Day 126

[Day0]

It's been awhile since I posted. With the quarantine a lot has changed. It is now Day 126 since diagnosis. I still think of my hiv milestones in days hence my profile name of Day 0,but thankfully I dont obsess like I used to.

I didnt lose my job, but I was partially furloughed. I lost hours and a lot of pay. I'm very thankful for what I have though. I still have my insurance and without that who knows how long it would have taken to get my medication.

So my medication gets mailed to me. The treatment program I am in had me seeing a psychiatrist monthly. She told me that I no longer need to go each month. I am adjusting well to "my new life". She did encourage me to see her online if I needed to but if not, then I'll see her every 3 to 4 months.

I got my latest labs back and though they were good, I still felt disappointed. It felt silly to me to be upset but I was. My viral went down to 51. My CD4 percent jumped to 9 and my CD4 absolute number jumped to 117. I was upset because I thought I would be undetectable by now. My baseline was above 1 million viral and my cd4 was 6. When I went back for thirty day labs my vl dropped to the 280s so I hoped it would be undetectable.

I still havent told anyone about my status. Every now and then I think I'm going to tell someone then I lose my nerve. It feels like when I was a teenager and was finding the courage to tell people I was gay. At Day 43 I said that I might tell my parents and my siblings but wasn't sure. Today, I know I will but it wont be until I am undetectable. I think it would be easier for them to hear the news that way. I doubt I will tell my friends and I definitely will never disclose at work.

I've gained so much weight which surprisingly I am not upset about. Everything still tastes amazing. I think it was from not being able to eat for so long prior to diagnosis. Plus with only working 20 hours a week and being at home all the time it is so easy to say "I think I'll make cookies today" haha.

I haven't missed a dose since Day 0 but I've come close. I have a pill container on my key chain as a back up that has one dose of Biktarvy. Every week when I refill my day of the week pill box I switch them out so it doesn't get old. Ive had to use the backup twice. I take my Biktarvy and Bactrim at 1230 pm. But I've had days where i just dont think about it so I've taken it as late as 8 pm.

I've cost my insurance so much money with all the labs and medications. My Biktarvy costs over 3000 dollars American for 30 days, but thankfully my insurance covers it all with no copay. What is unfortunate is that though my prescription is for 90 days on both Bactrim and Biktarvy my insurance will only authorize 30 days at a time. So the bureaucracy adds to my stress because they submit the 90 days then insurance refuses. Then two days later it authorizes 30. So my medication is always pending. Thankfully my pharmacist always submits my medication early so I will never experience times where I wont overlap.

My last visit, they did a rather invasive test for cancers called an Anal Pap. I felt humiliated at first but thankfully that came back with mild results so I am not cancerous but it is something that we will continue to monitor.

So all in all I'm doing fine. I am hiv positive at day 126. My body is reacting well to the medications and I've no side effects. I'm very lucky and I'm very grateful for the chance to well live.

Thanks for listening.

[harleymc]

Those pap smears and biopsies are very ouch. I've been through 6 cycles of it now. It's quite an ask to feel dignified during the process. Fortunately the specialist and nurse have wicked senses of humour.

On the other matter you will get to undetectable, but the timing varies from person to person.

Hugs from Australia.

[Jim Allen]

Hiya,

Glad to hear overall you are doing well  .

Regarding treatment, you only recently started and it's resulted in a great reduction in  VL, so don't be disheartened. The VL is nearly suppressed already, give it time  .

Take it easy.

Jim

[Jim Allen]

I still havent told anyone about my status. Every now and then I think I'm going to tell someone then I lose my nerve. It feels like when I was a teenager and was finding the courage to tell people I was gay. At Day 43 I said that I might tell my parents and my siblings but wasn't sure. Today, I know I will but it wont be until I am undetectable. I think it would be easier for them to hear the news that way. I doubt I will tell my friends and I definitely will never disclose at work.

On disclosure, each to their own of course and in your own time.

Now some people gain great support or peace of mind I suppose from telling others but don't feel obliged though, as your friends, family or work have no real need to know. HIV is just another manageable medical condition and, people have plenty of those. 

There is also a POZ Lesson on disclosure with tips etc that includes disclosing to friends & family should you be interested. https://www.poz.com/basics/hiv-basics/disclosure

[SanjeevKashyap]

I appreciate your positivity. Its inspiring.

[Day0]

Those pap smears and biopsies are very ouch. I've been through 6 cycles of it now. It's quite an ask to feel dignified during the process. Fortunately the specialist and nurse have wicked senses of humour.

On the other matter you will get to undetectable, but the timing varies from person to person.

Hugs from Australia.

Thanks. I feel pretty good. And I felt silly about being so embarrassed with the pap but I suppose it is all a part of my life now.

My next set of labs is in July. I'm excited to see that.

[Day0]

Hiya,

Glad to hear overall you are doing well  .

Regarding treatment, you only recently started and it's resulted in a great reduction in  VL, so don't be disheartened. The VL is nearly suppressed already, give it time  .

Take it easy.

Jim

Thanks Jim. My doctor says I'm reacting well and not to focus on the numbers. They will come.

[Day0]

I appreciate your positivity. Its inspiring.

Thank you. I've always been a positive person. My diagnosis really made that difficult but I'm keeping positive

[Jim Allen]

Thanks Jim. My doctor says I'm reacting well and not to focus on the numbers. They will come.

Yeah, the VL will. Just keep taking the meds.