24 February 2014

I'm Frigid

OK, OK, OK...for those that know me most know that the title of this post is more than an accurate statement. While, still the life of the party, I have become a frigid queen in my mid gay life. However, this post really has nothing to to do with personality and more to do with my actual body temperature. I was recently hospitalized again for PCP and an upper lung infection. Yippee! Just another infection which landed me in the hospital for another 3 days. On the plus side of things I finally have enough admissions to have a new hospital wing named after me. Well maybe not but it's in the making :) During my most recent vacation to Club Med my doctors brought an interesting concept to my attention. Despite my obviously being sick I only had a fever for a brief period of time ONCE. The remaining time it actually was below average. I couldn't quite understand why. If I have an infection my body should be running a fever. Right?!? Nope not in my case. Apparently, if you are severely immunocompromised your body cannot properly stage a fight to fight off an infection. So that means my body isn't really trying to fight off infections. My body solely relies on the anti-virals and antibiotics they feed me in the hospital. It makes me feel that the end of time is nigh. It's coming. Coming sooner maybe rather than later. But I digress. We're not promised the next second, let alone tomorrow. In the words of Estelle Getty as Sophia Petrillo "I'm living for the day pussycat!" Hugs and love, James

14 February 2014

Strike 3 Your'e Ou......Take A Walk?!?

I'm a baseball fan. No doubt about it. GO SOX! As I was walking or limping home last night I got to thinking about my general overall health over the years. It was a lot to take in on a 10 minute walk. But what got me to thinking was how many times I have fought and ultimately one against the odds. In 2001, I took an overdose of antidepressants, and spent days in a coma. Just when the doctors told my friends and family they were no longer going to try and bring me out of the coma because the seizures were too intense, I beat the odds and opened my eyes. Despite their concerns of having permanent brain damage, having to learn to walk, talk, eat again, none it it was applicable. Phew, dodged a bullet with that one. In 2003, after completing my second bout of chemotherapy, I met with my oncology team and the news wasn't good. My 5 year plan was only at a mind numbing 25%. Yet here I sit in 2014. Phew, really dodged a bullet that time. In 2006, I was plagued with multiple infections, pneumonia, lost eye site in my left eye, and lay dying of AIDS related complications, my doctors once again said..."He may not leave the hospital this time." Yet despite the odds I left just 12 days after my admission into the hospital. OMG, that bullet was really, really close. It grazed my nose in fact. In 2014, I met with my primary care team to discuss the results of my latest bone marrow biopsy. "James, we don't know what to say!" You've got one maybe two good years left." BOOM direct hit! I often get into deep discussions with my Mother, specifically, about her just wanting to believe that there is a miracle just waiting for me in the wing. She questions my ability and my will to live. She questions my "Plan B" (for more info about Plan B, I must refer you to the movie, It's My Party) motives. I think that if there is anything my past has shown and ultimately proven about me, it's that I am strong. I OBVIOUSLY have a strong will to live. Hell I should have been dead 13 years ago. But there was something in me. Even while in a coma, a will to live and carry on my life. I had things to do and a purpose to serve! With my most recent diagnosis I can say one thing and one thing only. I am at peace. I knew deep down in my bones during the first 3 end of life predictions given by my Doctors that they were wrong. I knew I was going to survive. I didn't have tangible evidence of it. It's just something that I knew. With this diagnosis at a time when people would have been frantic and upset I was at peace. I know that my time is coming. My will to live will always be there. Even as I draw my last breath and go into the ever after. My will to live is there. People often mistake the will to live and the issue of simply being tired. I'm not resigning because the will to live isn't there. It's not a question about that. It's the question of in reality what is this broken down, decriped, failing, falling a part body able to fight. And I think it's obvious when I end up in the hospital 4 days over a cold, it's really not willing to fight anything anymore. Despite my viral load being undetectable (YAH!!!! for the first time in 5 years) my CD4 count is never going to get above 150 again. And even with anti-retro viral therapy it's not going to help with preventing infections. I say all of that to say this. I don't really know what the future has in store. Is it possible that my gut feeling is wrong? Absolutely. I have been wrong in the past. Do I think I am wrong? No. And I am at peace with that. What I do know is that no matter what I live today for today and will face tomorrow when I open my eyes after sleep. My days will be filled with peace. My days will be filled with love. My days will be filled with friends, family, and you my readers. Peace and love to all, James

02 February 2014

What's A Rhino Got To Do With It?

So it would of course be par for the course so to speak that as I attempt to get this up and running again I would be hit with illness. Usually my hospital visits entail being told that I have a virus of some unknown origin never given a name. I've come to accept that as reality. However, when I called out of work on Tuesday and decided that since I am in Management now I probably should have an excuse from a doctor when I call off I made the trek downtown to see my doctor on Tuesday. I got in his office, he finished the exam, politely excused himself came back a few minutes later and told me that he felt admission to the hospital was the best course of treatment. I agreed, as I could hardly walk without feeling like I was about to fall out. I, however, would've never told him that. So I was hospitalized with a viral infection pending results of the flu/viral swab and given antivirals and tamiflu as precautionary measures. On Friday was told that my viral swab came back positive for Rhinovirus, type C, to be specific. I was released from the imprisonment of the hospital. It's amazing how a common cold knocks an average person on their ass for a few days and for others, like me it can mean an extended stay in the hospital. C'est la vie. On the plus side I did get to have two rather great personal experiences. The first was someone whom I have grown to care a great deal for braved the cold and uncomfortable layout chair to come and spend the evening with me one night. The other came from someone I have recently developed a great relationship with. And who would've ever thought. First, it's a female! Secondly, she's my new minister at First Unitarian. Teri came and brought me provisions. Which for those of you who know me, know that means one thing! Reese's Peanut Butter cups. However, she went above and beyond and brought every kind of Reese's you could imagine! I am of great confidence that it was the chocolate that aided in my expedited recovery. My new minister and I discussed many issues and for the first time since I was a young teen I feel like I have true Ministerial Care, compassion and guidance. While I will go into the details of certain aspects of our conversation at a later time I can't discuss them on here now as they are rather sensitive matters that require face to face discuss with members of family before I make them public. I've learned more than once that family members finding out things online ISN'T the best approach. That is unless you don't speak period. Then I guess it wouldn't matter as the aforementioned subject wouldn't come up in conversation. So that's it for now. Still trying to get over the last little hump of this nasty Rhinovirus. Until next time! Peace and love, James

24 January 2014

Choices, Choices, So Many Choices

I got an e-mail in June of last year from someone who follows my blog asking me to pick my top 3 favorite blog postings. While, I may think it odd someone would want my opinion on my writing it's certainly not the strangest thing I have ever been asked. You have been patient and after 7 months I am going to share my top three favorite blog postings. # 3- February 1, 2010 "My Name Is James" http://stillarriving.blogspot.com/2010/02/my-name-is-james.html This blog posting is in my top 3 because it is the day that my blog truly became what I portrayed it to be. An honest picture of what my life was and had become. I remember sitting on my couch and as I typed the blog out I felt like a liar. Here everyone had applauded my full honesty and disclosure for 6 years but yet I hadn't been fully honest. And while I was scared of the potential backlash when I hit "Publish" button I felt a weight lifted off my shoulders. Which is why this landed my # 3 spot. # 2- June 26, 2006 "A Mothers View" http://stillarriving.blogspot.com/2006/06/mothers-view.html This really touched my heart because it brought words into action by my mother. When I came out my mother and I didn't speak for a number of years. It was the stubborn aspect of both our personalities that fueled our separation. Neither one of us wanted to budge and say they were sorry for how we handled the whole coming out thing. We both could have handled the situation better, have come to accept that, said our sorrys and now we have a great relationship. Just when we thought our whole coming out experience was behind us I had to go and have another one. Often times in Uber Conservative families, or families who don't have an open view to sexuality when you come out it's not uncommon for the word AIDS to be thrown out. There were a lot of words thrown out when I came out and I am not sure if AIDS was one of them. I knew deep down that once I came out as gay the overwhelming fear of my contracting HIV was a thought my mother kept in the back of her head. So when I found out I had HIV I didn't tell her. She wasn't privy to my blog address. My sister, may she rest in peace, never could just keep a secret (she was one of the 2 that had the address). And in 2005 during my multiple hospitalizations a few days after I was discharged I got the dreaded call. "Son, do they know what's going on with you? Why you are so sick all the time." My answer was simply that my body developed an immune disorder because of all the chemo and I couldn't fight off infections. However, during our conversations I dropped keyword hints like "T-cell", "viral load", "Recurrent pneumonia" knowing that this woman would surely find her way to webmd.com and discover my truth. This was certainly a time I regretted that my mother was no longer the woman who couldn't even turn on a computer. It was in March of 2005, 2 months after my diagnosis, that I was sitting at home one evening and my AIM chime went off. I got up from my bed walked over to my computer to see an instant message from my mother that simply said "I know." Well I certainly had no question what she knew. My mother was ignorant when it came to HIV. She never had a reason to know anything about it. My mother wrote a letter to the editor of her local newspaper in her small town about how HIV/AIDS isn't something that just affects city people. None of my mothers neighbors would have ever imagined that she was impacted by HIV/AIDS. And so they were as well. I visited their houses, played in their yards, ate at their table. And so even if they didn't realize it they too were impacted by HIV/AIDS. Way to go Mom! # 1- June 15, 2009 "Why I Really Fight HIV" http://stillarriving.blogspot.com/2009/06/why-i-really-fight-hiv.html For me the reason why this is # 1 is obvious and simple. Despite all of my rage, anger, and profanity my blog for whatever reason gave people hope. When I was down in the dumps, and distressed I got uplifting, loving, and hopeful messages from you. If people were inspired and got something out of my trials and tribulations then they were well worth it. We may not can change the situation but we can always change how we respond to it. And I thank you all for showing me that. Hugs and love, James

23 January 2014

To Everything There Is A Season

So the title for today was an inspiration I received from my Mother. Actually, the reason for my posting today is because of her. I am going to share the passage from Ecclesiastes 3 1-8. 1 For everything there is a season, and a time for every matter under heaven: 2 a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; 3 a time to kill, and a time to heal; a time to break down, and a time to build up; 4 a time to weep, and a time to laugh; a time to mourn, and a time to dance; 5 a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; 6 a time to seek, and a time to lose; a time to keep, and a time to cast away; 7 a time to rend, and a time to sew; a time to keep silence, and a time to speak; 8 a time to love, and a time to hate; a time for war, and a time for peace. In my circle of friends and family it's not uncommon to hear, "For everything there is a season." I hold on dearly to this philosophy. I feel this to true. Sometimes the unpleasant seasons last as long as a Chicago winter, but I digress. When I started this blog almost 9 years ago I gave the web address to 2 people. A very close friend and my sister. As long time readers of this blog may remember 2005 was a really really tough year. I was sick, in and out of the hospitals, and I really didn't feel like talking to anyone. Not friends. Not family. However, I could blog about how I was feeling. It saved me the trouble of having to recount time and time again how horrible my doctor's office visit went. I could do it once and they could see how I was doing. I felt a liberty on here in terms of expressing my anger and bitterness that I couldn't and wouldn't verbally do. And somewhere along the line I developed a following on here. At one point in time if you typed HIV blog into Google I was number 1. Even though I don't post on a regular basis I do come back often and read all of your comments and see how far I have come. Somewhere through my tears, anger, and bitterness people came here and found something miraculous. They found hope. Even in the most angry and bitter times honesty is what gives people hope. I must confess I do Google my name a few times a year. In the blogosphere people have commented that my blog isn't active because they hope that I am living a full, active, healthy life and I no longer need this as an outlet. This past year was one that actually paled in comparison to 2005 for me medically. I am 900 miles away from my Mom, Dad, siblings and I did what I do best I shut them out. I didn't want to talk about it. If ever there was a need for this blog it was 2013. But to everything there is a season. And I used that as a cop out. I did a disservice to my friends, family and to you. It saddens me that this blog once considered to be a beacon of hope to so many people and a positive outlet for me has extinguished. There is always an excuse. I work a full time job, I have doctors appointments, I have..., ..., And today I came to realize that my excuses are unacceptable. Granted I never set out to be the "Poster Child" on living with HIV/AIDS but I was. And at one time it was my purpose. It feels as though sometimes my only purpose is to exist only in between doctor's offices and hospitalizations. I lost my mojo. But don't worry! I may not can change my health conditions but I can change my purpose. I am going to start this blog again. It may only be one or two posts a week. Hell, there may be weeks I post everyday. But, I am going to start sharing with people again. Because the last time I checked the statistic it was 0,000,000 people cured of AIDS. And honestly I hope that my blog in the beginning acted as a siren to people that HIV/AIDS is still a horrible disease and they need to protect themselves. While, they may not have had the same journey I had it was certainly a possibility. To everything there is in fact a season. And mine is coming back. Hugs and love, James

05 May 2013

Still alive and kicking!

Hello out there! Well A LOT A LOT A LOT has occured as you can possibly imagine since June of 2011. And we've a lot to cover. First of all I have kept up and checked on occassion in regards to old blog comments and what other bloggers have said. So in that regards I have been around. This blog was/is a wonderful outlet for me to come to especially when I am sick. I get to have random and crazy rants and say things that I WOULD never never say in public because for some reason it's just more acceptable in writing. It has it's purpose and it's time. I have found my true calling in life. No, it's not being a porn star, although in my teens and early 20's I was thinking about it. I started Home Depot about a year ago. When hired I started on the overnight freight team, working 9:30 pm to 6:00 am shift. I was there for 7 months and then placed in the Hardware and Special Services departments. And there I have stayed. Home Depot is an ABSOLUTELY wonderful company to work for. They treat their employees really really well. When I was part time I had full benefits (limited but benefits none the less). So I was able to get healthcare insurance. In January I was made full time. Yah! In terms of relationships I found myself single again AFTER A LONG LONG time of being with Chad. In January of last year Chad and I officially got divorced and in May of the same year he relocated back to GA. We still talk on occassion. I wasn't entirely sure that I was ever going to be able to get over that relationship and actually move on. With time comes healing and with healing comes opportunity. I've recently started dating someone after over a year of being single and essentially sexually non active. This past Thursday while in the hospital I started chatting with a guy I met 2 1/2 years ago and hungout with for a few hours. That's it. As we started talking he talked about maybe coming to visit well he showed up that night and brought me Resse's peanut butter cups. He crawled into bed with me, and stroked my hair, rubbed my arm, it was really nice. The nurse came in to do horly rounding and it was painstakingly obvious they were not accustomed to seeing someone in the bed with the patient. They were uncomfortable because of the IV and blah blah blah. But anyway he pulled the couch over beside the bed and held my hand all night until he had to leave for work the next morning. I REALLY REALLY REALLY REALLY REALLY needed that. I have had OVERWHELMING support from my job and co-workers but I really have missed the support that comes from a significant other/boyfriend. Sometimes you need someone that loves/cares for you on an intimiate level to just hold you and tell you that everything will be alright. And that's what he did. I am not sure if he really realized that was what he did and accomplished by being there but he did and it was absolutely amazing. I was discharged from the hospital yesterday and went over to his place and hungout. I ended up staying the night. I have really missed companionship and though VERY VERY unexpected I welcome it with open arms at this point. I will keep you posted on this as things develop. And speaking of developing... I've not been so hot in the health department. I started getting sick again. And regretfully not just with colds and pneumonias. Oh no! As many of you who've followed me over the years know if I do anything I go all out! In August/September I was hospitalized with a viral infection. That hospitalization lasted a few days. And I managed to stay out for a while. And then January 2013 happened. I went to the ER January 22nd because I was having trouble swallowing, and had lost A MASSIVE amount of weight. My normal weight is 160-170. So when I was at 125 pounds I knew something was really really wrong. My original labs showed that I leukopenic, neutropenic, anemic, and had thrush. And to top it all off I was diagnosed with Celiac Disease. I was discharged from the hospital February 5th. Only to be put back in February 8th for extreme anemia. They do not do transfusions until your red blood count is 6.9 or below. I was at 7.0, so really close. I am fortunate that I didn't have to do the transfusion. I was let go on February 15. And then was readmitted to the hospital February 24th. During this hospitalization it was thought of and discovered that my bone marrow "according to the math" wasn't adaquately producing rbc or wbc like they should. I had to undergo probably the most painful procedure in my life...the dreaded bone marrow biopsy. WOW! If only they could put you out for that. To even try and describle the pain wouldn't do it justice so I won't go there. Just take my word for it...unless you ABSOLUTELY need it avoid it like the plague. Their calculations were correct and the biopsy came back as abnormal. So currently awaiting treatment and bone marrow transplant. Since that discharge on March 4th, I have been hospitalized twice more for viral infections because once again my WBC count just crashes. I do have one of the worlds best and wonderful roommates, Alexis, who also is a close friend and co-worker. She keeps my ass on task. My compliance with taking my medications has never been better and she constantly stays on me about not consuming gluten containing foods. The first reason is she cares about me and doesn't want me to further damage my digestive system. Secondly, gluten gives me HORRIBLE HORRIBLE gas "which comes out like a thug with a baseball bat and assualts everyone around them" according to Alexis. Honestly, I have to agree. Most people can usually stand their own gas. It's horrible when even you try to outrun them. As you can see it's been a LONG almost 2 years since my last post and a lot has really happened. Thankfully I am still alive and although not in the best of health I do have options of really getting better. I have missed you, my readers, and really look forward to reconnecting with everyone. James

15 June 2011

Today's A Big Day!!!!

I have expressed many times that I am humbled by the overwhelming and unexpected success of this blog. Without you the followers and readers this blog would have just disappeared. With you help I have been able to reach people who not only just found out they were positive but others who have in fact been living with HIV/AIDS for years. With many thanks to ALL of you my dream of spreading awareness and giving a face to this illness is reaching a new height.  Yesterday I was contacted by a Senior Producer at CNN who asked if I would be interested in being a featured guest on CNN live to discuss living with the illness and how over the years I have thrived. I jumped at the opportunity and can't wait to share my thoughts with the world.  The segment is scheduled to air TODAY AT 1:45 CENTRAL TIME WHICH IS 2:45 EASTERN.

Yes, I took the first step by creating this blog but since then its been you who have taken the steps to help make my blog, not me, the true success story. I am forever humbled and in your debt for helping to give me this once in a lifetime opportunity. I hope to not only do this blog, my friends and family, proud but most of all I want to make YOU my followers and supporters proud. Thank you again for your help, love and support over the years. You are the true stars.

With many thanks, hugs, and love,

James