Lisa's POZ Blog

I have wanted to come here over the last couple or so weeks for so many reasons
This is probably going to be difficult to read, as I have been a bit off lately. I am not able to think about form, substance, etc....as.......... My brain has apparently scrambled, in a moment of time.

As I sit here this evening, I am having to work really hard to stay focused on this task.
I have related the story about my ill fated drug interruption. I will reiterate the salient facts.
I had a singular moment of my disease history, that would allow me the postulated chance of a gamble to stop taking these meds.

I'll be honest with you. I was really hoping to lose some of this truncal weight. I don't have a spare tire,........I have something more befitting a tractor pull event.
If they stood up all pretty-n-all, I'd be positively tickled to have the bra size that I do, but that is not the case here.
Frankly, they make me terribly uncomfortable.

I took my last dose of Viramune, on Nov.30.
I became incredibly ill in the first weekend in Dec. a temp of 103F. Suffice it to say, that I remained ill until the second week of Jan.'06' I called my ID clinic,( Dec 8th) and was reassured that it just had to be the flu.
I really believed that it was a severe viral rebound, but was poo-poohed by the clinic. No appointment was made.
Saw Rachel for my routine visit on Jan. 14, and sternly admonished me for having come off the meds, without the call I was supposed to make to her in consultation, before embarking on the STI.(StructuredTreatmentInterruption)
Long story short, I went off half cocked, and stopped without the knowledge that my numbers had fallen right back to their original. unwavering, CD4 500-600, VL undetectable.
{ I must interject here, that my lab values have consistently been the same, for 4+ years)

On tuesday morning I had a routine visit with Rachel. I was finally able to find out what amount of raping, and pillaging had been done to my system for the six week duration of my "break".
January's lab values were a little worse than I had anticipated......(to say the least)
CD4 dropped to 400, and I had already managed to replicate 72,000 copies of VL./whatever standard expression.

I've been back on my usual meds since the January visit, and will learn of the results on Monday, or Tuesday.(Trizivir/Viramune)
I remember the accident on Jan.4rth, and my visit with Rachel on the 14th, but have only vague remembrances of January, other than Serenity's birthday, and mine on the 12th. I couldn't tell you what I did, or not.
My dining room table is rebundant with official things I should be tending to, but I have had the attention span of a gnat since the first of the year. I have piled them in interesting loose bundles on the table, in order to be able to continually view them at a glance, so I don't miss something I should do.

I have been reading, and "lurking" in the forums over the last few weeks, and have felt absolutely deficient in any capacity to contribute. Even as I have been greatly moved by many threads.
My thoughts have been hurky-jerky, and I could never dare to sound off balance, to some of our newer members, I could see that it might be frightening to some.

I had a whole list of things I wanted to express with this jubilant opportunity that I was granted by our benevolent benefactors Tim,Peter,Andy,Howard,and our beloved Annn.
I am very slowly regaining my cognitive, and theoretical thought processes, so I ask you to bear with me for a period of time.

My brain is not firing on all cylinders of late, but I do have so many things I want to share with you.
Hang with me, It'll come in time.

.....or there about, I was a single working mom with three children entering kindergarten.

I had been divorced for two years from a man who had brutally beaten me on an almost daily basis for nearly five years. Despite the divorce, I was looking over my shoulder constantly, and still carry residual baggage from that time.

I was working at a long term care facility, as charge nurse. I met a man(Barney) who I thought was interesting, educated, witty, and charming. I allowed him to move into my home after 3, or 4 months, and we embarked on what I thought was a monogamous relationship.

We lived together for nearly a year, and it was only after he was gone, that the full impact of the damage done was realized by me. He was boisterous, very social, and flirty.
What I didn't know until too late, was that he had been seeing boys on the side, and to top it all off, he had been terrorrizing my children.

Not long after he left my home, I received a phone call from a man who identified himself as a doctor,and he was asking me to come to the hospital room # _ _ _ _.
When I arrived at the hospital, the physician identified himself, and apologized for sounding so serious on the phone. He went on to tell me that he was treating a patient who had news to tell me. He ushered me into the hospital room, and low, there was ol' Barney. Barney was being forced to tell me that he was HIV positive, and that he had also likely passed Herpes to me too. He tearfully confessed to all of the side affairs, and how sorry he was that he had never made any attempt to be truthful with me from the start. He had known about his HIV before we ever started our relationship, and had never balked at the discussion we had about discontinuing the use of prophylactics during our relationship.

I knew about HIV, I had done some reading, even if it wasn't applicable to my current work situation, I have always tried to keep abreast of medical news. Looking back now, I still kind of amaze myself at how well I took this news.

So there I was. Twenty eight years old, with three 5 yr. olds, and a home to maintain. There wasn't a whole lot known yet about either of these afflictions, and I felt just fine.

I chose to do some reading, pray for the best, and hurry get busy to ensure my children's unknown future. I threw myself into my work. As I look back now, I am able to define when I went through seroconversion, even if I didn't know what it was at the time. It really is true what they say about hindsight. 20/20.

When the kids all got chickenpox, I got a case of shingles. I have had periodic outbreaks from Herpes, but never anything too horrible. I will say one thing about it though........ You have no idea how hard it is to maintain your professional composure on the job, while you are terribly distracted by the overwhelming urge to get to a bathroom in order to scratch the endless itchy that comes with a genital outbreak. WHEW!!!! I remember taking alcohol pads to the bathroom with me, and rubbing the damn thing raw, just to keep it from itching so bad. Burning puddy anyone? ........The lesser of two evils, I suppose.

I rarely have outbreaks these days, as I have learned to try and not get too emotionally bent out of shape. That was always a major trigger for me. I went through a special kind of hell while my kids were in their teens..........and I still intend to make them pay.....

Stay tuned.......tomorrow...more of the story.

I know I said you would hear the rest of the HIV story, but I had an experience yesterday that opened my eyes.
As I've said before, I always find myself having to tell the story before the story, to get to my point. So here we go.

In my earlier blog about where my head was at, I tried to convey how mushy my brain was. I was having expressive speech problems, and my thoughts were halting, and probably hard to follow. I've gained a little headway since then, but far from my old self.

When I saw Rachel on March 7th, I was in a terrible state of mind. I couldn't tell whether my brain problems were a direct result of ground lost while on the STI, or from the re-introduction of my meds(Trizivir/Viramune), knowing the stuff that AZT is capable of is wide ranging. We reviewed my drugs (all of them), and having been on antidepressants for many years, she thought we should investigate the possibility of a resurgance of depression. She asked me who had originally prescribed my Trazodone, and Elavil, and at some point Lexapro. It was my medicine doctor Mark.
While I was with her, I asked about where I was able to go, and whom I could see under the Ryan White funding. She was going to have Nakeisha (financial administrator) talk to me, and give me guidance, but I walked out without getting to talk to her, because my brain wasn't working. Rachel wanted me to see Mark, in order for him to evaluate whether my antidepressants should be considered.

I had an appointment scheduled for the 17th, but missed it because I got the time wrong, so I rescheduled it, and finally saw him yesterday. I have seen him once before, and the visit was covered by RW, but yesterday was a fiasco.
I presented myself at the reception window, and my old friend wasn't there any more. The woman checked my information in the computer system, and asked if I had my insurance card with me. I told her I don't have insurance anymore, but the visit was going to be covered by RWCA. "Ryan what?"she said. I replied Ryan White.
She says "I don't know what that is". I replied it is a national fund for people with AIDS. She says "I still don't know what that is, I can't enter that on the computer. Our billing system won't allow funded projects to be listed in the computer......I'll have to call my supervisor." I gave her Nakeisha's name, and explained that she could answer her questions. .......Nope, she didn't want to hear that. A couple of minutes go by, and here comes the supervisor. She sidles up to the receptionist, and asks what the problem is. I again explain, Ryan White. She replies"What's that?" Now I'm becoming a little irritated. So I blurted out " RYAN WHITE, you know, the little boy who died of AIDS! There has been a foundation in his name for years, to help poeple living with HIV/AIDS to access the healthcare they would otherwise be refused!"
"Please call Nakeisha, she can clear this up!" So dumb, and dumber dial Nakeisha, and she is out of the office til Monday.
Just Great! Then dumber gets an idea, and says "lets call ______." So they did. Also out of the office.
Dumber then decided to just write it in across the top of the charge ticket, and it would be sorted out later. She asks me to repeat what this was again. "Ryan White Care Act" I exclaimed (thinking that I may have to write it for them, because they could'nt seem to remember those four simple words. For criminy sake, you can't tell me that I am the ONLY patient they have ever had with HIV, but it was looking like that was the case. I even started to think for a moment that they were going to turn me away. Finally after much adieu, I was given the ticket to sign.

Long story short, I finally got to see Mark. I told him of the fracas in the lobby, and he was very understanding. He said he would have a word, and clear the matter up. I am so thankful that I have had a really great working relationship with him for so many years. We even got to joking, and giggling about the front desk jockeys. I'm sure it will be resolved, and I will have no further problems.
I told him that I had to stop taking the Lexapro, because it was not covered by ADAP, and I couldn't afford the steep price out of pocket. Trust me folks, North Carolina has the worse ADAP program I've ever seen. Only the bare basics are covered. HIV drugs, antibiotics, a few proton pump inhibitors(Prilosec,Prevacid), and Elavil. That IS the entire list, period.
I had also complained that it made me feel all jittery for a couple of hours after taking it. He did want me to be on it, and said he would get his drug rep enough to bring all the free he coud get his hands on. He asked if I had any at home.
The answer, was yes thankfully. One of the best things about having started the med sharing program here at aidsmeds, was that one of our forum members had sent some in a package with HIV drugs. I have availed myself of the supply sent, and will have enough to last until Mark can find me more. He simply suggested that I take it at HS(hour of sleep/bedtime) instead of in the AM, as it is usually taken. Well DUH!!! I told you my head wasn't working too good. Why didn't I think of that? That way the jittery stuff may happen, but the other nite-nite meds would allow me to sleep through it, and I would still reap the benefits of it's use. Last nite, I took it at HS, and have had no ill effects today.

My frustrations with the front desk jockeys still bothers me on one level, because this Family Medicine Dept. is part of a huge University System. Wake Forest University/Baptist Medical Center. One of the top 50 Hospitals for many years now, with a national recognition.

I guess we still have a way to go in terms of recognition, stigma, and awareness........I'll betcha the desk jockeys have a deeper understanding today, than they did yesterday. It's a small step, but a necessary one. Glad I don't have any problem talking loudly, and freely about my virus. If this had been one of our newer, or shy-er members, they would have been mortified to have to re-iterate Ryan White, and what it is, multiple times.

Gracious!

Oh yeah....as an addendum...... I mentioned in my earlier blog that my VL had replicated to 72,000 copies, and CD4 had dropped by a full 250 in the six weeks I had been off meds, from 650, to 400.
In six weeks of being back ON my meds, my VL has dropped to 250, and my CD4 has climbed to 785 with a percentage of 28%(27.6) I'll wager that by next lab draw I will fall back into my old familiar pattern of Undetectable, and CD4 of 500-600.