Friday, July 22, 2005

The falling rain...

It was a quiet day on the homestead. I slept in today, I could feel the weather was changing, and indeed it did. Peter did the laundry while I slept. HE GOT the job !!! Well done, I told him. I watched a little TV while I sniffed through my blogs looking for a subject to write about.

After "Chef at home," (My favorite cooking show) and Christine Cushing Live, I was tired and decided to curl up in bed and take a power nap... Power naps are very crucial to the constitution of my body on any given day. As I slept I would be roused by noise and the breeze blowing through the window. It had started to rain, oh the joy of lying in bed, listening to the rain fall.

I dreamed, vividly. I had a native dream, i guess it was because I watched an episode of Canada, a People's History, It's on here every day at 2pm. It was a beautiful dream. I spent a good long time in this dream today, probably because it was so comfortable, a cozy bed, the rain, and nothing to do with my day. I know when i need to sleep and I pay attention to it.

I need to address something for a friend... Numbers

To my faithful journey man, we are forced every few months to face the gauntlet and visit the vampire who sucks her phials of blood from us, putting us in a holding pattern of emotional flux. We wait the 3 weeks for them to come back, and we play the "What If" game. We wonder which way the numbers will fall. Some times they are up, but in the beginning, for the most part they are down.

We have to find a middle ground to walk on. And stay as objective to the labs as they come back.

The first few years is a real "DRAG!" because for some people, the body takes longer to acclimate to viral infection than others, mine did. It took me a long time to build up a thick skin to be able to take the numbers as they came back, and figured out what i needed to do with myself to maybe spike the numbers on the next round.


If you fall into the pit and get upset and do the "I am Defeated" ritual you will only hurt yourself mentally and emotionally. So learn this lesson now, so that you know that the PIT is there, and falling into it, will be your own doing.

I know that numbers are upsetting, and can really bring us down, I have walked this road for 11 years, I know what must be running through your head. What happened? How could those numbers be like they are? every body is different. Each body is unique and immune systems are fickle. The littlest "Trigger" can set off an immune response. THIS Happens.

Sorry to say, but the only way to explain it is this way...Get Used To It.

How you let things affect you will be the determiner of success or failure.

FAILURE and GIVING UP is NOT an Option...

Pigging out on comfort food every time negative numbers comes back, WILL, in the long run,
BE A BAD outcome. DON'T DO THAT!! Being self destructive in the face of fighting your immune system will only prove to be a FUTILE effort. Everything YOU do to your BODY HAS circumstances, and sometimes they can become LONG TERM problems you don't need.

BEING GOOD to your body and listening to it is NECESSARY!

If you don't this fight will take you down, and even the most seasoned HIV longtimers can be knocked off their pedistles. I have had the last 7 months of Hell.. with my results starting to fall, and my doc deciding after 4 good years to change my medication all together, which almost killed me, I got to the point where I started thinking about DYING!! I fell into a pit I had not seen in a long time, only to return to the old regimen and I brought my numbers back up.

THIS - HIV - AIDS - is a mental battle, if the disease does not kill you - your mental and emotional battle WILL. Learning how to navigate the pits, valleys, highs and lows is important. You are not the first and you surely won't be the last. You are not alone, keep your chin up and know that you are loved.

Everything is 90% MENTAL and 10% MEDICAL....

Listen to your body, start "tweaking" your diet, sleep times, WORK loads, emotional and physical stresses. THINK about medication, and start thinking about what you should do. This IS YOUR ballgame. Starting MEDS IS a HUGE decision, which will bring with it LOTS of questions and feelings.

Starting medication brings with it the VERY REAL REALITY and slaps you in the face, as you stand in front of the medicine cabinet and count out your first dose!! What a fucking bitch that is. It Fucking SUCKS!! But enventually you will have to face this reality, so I guess there is no better time than the present to enlighten you. I'd rather give you what you need and what to expect now and enlighten you before this comes up in reality, at least you have it to think about it.

The hardest period for me was the first 5 years, because I was sick as a dog. I was trying drug cocktail after drug cocktail, there was not pheno/geno type tests until 98. So look at this, most of the early diagnoses had more problems than you will have now, at least you can have tests done that will save you ware and tare, mentally, emotionally and physically!

Keeping a level head IS important.

YES we should TRY NOT TO let the numbers affect us, i learned this over the last 11 years, HOW MUCH you let numbers affect you IS the KEY to survival. Negative numbers and Low numbers are a bitch, because you feel like you worked so hard and did your best and the numbers come back and you find that they are LOW AGAIN! Fuck, can't i cut a break man, what the fuck do I have to do to get some good numbers? Well, I've asked god that question many times.

It was a journey - something I had to find the path on, it was a mental journey.

Allright, I know the numbers may be all over the place for a while, so i better be prepared for this, allright, take the numbers in stride, be calm, be RATIONAL, NOT irrational. Listen to your doctor, MAKE your OWN decisions for you. This is your life and your medical program, in the end YOU call the shotss as to what you want for your body, with your doctor acting as middle man between the virus and the administration of medications and monitoring.

Walk, and keep walking, keep a level head.

DON'T fall into the PIT of despair and DEFEAT!!

DEFEAT and SUBMISSION is NOT an option, DO you hear me!

HIV will NOT defeat me. I will prevail ! It may take me a while. but I know eventually I will reach the median and the numbers will PLATEAU... then steady then rise and fall like the tides. Your emotional state at the time of your lab draw will be key to the results of your labs, and I gave you that info already.

These little pitfalls WILL happen. So now you know they will come up when you least expect it and you will do your best and follow the plan and walk the journey with all the advice we give you and still the numbers come back low, ( SO what the hell am I telling you ) and should you beleive me? that's your decision. HIV is a nasty bitch and takes mercilessly.

You have to believe me that eventually they numbers will flatten out, and you will begin to see a trend. Based on medical data and your emotional and physical status of your body. This pattern will only become evident after at least a years time, I still don;t know if you are on meds or not, and whether or not you will start them either, WHEN you start meds...The real Medical roller coaster will begin its run.

So Prior planning prevents piss poor performance!!!
(goodness I am quoting my father !!) EEEEK !!

I hope this little mental discussion has helped you.

Know you are loved and that you're not alone.


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