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Monday, December 1, 2008

My diagnosis, my day, my life.

As it was coming closer to Dec 16, I kept trying to make excuses as to why we shouldn't go and get tested. We really couldn't afford it (for some damn reason they were charging an arm and a leg!) but hubby just really had a strong feeling that it was time to get all of our tests done. We had to take the bus down there, we just went to Planned Parenthood because that's where I was getting my birth control so we just made the appt. When we went in they were backed up, I was cranky because for some reason I just really didn't want to be there.....They had just gotten a new computer system, and none of them knew how to use it. Go figure! Finally after waiting there for over an hour they took hubby back and ran all the STD tests on him.

*Informational Sidebar* In some places HIV tests are done almost like a pregnancy test, in that you get results in 20 mins. They just take a finger prick of blood and put it on a test strip and it tells if your positive or not. If you come up positive on that test then by law they have to take a full blood sample and send it off to a lab to double check it. And that's the test we got done.

So when they were finally done with hubby they took me back and ran all those lovely tests. Then they made us wait.........I couldn't understand what was taking so very long. I was getting more and more anxious and I just had a feeling in my gut that something was wrong. Finally they took hubby back to give him his results......as I was sitting there waiting, one of the nurses said to the other "She's got it...what do we do?" when I looked up at them they were very sheepish....yes indeed that's how I got to find out! When they didn't bring hubby back out, I knew it was true....because he had to go back and get his full blood draw, so when the Dr came to get me I knew.......she was new at this job, and it turns out it took so long because she didn't know what to do or how to say it, so she had to call someone else and take down notes! How very heart felt. But she was sincere, she almost started crying. I was just in shock, at the time it was like it didn't even matter, I didn't care. (oooooo I would later!) So they took me back to draw my blood, hubby was done and I knew he was in the lobby........waiting.. I didn't want to face him......I was sooo scared to see him.....the lobby was completely full of women waiting for their birth control, I mean standing room only. And poor hubby is sitting there all by himself crying. When he saw me come out he burst into tears all the harder and rushed up to me........"I'm sorry honey I'm sooo sooo sorry" I just wanted to get out of there, I didn't want all those other girls staring at us like that. We had to wait for a taxi to come and pick us up, and we didn't have any medical insurance.
We got tested on Dec 16th, but because of Christmas we couldn't get in to see an HIV doctor until after we got on state insurance and then the long long long wait. We finally got in to see the doctor at the end of February! My god I don't think I will ever forget December 16th 2004
Those first couple of months were hell. If you search the Internet you find lots of very old information that can really really scare you. How do you know its not current?! Most articles don't always have a date attached. We received some counseling and the woman I was seeing told me...and I will never forget this...she assured me that catching it as early as we did in me..It would be 10 years, maybe more before I needed meds!!
She could not have been more wrong. I needed meds two years (aprox.) after being diagnosed. My numbers just kept declining until finally I wasn't able to fight off even the easy stuff. Small colds were a big deal in our house. I can remember my first night of taking meds. I am on three different medicines that we call the "cocktail" sure I only take a small handful and that's much better than it used to be...but its still four pills that I have to take everyday for the rest of my life. That night started it all. One Truvada, one Norvir and two Lexiva. Pete had been on this same cocktail for years already. He tried to offer words of wisdom...letting me know it was ok, that they aren't so bad...yea. Hard to believe at the time. I stared at them in my hand for far too long...finally, down the hatch. It took me about a month of living on the couch and sleeping alot before I was acclimatized to the pills. Every night. Same time. Same pills. Sure its not "so bad" but they feel like shackles quite often. Tying me down. Take them or die. Simple right? Sucks.
The poster's for the pills show happy people riding bikes, taking hikes with words like "just once a day!" I hate those posters. This is not easy. Yes its just once a day. Yes it used to have been worse...much worse! Five times a day, upwards of 25 pills a day....yes, that was worse. There is no doubt that was worse than what I deal with today....but I wasn't there. That wasn't my experience. This is.
My feet tingle now. Starting signs of nueorpathy. My dear sweet husband already has a more advanced version of this. It will crawl up our legs....progressing. I try not to dwell on it.
Then I see on the news that our government thinks abstinence only education works!! Others...headed for my fate. Please Gods no....let the world wake up from the AIDS inflicted nightmare.
Today I got my latest lab results. Every three months, same dance. Viles upon viles of blood taken....we joke that our blood must be particularly tasty to the vampires. A delicacy maybe. Yes. That's why they take so much blood! Today both hubby's tcells and mine are as high as they've ever been. Our meds are working and working well. Our viral load is undetectable still. Most likely there will come a time when our meds won't work anymore....and then we have to start all over again with a new cocktail. The couch will still be there for me. Now if only we can find that cure....what a wonderful day that will be.

Some links to some articles *I've* written on the topic of HIV. (in the entry below this there are links to articles I *didn't* write that are great to check out as well.)
How HIV has changed my life
My feelings about my disease
What to do when a loved one tells you they have HIV

2 comments:

Brenda said...

Thanks for sharing your personal story and feelings. ((((((hugs)))))I will pray you stay in remission (is that even the right word?) for many many many years to come.

Unknown said...

You are TRULY a brave woman. May God continue to bless and protect you.