Why Support is Crucial
The worry that I feel about being off of my meds is mounting. Every day I feel a cough or congestion or a swollen lymph node and I can't help but imagine the worse. I can not help but to imaging the HIV growing and multiplying inside of me exponentially. Understanding the growth rate of HIV, that it multiplies so quickly, makes me feel overwhelmed.
Getting back on my meds is starting to feel like an impossible dream. Trying to convince so many different entities to cooperate and talk to each other is becoming prohibitively exhausting. I got approved for Ryan White. I called my pharmacy insurance company to give them my Ryan White information. The representative at Accredo (the specialty pharmacy that my insurance, Anthem BCBS, requires that I obtain my HIV meds) had no clue what I was talking about when I tried to explain Ryan White to her. She did take down all of my information and is having my insurance information verified. Great...just a few more days until they are able to send me my meds.
But then, I got my letter from Ryan White and they have me assigned to another pharmacy, one I have not used in a couple of years. I have not yet called Ryan White to ask about it. I want to see how it all turns out with Accredo; the rep told me I should hear something from them tomorrow, Tuesday.
It almost feels like anything that can go wrong is going wrong. Even as I write this I am so congested that when I cough tears come out and I get dizzy and then nauseated. I know it is probably just allergies, but the base part of me worries. I am a year and a half behind on my pneumonia vaccination. I tried to get it at my last doctor's appointment but because I had not met my $2500 deductible, it was going to cost $200, which I did not have.
It is pathetic that in 2014 in the United States one has to choose between food or rent or bill or medical care. The healthcare system in the US is a joke, it is a mess.
I keep thinking that the pieces of the puzzle will all fall together soon. However, weeks are turning into months and I am starting to feel lost in all the red tape. Dealing with red tape of any kind is frustrating but dealing with red tape from Ryan White (waiting until the next available appointment), my insurance (haveing to magically have $2500 on hand), the pharmacy ("You are just a number and we will get to you when we get to you, and not a moment sooner!") is just torture and unnecessary in the modern world. And on top of that I have to get up every day, put on a smile, pretend to be optimistic, and somehow remain productive at work. Then I come home to a partner who has never, ever understood the impact of HIV on me, who believes I should just suck it up and get over it.
What is so ironic is that I was talking to one of my coworkers today and she asked me why I applied for FMLA. FMLA stands for the Family Medical Leave Act, which guarantees 12 weeks of unpaid leave to anyone who needs to take off from work due to a medical need. I applied for intermittent FMLA and was approved...but for only 3 days for the year. I still need to call the FMLA people to ask about that. Yet another layer of red tape in trying to find some relief from this relentless disease. Yet another thing to do on my to-do list.
Anyway, I tell this coworker that I have HIV and am off my meds and have been off of them for a couple of months. She looked surprised and said "But, you are always so upbeat and positive and happy! Does it not worry you being off your meds?" Apparently I am a good actor or at least I am good at putting on a happy face. It gave me a boost though...I guess if you fake it then eventually maybe I can start to feel more optimistic.
Never discount the kind words and support you give someone with HIV. Sometimes it is the boost one needs to keep going even when you feel like giving up.
Getting back on my meds is starting to feel like an impossible dream. Trying to convince so many different entities to cooperate and talk to each other is becoming prohibitively exhausting. I got approved for Ryan White. I called my pharmacy insurance company to give them my Ryan White information. The representative at Accredo (the specialty pharmacy that my insurance, Anthem BCBS, requires that I obtain my HIV meds) had no clue what I was talking about when I tried to explain Ryan White to her. She did take down all of my information and is having my insurance information verified. Great...just a few more days until they are able to send me my meds.
But then, I got my letter from Ryan White and they have me assigned to another pharmacy, one I have not used in a couple of years. I have not yet called Ryan White to ask about it. I want to see how it all turns out with Accredo; the rep told me I should hear something from them tomorrow, Tuesday.
It almost feels like anything that can go wrong is going wrong. Even as I write this I am so congested that when I cough tears come out and I get dizzy and then nauseated. I know it is probably just allergies, but the base part of me worries. I am a year and a half behind on my pneumonia vaccination. I tried to get it at my last doctor's appointment but because I had not met my $2500 deductible, it was going to cost $200, which I did not have.
It is pathetic that in 2014 in the United States one has to choose between food or rent or bill or medical care. The healthcare system in the US is a joke, it is a mess.
I keep thinking that the pieces of the puzzle will all fall together soon. However, weeks are turning into months and I am starting to feel lost in all the red tape. Dealing with red tape of any kind is frustrating but dealing with red tape from Ryan White (waiting until the next available appointment), my insurance (haveing to magically have $2500 on hand), the pharmacy ("You are just a number and we will get to you when we get to you, and not a moment sooner!") is just torture and unnecessary in the modern world. And on top of that I have to get up every day, put on a smile, pretend to be optimistic, and somehow remain productive at work. Then I come home to a partner who has never, ever understood the impact of HIV on me, who believes I should just suck it up and get over it.
What is so ironic is that I was talking to one of my coworkers today and she asked me why I applied for FMLA. FMLA stands for the Family Medical Leave Act, which guarantees 12 weeks of unpaid leave to anyone who needs to take off from work due to a medical need. I applied for intermittent FMLA and was approved...but for only 3 days for the year. I still need to call the FMLA people to ask about that. Yet another layer of red tape in trying to find some relief from this relentless disease. Yet another thing to do on my to-do list.
Anyway, I tell this coworker that I have HIV and am off my meds and have been off of them for a couple of months. She looked surprised and said "But, you are always so upbeat and positive and happy! Does it not worry you being off your meds?" Apparently I am a good actor or at least I am good at putting on a happy face. It gave me a boost though...I guess if you fake it then eventually maybe I can start to feel more optimistic.
Never discount the kind words and support you give someone with HIV. Sometimes it is the boost one needs to keep going even when you feel like giving up.
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