Cross Post

originally posted this picture on the main blog… but some people felt they couldn’t comment… so I’m posting it here again for freedom of speech.

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Is it any surprise?

What I ate yesterday..

  • Special K w/ Red Berries w/milk
  • 2 cups of Hills Bros Sugar Free Cappuccino coffee drink (mix)
  • A few pieces of Teriyaki Jerky and a handful  mini marshmallows
  • A philly steak hotpocket and green beans marinated in Balsamic vinegar
  • a small bowlful of BBQ potato chips
  • half a hamburger patty made with onion soup mix, and a serving of pasta made with bacon, peas, grilled onions and a Parmesan white sauce.

Soooo… is anyone surprised that my ankles look like sausages ready to pop (CANKLES anyone?) and that I’ve gained 8 pounds since I stepped on the scale a few days ago?

Today’s plan? Lotsa water. Nothing out of a box (except cereal), tea, veggies, fruit and more water.

Ugh…  my skin itches… maybe cuz it’s wanting to split!

no matter how I word this

it’s gonna sound “wrong”… bitter, selfish, bitchy…

As you know… (because every blog, message board and avatar is PINK!)… October is Breast Cancer Awareness month. I love how people get involved and participate so whole-heartedly at great length. I love the “manly men” at rodeos, football games, Nascar races buck up and wear the color usually saved for little girls, sissies and queer bois. But, ya know… I’m a little… hm… concerned maybe is the right word. Frustrated. Irritated? Pissed off isn’t the right term… but I’ll be damned if I can’t think of how to describe what I’ve been feeling. Let me see if I can explain.

I told a long time “internet” friend of  mine over the phone a week or so ago about my diagnosis. We’d gone through our weight loss surgery’s together. She’d had a blockage/twist in her gut and had to have part of her.. i dunno… intestines, colon (do women have colons? must go google that!) removed and spent a few days in the hospital for emergency surgery. This was all soon after my hospital visit in 2007. I’m sorry, Jodi, if I have that wrong… forgive me… my memory is for shit lately.

Earlier that year she’d come out to California from Pittsburgh, Penn and we did a weekend at North Lake Tahoe. There was a group of us, but she and I had some bonding time and our friendship was special. When I gave her the news, she was surprised yet still supportive… honest when she didn’t have to be and shared some stuff with me that made me not feel so “out there”. But one thing she said has haunted me since our phone conversation… “HIV? AIDS? That’s so 1990’s!”

It’s true… people DON’T talk about HIV and AIDS anymore. People use condoms so they don’t get herpes, syphilis or pregnant… not because they might get AIDS. Most of the gay boys I know use condoms every time, or at least put off the vibe that they know they need to be safe. It’s just the norm (thank goodness). Needle exchanges are no longer a much publicized issue.  Even in Law Enforcement and Public Safety, more people are concerned with the Hep’s than the HIV.

People joke about “Swine Flu Monkey AIDS”…  When I was still trying to figure out what was wrong with me, a lot of people laughed and jeered “OH NOES! YOU GOTZ DA’AIDZ!”…. and I would laugh right along side them thinking “NO ONE GOT AIDS ANYMORE! chuckle chuckle, ha, ha, THANK GOD I TESTED NEGATIVE lawz!”

Except I’m not negative. Ya… my body doesn’t create the antibodies that show up in tests, so all that time I assumed I was negative… but I do have AIDS… I am HIV positive… and it could be a year before my numbers get me to a state where I can say I’m “just” HIV positive.

If that part doesn’t make sense… I’ll try and give you a Readers Digest version of how I understand it. AIDS is like an everyday cold… you have it when you show symptoms of it. It can come and go and will come and go… sometimes it will be mild, like a case of the sniffles and a sore throat… other times it will be “up all night with a hacking cough and fever”. HIV patients have AIDS when their numbers are skewed, but more often they show symptoms of opportunistic infections. See… learn something new every day.

Anyway… back to the beginning of my post. I’m all for supporting Cancer Research. I hate that people get Cancer. I hate that those who have to live with it are having to deal with icky treatments. I hate that those left after someone looses the fight have to live without their loved ones. I hate the Cancer.

But, and this is where I feel selfish, I want the awareness of HIV and AIDS to get the same support. the same love, as Cancer, without judgment… I have a red ribbon on my twitter avatar and I’m sure no one has ever noticed it. But if I were to start a huge campaign regarding my disease… I just don’t feel it would get the same support as Cancer. That makes me sad.

I don’t want people to have to choose… please don’t get me wrong… but I want the Susan G. Komen foundation and the Ryan White foundation to get equal press coverage. I want people to know that HIV and AIDS is out there, still... and it can “hide” in your body for 8 years without showing any symptoms… I want people, no matter what their sexual preference or assumed commitment status, to get an HIV test yearly… just like a mammogram.

I know right now if I started campaigning for HIV/AIDS research strongly, as strongly as some of my peers do for cancer, people would put two and two together… and the judging would start. “She was kinda slutty there for a bit…”, “Remember how drunk she was getting all the time after she and so-&-so split up?…” People will question if I used drugs… if I was into, dare I say, anything deviant. The only thing that won’t come up, is if I’m a gay man… but people will wonder if I was ever with a gay man… it’s already been questioned… and the answer to EVERY SINGLE ONE of these questions is I don’t know. I don’t know who gave me this… and whoever it was… obviously wasn’t all that honest with me about his past… so I won’t ever know… all I know is I have it… and I want the vaccine out sooner than later. I’ve accepted there is no cure… now let’s work on stopping it from going forward.

How do I do that? Do I swallow my pride and just… do it? It’s something I’ve been thinking about. Every time I see a pink ribbon or a request to sponsor someone in a Cancer walk… a tiny voice inside me screams “what about AIDS?”… and I need that voice to shut up.

This isn’t a contest… this isn’t a race. That disease and my disease aren’t better, worse or for that matter much different. If caught early and treated… those diagnosed can live a long, healthy life…

That being the case, how do I “get over” feeling jealous that Cancer is getting more support?

And, obviously, this is one of those posts I probably need to print out and show a professional….

Today? Not so good…

I haven’t been sleeping well lately. I have a sleeping pill I can take, but wasn’t really wanting to take them every single day. I did take one last night.

Today… I feel… well… I feel like I did before I changed meds. It’s been 2 weeks of “almost too good to be true”, and now the ickyness has returned. I’m guessing it’s just a short term thing… (TMI) I started my period… have been eating too many carbs, sugars and not nearly enough protein. I got the shakes, dizzy and could hear my heart beating in my ears, which made me think I was congested so took 2 sudaphed instead of just one…

I’m going to chalk this up to not doing what I’m supposed to do and not be too concerned that it will last more than a day or two.

I felt feverish and hot, but never had a fever. Confirmed that with 3 different thermometers. I was so convinced I was “getting sick” I’m sure some of it was psychosomatic.

I feel bad because my mom leaves for England tomorrow for 6 weeks and I know she is worried about leaving me alone. I feel bad because I haven’t been able to help her prepare for her trip… I usually give her money when she goes too… this time… not so much… no income = not able to pay own bills let alone contribute to slush fund.

Which sucks, because that means she won’t be able to bring back the awesomeness that is UK Candy. I’m sure she’ll find a way to get me some tho…. mmmm… mouth is watering as I type… I think I need a snack…

Anyway… so today wasn’t a good day… and that’s ok, I’m sure I’ll have more in the future. I figure if the good outweigh the bad, I’m blessed and that’s all I can hope for.

it’s good to talk.

Outside you guys, I’ve only told some of my internet friends about my diagnosis. I’ve told exactly one of my friends. My best friend. Since I’ve told her a weight seems to have lifted. So I gave my mom permission to tell her best friend… she cried afterwards and said the same thing. It feels so good just to be able to talk about it. The fear of the unknown and the comfort that comes from someone being supportive.

I haven’t told any of my ex-roommates, who are my closest friends.

I’ve told one of my grandparents, my real fathers mother. Only because she’s been concerned about me for years, since I started getting ill.

I have a lot of family in both England and Australia, I cannot decide whether to tell them or not. They don’t really need to know… I’m not even sure if any of them really know I’ve been ill.

My Nana in England passed away yesterday. It wasn’t a surprise, but it hurt just the same. I wish I could have visited her one more time… guess I need to remember that and take opportunities as they come instead of “maybe later”.

My best friend’s birthday party is this weekend, and my second best friends actual birthday is Saturday as well… I would give anything to be able to drive down and spend some time with both of them… but my WBC is still in the toilet, so I’m stuck here… at home.

Now since I’ve been feeling better, I moved my laptop desk, with my laptop and 2 hard drives out to the living room so I could sit out there while mom cooked and canned and baked and did all the end of summer stuff. I’d check blogs, email, facebook, twitter occasionally from the couch, and then when I felt up to it I’d help her of crochet a bit. I sometimes work on pictures, backing up my mom & sisters cameras. I’ll play WoW for a bit or check message boards. Sometimes I’ll StumbleUpon or see what’s hot on YouTube. The normal stuff we all do, but instead of being at my desk, in my bedroom, I was able to have conversations with mom and who ever was over at the house.

My step-father, who is the only dad I’ve ever known… is on vacation this week. I guess he thinks there’s too much “stuff” in the living room… so I’ve been… banished, for lack of a better term, back to my room… talk about a blow. I finally feel good enough to get out of bed, but still have to stay in my room… it upset me… it upset my mom… but he’s a selfish man who wants things to never change.

He doesn’t understand how we (my sisters and I) can spend hours online… he’s never used a computer… I get that he doesn’t know any better… but him watching TV is perfectly fine… whatever… I like my room just fine… it just hurt my feelings at the time.

I think I made my mom feel guilty tho… I don’t have enough USB ports, so she’s looking for a HUB for me… if I’m gonna be in here full time, might as well be able to hook everything up right? THANKS MOM!

not to be overly dramatic…

but when you hear your doctor say “if you wouldn’t have come in with a ‘sore throat’, you’d probably been dead in 3 months” makes you change the way you look at life.

I don’t want to be a bank teller. I was good at it… I’m friendly enough, and smart enough… and in this town it’s one of the better jobs available. I’d be lucky if the bank hired me back when I’m released by the doctor to go back to work. Before I was diagnosed, but already feeling like shit I kinda looked forward to my job being easy for the rest of my life… I mean how hard is it to do basic math all day long? (sorry, but entry level bank teller is a pretty basic gig).

Dream job? Travel…  Meet people… take photo’s and tell stories… all with none (if any) of my own money and enough left over to have a place to lay my head and pay bills.

I’ve been asked if, when I feel better, I want to tell my story. Not enough people realize that HIV can be transmitted by a seemingly healthy man having sex with a seemingly healthy woman… it’s still stigmatized with gay men, prostitutes and drug users. There has been no talk of money… and it’s still a while off… my numbers still suck. No one expected any improvement yet, but mine have gotten worse.

My WBC is 1.2. I know I’ve mentioned being “on isolation”, but it was hammered into my head on Tuesday that I have to stay “healthy”. I CANNOT sneak off to Taco Bell for an 89c Chicken Gordita or even to to the pharmacy if I need more meds. A simple cold could kill me… turn to pneumonia overnight and fill my lungs with infectious fluid that my body could never fight.

So… if and when my numbers get back to normal. I may look into the speaking thing. I’d love to tell this story. While there was a time I told my mom I wanted to be a motivational speaker, I never felt I had a good enough story. Losing 150 pounds was awesome, but it was, for lack of a better term, easy. There were moments that were difficult, but I never questioned my decision to have weight loss surgery. The procedure went perfect, I had no side effects, (unless you can consider the second emotional puberty I went through), I lost the weight in 10 months, I’ve kept it off… it’s normally not that easy for most people.

I had a wonderful childhood… a great education… and was lucky getting new employment whenever I decided it was time to move on. In fact… all the “shit” that’s come along in my life, has happened since that hospital stay in 2007.

So I guess another reminder of “be careful what you wish for” comes along. Instead of crawling from the gutter… I can tell my story about how money and happiness doesn’t mean happily after ever. I went from being a successful exec level making $87K /year in one of the best cities on the West Coast… forgetting about moderation and being safe. Even if I never broke the law, did an illegal drug, or anything considered deviant… to being 37, living with my parents, unemployable and depending on them for support…. life threw me curve ball.

Now to find a way to turn it into a home run.

I woke up at 4:58am.

This is after going to bed sometime during the 10 o’clock hour and BARELY recalling the end of The Mentalist.

You know what that means? I’ll tell you what that means…. almost SIX HOURS of sleep… all at once…

I’m not even mad that I’m awake this early!

I know I’ll end up napping. But, you know what? I’ll tell you what… TOTALLY OK WITH THAT!

SIX HOURS PEOPLE!!!!!

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