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!!!!!

Would it be cliché to say…

what a difference a day makes!

and a med change!

I feel good… not awesome, not great… but good!

It has been weeks (if not months) since I’ve been able to say that.

ALMOST no nausea… very mild headache…

Day 2 after stopping theNorvir, Reyataz and Septra and switching over to the Isentress and I feel like a new person.

Wooo to the effin’ hoo!

Lab Results

Does anyone want me to post the numbers?

I will, I just don’t know if anyone will acctually comprehend them.

If there is anyone that does read lab results and wants to explain them to the rest of us… that would be awesome.

If not… that’s ok too…

Dr. appointment today.

Saw a panel of 4 specialists…

They were a little conflicted on when I may have been infected. Split down the middle.

Half  (Cat 1) seem to think I’ve had HIV for years but fell into that 4% who don’t produce the antibodies and therefore don’t test positive.

Other half (Cat 2 )seems to think that my hospital visit in late 2007 was due to the initial infection. An “Accute Retro Viral Reaction” is what I wrote down…

I want to believe the second group… I even have my suspicions of how/who I may have been infected by…

But, once again, I have to face the fact that I will never know for sure…

They took me off the (evil evil) Norvir and it’s co-hort Reyataz… I’m going to switch to a brand spanking new HIV drug. Isentress. The new specialist (Cat 2) said he has yet to have any patient have any adverse reactions to this med…. do you SEE me doing cartwheels?

I stopped the Sulfa drug (YAY! NO MORE ITCHING!) and I thought I heard them say they were going to replace it with Dexone… but I just looked it up and that’s a steroid, so I’m thinking I wrote the name down incorrectly. It will be available at the pharmacy tomorrow… I’ll call and confirm all that.

I’ve got to have a Tetnus shot, a Pneumonia shot, a flu shot and a dental exam… but not until my numbers come up just a bit… they’ll be tested again in 4 weeks. Mark your calendars!

Other than that, it was a pretty low key 2 hour appointment… a lot of talking, re-assuring that I knew what was going on in my body… a little discussion about my emotional well being.

The nutritionist wasn’t able to be there today, but next time I’ll get some time with her as well.

My lungs were clear as was my mouth, but they still gave me med’s for if and when I ever feel like I’m starting to get a flu bug or if the thrush returns.

They went through ALL my meds, said the ones I take “as needed” don’t conflict… so my regular allergy meds and vitamins are all OK.

The only concern is keeping me well… as well as can be expected, considering my numbers. So I’m still documenting my fever’s, anything higher than 101 and I call them. So far it’s maxed at 100.7. I’m also on “isolation” until December… go go computer entertainment, hulu, and crocheting…

All in all… a good day.