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.

Telling Grandma

probably the hardest thing about this whole ordeal so far…

bad pills… BAD… go to your room!

I have never been so happy to find out I’m allergic to something.

It’s a mild reaction, but the itchiness, and possibly the fever/headaches… can be atributed to the sulfa drug… today is the first time it’s shown any visual/physical symptom… itchy red spots, like freckles.

I was watching a Sept. 11 tribute this morning and when I got goose bumps everywhere, I thought I was gonna have to take a potato peeler to my arms and legs they itched so bad.

This is good news, because that was just a precautionary anti-biotic… not an AIDS/HIV drug…

I would do cartwheels if I wasn’t covered from head to toe with hydrocortisone cream…

And so it goes…

I wake up… some days it’s at 7:30am, others almost noon. While laying in bed, I’ll take my temperature… which is a huge annoyance, because it’s almost like I rely on that number to guage the rest of my day. Fever days usually equal shitty days.

I get out of bed… almost always with a dizzy spell due to low blood pressure…

I pee… I wash my face or shower… and then I attack the thrush that has grown over night in my mouth, thoat and esophagus…

  • I rinse with a hydrogen peroxide mouthwash
  • brush with a stupid fancy toothbrush that hurts my mouth
  • floss
  • scrape my tongue with a plastic tourture device
  • pour a some of that nasty tasting yellow mouth wash (cut with water, don’t tell my dentist) into my waterpick and rinse everything, making sure to get the very back of my throat
  • gag, sometimes more than once
  • blow my nose and wipe the tears from the gag
  • rinse for 30 seconds with Peridex (which will eff up my taste buds for the next hour, at least) to help my gums stay attached to my teeth
  • finally… swish (for as long as possible, they say) and swallow (eww) a dose of Nystatin.

I then venture out of the bedroom/bathroom area and wander to the kitchen to get a big glass of water that will stay with me for the rest of the day. Somedays I’ll refill it twice, other days I’m forcing myself to finish the glass. With this water I take a sulfa based anti-biotic, a mega-viatmin, calcium, vit D and a vit B. and pray it stays down.

Depending on how I’m feeling… breakfast will either be fruit and cereal or eggs and toast. What I mean by that is based on what has fallen out of my ass the previous day… some days it’s low fiber with bananas and toast…. other days it’s pure protien… some days it’s dried fruit and cereal.

NOW… depending on how THAT meal made me feel. I’ll either get online and play with the computer… or immediatly go back to bed for a 1-2 hour nap.

Either way, once I’m up and going I usually want a cup of coffee… which I make, as I have for years, light with one splenda. The cup of coffee will sit at my side, undrinkable. The taste just isn’t the same as I remember. Which is a good thing because I’m supposed to avoid caffine… but sad… I really really love(d) coffee.

So the coffee sits in my favorite mug… and I put on the kettle for tea. I have a buttload of choices, but the only ones tasting any better than the coffee are the minty ones. All the herb/fruit ones taste like they put dust in the bag… and I loved them before… so they sit, and wait… one day hoping they’ll taste good again.

Lunch time is a battle of will power. It is, for now, when I’ve decided to take my anti-virals: Reyataz (Atazanavir), Truvada (Tenofovir/FTC), and Norvir (Ritonavir).

The second day I took them I immediately gagged them back up. There is nothing like puking $100 worth of medicine into a toilet. Now, I take them towards the end of the meal… a meal I could possibly be tasting a 2nd time if they want to come back up.

I fight with myself every afternoon. I look at my lunch options and think “what would it be like to puke…” So far, I’m sticking with soups and crackers. Today, I almost ventured to a white bread & tomato sandwich (Best Foods mayo ONLY) because the fresh grown tomatos picked from the garden are awesome. At the last minute went with soup, Chicken & Barley in the red can… I didn’t puke, it was awesome.

I then usually go lay down and fall asleep, almost immediatly, for about an hour.

The rest of the day depends on how the beginning went.

If there’s been no puking or fevers I’ll sit at the table with my parents and read the paper, go throw a ball/bone the dogs for an hour, (I sit, they run… it’s a good match ) or go pick veggies out of the garden and water all the flowers on the deck & patio. I keep threatening to drive to the park and feed the ducks… but I’m supposed to be isolated, so I’ve stuck to the rules for now… dammit.

If I’m running a fever (4 out of the 7 days so far) I sit with a electrolyte drink and ice and force myself to stay awake so I can sleep that night. Doesn’t always work…

All through out these day… I’m itchy… my skin from the bottom of my feet to the top of my scalp itches… not constantly… random places… odd times… I’ve yet to find the trigger there. I’ve used Lubriderm Sensative and Hydrocortisone cream. I read an article to use Aloe, which I have a ton of, being a red-head and all, so maybe I’ll try tomorrow after a shower.

Dinner is good… I don’t have to take meds… I just get to eat. Granted, most of the stuff doesn’t taste that great, but at least I’m pretty sure everything will settle down nicely and I’ll enjoy the meal.

I’m usually craving bed by 8pm… Bedtime is pretty easy… another mega vitamin & sulfa pill, maybe some benydryl depending on how itchy I still am. I then have the joyful expierience of going thru the mough regimine again…  woo hoo… parrrrtyyy..

This is when it gets interesting… I can either lay down and watch TV til I fall asleep. OR I get, what I will refer to as, the twitches. This, at first, was rather entertaining. Imagine someone smacking random body parts throughout the night. Similar to the Hypnic Jerk, but not my entire body… it’s no longer funny… now it’s just annoying.

So… that’s a wrap up of my first week on HIV/AIDS drugs…

They say it’ll get easier, better… that life will one day have a resembalance of normallacy.

I can’t wait.

The war has started…

It’s absolutly amazing… this body of ours…

The pills do not want to stay down… at all… so that’s a fight I deal with once a day… I suppose it will get better, but right now… ugh…

The other two things taking a toll on me… the itching and the twitching… I suppose I’ve been bitching for so long, the rhymes had to come join us.

The itching is odd because there’s nothing physical/visual to itch… just random itchyiness.

The twitching is almost surreal… it’s like some one grabs odd body parts and smacks them. I’m gonna have someone watch me when I lay down for bed and make sure it’s happening and I’m not just imagining it.

This weekend is the first time I’ve been alone since the DX… the family has had this 3 day holiday planned for a while… but we’ve got confirmed H1N1 cases in the area, so I’m stuck at home… with a prescription to fight the swine flu, just in case.

I hope everyone else enjoys the weekend…  I’m gonna go nap… (I anticipate saying that a LOT now)