Washed my hands and went about my day. Three months later I thought that I had the worst case of flu ever known to man...lol. That month was my birthday and we were given a free lab panel blood screen test. On Feb. 2, they informed me that my tests came back Pos. for HIV. I lost my mind that day. There were so many emotions that I had never felt before. I instantly remembered the blood exposure and I hadn't filed any paperwork for workman's comp.

I informed my boss of my news, and was allowed to keep my job. For now. The hospital would not allow the work comp claim. I was on my own, with no insurance. With help from my cuzn I was able to find an HIV program that helped people out in need. There are many programs, grants, etc. to help, but do not last long. Again...so many emotions. Depression, Suicidal thoughts, and keeping myself away from people as I was afraid I would infect someone. My living in a small town in the mountains turned into severe isolation and hinderance. One day my friend called and said they had a dog dumped in their driveway in a box. I went over that night and found that it was an awsome Border Collie Puppy with a broken tail. I instantly feel in love with her and took her home. She gave me something to live for, and be happy about. I needed to be there for her. So a year goes by and my boss tells me its time to tell everyone that I was sick at work. So during a morning and evening staff meeting, I stood in front of the room and told my peers that I was sick. I wanted to vomit and pass out. Was the most embarassing thing ever. I had nowhere to hide. A week goes by and I was called into the office and was told I was being laid off. I knew why. I suddenly had no income, insurance and ability to pay for meds. The stress took its toll on my body and I got sicker...faster. I was placed on med. I was given the option of the typical cocktails that made you look sick, or one that made you feel crazy. I figured, I've always walked the line of crazy or not so I'd go with that one. $1,700 per month was the cost to keep me alive with the crazy pill.

The pill indeed made you feel sick, and crazy. At first it gave me the spins. Just as bad as a long night with Tequila. It gradually got better, and 2 years later I don't feel the side affects. One pill per night and thats it for now, as long as the virus keeps responding to it. I Have now had an ongoing lawsuit with the hospital that is stalled and will take a long time to finish. I was given inside info, I had indeed been let go because of my HIV status. During the 8 months of unemployment and continued searches for work, I was made aware by a potential employer that the hospital had told them I was HIV pos and not to hire me. I luckily found a full time job with benefits at the very time when my unemployment, and medical grants for my meds would end. I have been at my job for 11 months now and fear every day that I will be found out, and lose my job. Now nearing the 3 year anniversary which is 2 days after my birthday I am comfortable with who I am, and direction that my life is going. There have been a few side affects of the disease and medicine, but I've made it through with my dog at my side, and the support of a few friend.

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I really appreciate my friend sharing this story.  Even staying anonymous, it was very brave!

Please watch my video or Dan's and put ONE DOLLAR in the mail to support AIDS research.  The life you end up saving may be your own!!!

http://www.youtube.com/watch?v=5Oqay2UzULE

http://www.youtube.com/watch?v=bMVGXVN4gGA

Thank you!

Wednesday, January 12, 2011

Support the AIDS LifeCycle fundraiser

HIV has never had a face for me.  I was recently reading a friend's old blog on Facebook and found out he is HIV positive (and has been for a couple of years).  I was shocked.  Stunned.  I felt like I had been punched in the stomach.  I'd never actually known anyone with HIV.  And then I felt stupid and selfish.  If I was feeling that way, I couldn't even imagine what he was going through.  He didn't look sick.  But now I had a face to attach to the disease.  And it could be anyone walking down the street. 

Then the stories started coming out of the woodworks.  It was like an awakening for me.  I found out one of my high school friends had a brother who died of AIDS in 1995.  And my very own childhood neighbor died in 1986.  I had no idea. 

You all know I'm down to support a good cause.  Some people also know I was brought up in the Mormon religion (and half of my family still attends church), which is an adversary of gay rights.  This should probably create a conflict in my brain, but it doesn't.  I don't want to debate whether it is morally right or wrong for gay people to be gay.  I don't care if they were born that way or if they chose to be that way.  I see people who are suffering and need help.  They are people.  Just like you and me. Besides, HIV and AIDS isn't a gay disease.  It affects everyone.  Gay, straight, male, female, black, white...  HIV and AIDS does not discriminate. 

I decided to write this blog to support my friend Lety's brother, Dan, as he rides in the AIDS LifeCycle Ride to End AIDS.  Dan needs to raise $3,000 and is asking everyone to send him only $1.  I already put my dollar in an envelope today and plan to donate more on the website.  I ask that you watch the video (and prepare to cry) and please send a dollar.  It's only a dollar. 



If you'd like to donate through the website, please do:

http://www.tofighthiv.org/site/TR/AIDSLIFECYCLE10/AIDSLifeCycleCenter?px=1119463&pg=personal&fr_id=1320
I recently attended a Christmas party at the Rainbow Community Center in Concord.  What an amazingly nice and warm group of people.  I've decided to start volunteering some time there when I can.  If you have time or money to contribute, please consider the RCC!   

As you know, my favorite drag queen is Stephanie Nicole Le Dream.  Check out her Facebook page.  She is a HUGE advocate of safe sex, HIV prevention and awareness.  Just call her Safe Sex Stephanie -- the Triple S (Love + Lipstick)!

Here is Jimmy's speech from World AIDS Day 2010:

Nearly two and a half years ago, five words changed my life.

“Your test came back positive”

At that moment, I could barely breathe… barely function. At that moment, my life was over.
But I was wrong. Being diagnosed with HIV didn’t mean that my life was over, but it did give me a new purpose. For all of my adult life, I have been involved with the fight against HIV. I have done my best to educate my friends and loved ones. I have fundraised to help fund HIV prevention and outreach. I have done whatever I could to remind people about the Red Ribbon… which is why, I am still here today.

Two weeks after my diagnosis, a friend took me to the Rainbow Community Center to get help. As I walked into that support group, I was scared out of my mind. Everything I had ever learned about HIV was forgotten the instant I got my results back… but luckily, there were dozens of men willing to share their strength and their stories with me. There were men who had lived with this disease for decades… it hadn’t been easy for them, but they were still here, willing to share their knowledge with someone they had just met… a total stranger. And it because of these men that I realized that I wasn’t going anywhere anytime soon… and that I had a responsibility to educate others

Every 9.5 minutes, someone in the United States is diagnosed with HIV. Even after all of the deaths, the memorials and public outcry… people continue to get HIV. During the 80’s and 90’s, people were very aware of the dangers of unprotected sex and sharing needles… but at some point, people forgot. Perhaps it was the vigils, perhaps it was memorials that made them close their minds and try to forget everything that the thousands of lives we lost to HIV meant. Maybe it’s this new generation of young people that don’t realize or remember what we went through… they didn’t grow up in a world where the red ribbon meant something. They simply forgot.

The statistics are staggering. Young people between the ages of 13 and 24 make up the largest percentage of people being diagnosed. Being young, we sometimes feel that we are invincible… that nothing can hurt us. We all know that smoking is bad for us… we know that drinking and driving is a really bad idea… and we know that we should always wear a condom… but, being young isn’t an excuse for stupidity.

The fact is, that HIV doesn’t care who you are. It doesn’t care the color of your skin. It doesn’t care who you love, who you sleep with, who you marry. How many friends you have on Facebook. HIV isn’t particular… it’s a real danger to everyone.

Here in Contra Costa, the numbers of people being diagnosed with HIV are on the rise… and unfortunately, funding is very limited. So programs get cut drastically, outreach is stopped due to budget cuts, people can’t get tested because their isn’t a place available for them… and eventually, we end up with more people living with this disease. The little money we do have, is focused on helping only select groups of people… but isn’t everyone at risk?

I was lucky to find a place like the Rainbow Community Center. It gave me the support when I needed it most… and now I have the strength to continue to educate and protest. There are so many resources available to those of you living with HIV… and there are still resources available to those of you who need to get tested. The important thing to remember, is that you are never alone… there are people that care about you and your health. The Rainbow Community Center cares… We all care… I care.

It’s would be really easy to just shut down and stop caring… to keep this disease a secret, a dirty little secret that nobody wants to hear about. But the fact is, that if people like you didn’t show up here tonight… didn’t remember what the Red Ribbon stands for… the cycle would never be broken. It is my personal mission to help fight this disease, to educate people about safe sex, to get as many people tested as possible… in fact, it’s my job now. As hard as it is to stand up here in front of all of you and speak of hope and strength, it has to happen. We need to continue to fight. We need to continue to remind people about the red ribbon. We have lost So many lives… We lost people that we care about… people like Chad. And we have to do it for them.

Will you join me in this fight? A fight to get people tested, regardless of their sexuality or the color of their skin? A fight to help those young people who are out their this very minute, making all the wrong choices? It’s never easy. But it has to be done. And I know that somewhere up there, everyone we have lost to this disease is listening and they are smiling down on all of you for being a part of this night.

Never forget the Red Ribbon. Never forget the lives we have lost. Never forget the people still here fighting for this cause, fighting this disease. Together, we can make every day World AIDS Day. And I will be here with you every December 1st until we find a cure… and even then, I will be here. My name is Jimmy Gale… I’m 26 years old… and I have been living with HIV for 2 years… and I’m not going anywhere. I’m still here.


This is a note posted on Facebook by my childhood neighbor, Mike.  I am posting this with his permission (although it was published previously already).

Struggle with Death

by Mike McClelland on Saturday, January 8, 2011 at 8:00pm
 
Some of you who have known me all of, or most of my life, are very familiar with the events I wrote about when I was 18.  This article was actually published in May of 1988.  I hope that everyone will carry away something positive from reading this.  If nothing else, you get an insight into who I am.

Struggle with Death by Mike McClelland

As we walk back into the hospital, my sister Gaylene walks down the hall toward us and tells us that he is gone.  My heart sinks and anger strikes my chest.  As I enter the room, a scent of death is in the air and all I hear is weeping.  I walk over to his limp body and kneel beside him.  I forget that others are there in the room as I hold his hand and begin to cry.  I feel my father’s hand on my shoulder as he tells me, “I love you, Michael.”  I reply, “I love you too, Dad.”

I was 13 years old when my brother Stephen was shot and killed at the age of 26.   Now at 14, I find out that my 22 year old brother, Robert, is moving back from Miami because he is going to die.  I learned this in March of 1984 and at the end of May, he came home.  It was a good day for me because I hadn’t seen him for almost a year, yet it was also a sad day because it was the day that my brother came home to die.
I helped Robert unpack and move things into his room, and after we were done, we sat around and talked as we set up his VCR and stereo.  I had realized that he was going to die, but I didn’t want to think about it until I had to.  In school I never talked about him dying,  and at home I didn’t think about what the words meant.  When I said the words it was as if they were the names of food, or people.  I didn’t think about what I was saying.

My brother had a lot on his mind, as did we, but he had a lot of things that he intended to do before he left this world.  He needed to get his relationship with God back together and make things right with his friends and family.  Robert and I became much closer than we ever had been during this time.  Closer, because before, our age difference of eight years had been a barrier in our relationship.  He wanted to be good to everyone and he tried to make friends in any way that he could with the time that he had.

The disease that Robert had was incurable, but he tried to use drugs that would fight it.  Three times a week, our father would take Robert to San Francisco to get shots.  Over time the drugs didn’t help much and sores showed up on his skin, which he tried to cover with make-up.

As time went on and we all got closer and relied upon God and each other, Robert would do things for me and take me places so that we would become closer than ever before.  Eventually Robert became very close to God, and I would pray at night for that to continue.

I remember many things about Robert during that time, mostly trips to the mall, but most of all I remember the hospital.  A few times when he would get really sick, we would take him to the county hospital in Martinez where he would be treated.  More trips would come as time went on, and by November, 1985, he was put in for a couple of weeks.

Things went bad on Christmas Eve of 1985.  He had chest gas, so someone told him to drink beer to get the gas up, but the medication that he was taking wasn’t supposed to mix with alcohol and he had a bad reaction.  On Christmas he went into the hospital for the last time.

On January 14, 1986, he lost his ability to speak, but he still communicated with us using his hands and eyes.  My brother-in-law and our pastor took me to dinner, but all I could think about was Robert and getting back to him.  When we returned, my sister told us he had died.  When I entered the room, all I saw was pain and mourning and I began to cry as I knelt beside him.

On Friday, January 17, 1986, we buried him.  I think that day will be clear in my mind forever.  The pain and suffering that we experienced will probably dim in time, but I think that Robert would have wanted us to think about the good times, not the bad.

Now at eighteen, as I look back on the events that happened then, I realize that God decided how I would face my brother’s dying and maybe I wasn’t supposed to be there.  To this day, I always think about Robert and how his face had lit up in the sunshine just before I left him.  I believe that he saw heaven then and still believe it now.

I struggled with the fact that my brother died of AIDS and it was a struggle for everyone involved.  I’m getting over it now, but I still have had to call on God’s help to do it.

Addendum:  This was written during my freshman year in college in the Spring of 1988.  Since then I have also lost my sister Diane in 1993, my father Wesley in 1995, and both of my grandmother’s since.  My grandfather’s both passed before I knew them.

Facing the death of a loved one is a very difficult thing to do.  Hold to those friends and family that are there with you, facing it as well. 

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HIV and AIDS affects us all so I hope that you will consider contributing to the LifeCycle link I provided above.  If not, I hope you at least walk away with a new understanding of the disease and appreciation for what people living with the disease and their families are going through.