Subscribe to this blog's feed 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.
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.