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Part X: Med Changes and Hope
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 03-06-2013

Autumn Preusser “I’m a 31-year-old transsexual woman living in rural Arkansas with my boyfriend of five years. I enjoy dancing and music, and I really like photography. I am disabled and on SSI (Supplemental Security Income). Right now I’m just learning to live with HIV.”

A T-House Monthly Blog-Series

On Dec. 10, 2010, Autumn Preusser found out she was HIV positive. Almost immediately, she began channeling her feelings of confusion, frustration and loneliness into a blog she created on Blogspot. The result is reposted here in its entirety. It’s an honest, detailed chronicle of an experience all HIV-positive people share, and each person goes through in her or his own way: the first few months of learning to live with HIV.

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell I started the Norvir (ritonavir), Reyataz (atazanavir) and Truvada (tenofovir/FTC) combo on March 2nd. I stayed on that combo for a month. The side effects, mostly fatigue and nausea, were a constant. I’m sure the Bactrim (co-trimoxazole) and Zithromax (azithromycin) didn’t help. Emotionally it got to be kind of hard … the first week wasn’t too bad but after that with the constant nausea and fatigue, I started feeling pretty low. The toll it was taking on me made me have all sorts of feelings. I began wondering what I was doing. At that point I felt better before I started the meds than I did while on them. I just assumed that it was something that I was just going to have to get used to.

I had another doctor appointment on March 30th where I got more labs drawn, and we talked about how I was doing on the meds. We talked a lot about the nausea and apparently vomiting 10-20 times a month is not acceptable. We decided to keep taking the Reyataz and Truvada, but without the Norvir. Since the Reyataz was no longer boosted we increased the dosage of it up from 300mg to 400mg.

So far so good on this combo. Hopefully they will do their job and my counts will reflect that.

It was at my last doctor appointment when we started talking about how I was feeling that my doctor assured me that being on meds didn’t have to be that way. I could be on meds and feel good, we just had to find the right combo. I was so relieved when I realized I didn’t have to feel bad to combat HIV. It was so relieving to know that the Doc would work with me and I wasn’t alone in this.

I think I am still trying to accept HIV as a part of my life now. I’m still pretty new to life with HIV and right now it’s the biggest part of it, I think it will continue to be for some time to come. I’m OK with that.

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Part IX: Starting Meds!
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 01-05-2013

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell, as of 3/2/11 I started meds for HIV.

Actually it started out kind of iffy. I called the doctor’s office to see what time my appointment was and, lo and behold, they hadn’t written my appointment down. They worked something out and squeezed me in at 10:30.

I went back with the doctor for my appointment. I knew we were planning on discussing what meds to go on and all of that.

I was hoping for Atripla (efaviernz/tenofovir/FTC) but knowing my past medical history and mood disorder, I knew that would be an unlikely choice.

We talked about my options and decided on Norvir (ritonavir), Reyataz (atazanavir) and Truvada (tenofovir/FTC). It was at this point that I found out the test I had to wait for pre-approval from Medicaid for was actually the genotype test. The doc wanted me on meds anyways and said that if it turned out that there was resistance to the meds we could switch them later.

The doctor also wanted me on three times weekly Bactrim DS (co-trimoxazole), and 1200mg azithromycin (Zithromax) a week as prophylaxis. After I got home I kind of found this odd since most people don’t start this until their CD4 is below 200. I’m not a doctor though, so I’m sure he knows what he is doing.

Before I left the office, I was told that the genotype test had been pre-approved and I needed to go visit the lab. Turns out it takes three vials of blood for this one test. Didn’t help that the technician’s hands were shaking. Ended up bruising me worse that time than it did the time before when they took 13 vials of blood.

Well, the doc asked me where I wanted my prescriptions sent to and out of habit I gave him the name of my local pharmacy. He advised me that it might not be a bad idea to have them called in to a different place outside of my home town so as to protect my privacy better. We opted to have them called in to the closest Walmart pharmacy, which is over an hour from where the doctor’s office is, but only about 20 minutes or so from our home. Well, we got to the pharmacy and found out that they never received the prescriptions. We called the doctor’s office and they assured us they had

sent them and were sure they had sent them to the right pharmacy. After many calls on our behalf and the pharmacy’s, the prescriptions were finally filled and we got to leave Walmart three hours later.

We got home and of course I researched the meds to death. LOL.

My only dilemma was when to take it, morning or night. After much deliberation I decided to take it that night. Now I’m wishing I had taken it in the morning.

So far the side effects haven’t been horrible; the first day or so came with a lot of fatigue and nausea.

Around the second or third day, I’m not sure which, the nausea got to be a bit much and I decided to take a Phenergan (promethazine) in the afternoon. WELL, that was a mistake, lol. An hour or two later, I felt like I had taken a ton of sleeping pills or something. Knocked me right out! I did ask the doctor if I could take Phenergan with these meds and he OK’d it. I guess things just affect people differently. Now I know only to take it when the nausea is really bad and I want a REALLY long nap, lol.

Now, seven days later the side effects are very mild and I’m handling the meds really well. The days I take the Bactrim and azythromycin along with the HIV meds are the worst but still not too bad.

Mentally … that’s a different story. Up to this point, I have been handling things very well, keeping upbeat and positive.

Taking meds sort of took the wind out of my sails a bit. The idea of having to take meds for the rest of my life was and is kind of sobering. I deal with the thought better each time I take them though.

Well, that was my long drawn out story of starting meds, lol.

Thanks for reading,

Autumn

Part VIII: Doctor Appointment and Lab Results
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 01-02-2013

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell, I had my doctor appointment with the infectious disease specialist.

I loved the whole team. They were great. Very caring and sympathetic. I had a ton of blood drawn, over 13 vials worth. They tested for everything under the sun. I ended up having to wait quite a while to get my results back. Several weeks actually. The results were good though:

• My CD4 count is 456
• My viral load is 2,077
• I’m not resistant to any meds
• My white count is high I’m vitamin D deficient
• The hepatitis C and A tests were negative
• I’m immune to hep B

My doctor does want to start me on meds. I’m not sure how I feel about that, but I’m going to move forward and do what they say. Overall, my counts and everything are A LOT better than I thought they would be. I’m very thankful for that. My next appointment with him is March 2nd. I guess we will start the meds then.

I’ll add more soon,

Autumn

Part VII: Rescheduled HIV Doc Appointment
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 01-02-2013

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell, my first doctor appointment was rescheduled.

The doc apparently had a death in the family.
My heart goes out to him.

I’m learning that all of this is going to be a huge waiting game. I hate waiting.

I’ve been sick for two or more weeks. Cough, sinus headaches, fevers, chills. Been through two rounds of antibiotics and lots of steroids.

This round of meds may do it, though I’m starting to feel a little better.

I’m ready to know my CD4 count and viral load; at least then I will know what I’m working with and what I need to do.

I really won’t know anything until this appointment with Dr. Abraham. It is for the 26th of January, this coming Wednesday.

I really don’t know what to expect for this first appointment, what they will do or anything. I hate being in the dark.

Well, it’s only a few more days to go, then we will know.

I’ll keep y’all posted.

Lotsa Love,
Autumn

Part VI: Glimmer of Hope
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 01-02-2013

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

t’s been a while since I’ve posted anything. So, I figured it was time.

Things have been up and down lately. I retested for HIV and of course it came back positive. I guess I was kind of hoping that there may have been a mistake.

I guess that kind of made me lose a lot of hope for a while. Things felt sort of “final.”

I have HIV, I’ll never be rid of it. I guess right now I’m working on accepting that. It’s not easy and some days I want to scream and cry but, I’m moving forward.

That’s what it’s all about now. Moving forward. It’s easier said than done. Some days I just want to lay down and die, but I can’t. I push and scrape along but I do it.

I’m still scared. I don’t want to get sick. I don’t want to die. BUT I also realize that everyone gets sick and everyone eventually dies. It’s no different for me than it is for anyone else.

I started chatting in a chat room on Yahoo! HIV/AIDS. The people there are nice. It’s nice to talk to people like me, people who act just like everyone else in the world. It’s nice to know that life goes on and things can be normal. Life is what you make of it.

It’s only seven more days until my appointment with the HIV specialist. I’m nervous but ready to see him. Being well informed is half of the battle.

I am STILL waiting on the packet they are supposed to send me. I don’t know what the deal with that is. I’m going to call them later today to find out.

That’s really all I have now. I’ll update more later.

Autumn

Part V: Rough Beginnings for the New Year
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 03-01-2013

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell, it’s New Years Eve and things are pretty rough.

I’ve been trying to remain optimistic about things but today has just been one of those days.

It started off OK, like most days do. Then I just keep feeling like there is something I should DO. Of course, there isn’t really anything I can do right now that I’m not already doing.

My stress levels lately have been at an all time high. Panic attacks are more frequent and seem more severe. When I go out I feel like people just know that I have HIV. I know they can’t. It just feels that way.

I bounce around from anxious, to angry, to exhausted constantly.

I put up a good front around my family. I’m the caregiver, the support or “rock” for our family. Especially my mom, so it wouldn’t do to show weakness in front of everyone.

I’ve been trying to do the right thing lately. I started on a vitamin regimen. Been looking into an exercise program too. It just doesn’t seem like enough. I’ve read where people start taking control of their lives and start putting themselves first. I have no idea how to do that.

I have a few goals I think will help me in the coming year:

Take my meds on time and don’t miss doses. Not HIV meds, but meds for other things; haven’t started those yet.
Eat a more well-balanced diet.
Start a good exercise program and stick with it.
Continue with therapy.

That all seems pretty do-able. I don’t see why it shouldn’t be at least.

My boyfriend and I have a few projects we’re planning on working on this year and I’m actually looking forward to them.

We’re actually putting in a new breaker box and replacing the old “fuse” box. YAY! We’re gonna run quite a few new electrical outlets too.

We started building a shed this summer and I’m looking forward to seeing it finished.

I keep telling myself that if I focus on all the things that are good in my life that this one part, HIV, won’t seem quite as unbearable.

I want to live a normal life, and maybe — just maybe — I’m beginning to realize that I can still have that, even with HIV. I’ve went through A LOT in my life. It’s never been easy.

I’ve dealt with adversity since I was old enough to know what it was. I guess I just have to look at this as another hurdle, something that I CAN overcome.

I want this new year to mean something to me. I want it to truly be a new beginning.

More soon,

Autumn

Part IV: Merry Christmas Everyone
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 03-12-2012

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell it’s Christmas morning! I’m doing my best this morning to
try and have a happy and productive day.

I plan on spending the day with my family. Mom, dad, brother and niece.

I have had a hard time being around all of them lately. I have always been the strong one. The one that is there for everyone else when things get tough. So, lately, even though they all know of my recent change in status from negative to positive, I’ve been sort of just pretending that everything is OK. I hadn’t realized how much this was effecting me until yesterday. It’s hard being everyone else’s rock when you are falling apart inside.

I haven’t really taken the time for myself to just grieve. This has been so very hard for me. My whole life is different now and I don’t really know what to do with myself. I don’t know how I really fit in to our family dynamic anymore. On one hand, I don’t want them to treat me any differently; on the other, I don’t want them to just pretend that everything is OK either. Maybe a happy medium would be nice.

With everyone basically sticking their head in the sand over this, I feel so alone. I’m the only one dealing with it and I’m not doing the best job of actually dealing with it. Thank god for therapy, I wish I got to go more often.

My BF had to work today, and after work he is going to stop by his parents’ house. Probably won’t see him until 8:30 or 9 tonight. Sucks, but the holiday pay will be nice for him. Thank god for him. If it weren’t for him, I don’t think I could go through this.

Maybe after today, the holidays, I’ll be able to take a break and get my head around what is going on in my life.

That’s it for now,
Autumn

Part III: Feeling Sorry for Myself
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 30-10-2012

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

his morning started off normally. I kissed the BF goodbye, and talked to him on the phone while he was on the way to work. But when we hung up, I started feeling horrible.

I’m so nervous and anxious. I don’t really know what to do with myself now.

The last week or so has been horrible. I’m either extremely anxious and nervous or totally wiped out and exhausted. I don’t think any of it has anything to do with being “sick.” I think it’s just the stress of the whole situation taking its toll on my body.

I don’t want to deal with this anymore. It isn’t fair. I just want my life to go back to normal.

I don’t really know what to do. I’m lost, confused and afraid!!! I feel like I’m just going to wake up and all of this will have just been a horrible nightmare.

I feel so desperately alone in all of this. I’m not saying I don’t have support and people who love me, because I do. I just feel like they don’t have a clue what I’m going through. Hell, I don’t even have a clue what’s going on. I just feel like this HIV thing has isolated me and put me just out of reach of everyone else. If that makes any sense. I just don’t feel like I belong anymore. I don’t feel like I’m a part of anything anymore.

Just feeling lonely,
Autumn

Part II: Boyfriend Tested Negative
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 01-10-2012

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

If you’ve missed Autumn’s story from the beginning, click here

ell, my boyfriend got his test results today. He tested negative. I was shocked. We both expected him to be positive. He and I have been together for five years. We have been having unprotected sex for the majority of that time.

We, or should I say I, thought that he was the person who brought this home. Now I feel horrible. I mean, he DID cheat. But he isn’t the reason for this.

I stand by everything I have said. I haven’t cheated, done drugs or anything else that could have put me at risk in the time he and I have been together.

That would put me at getting HIV either five years ago, or from a dentist or surgeon. We just don’t know. I guess we never will.

I prayed for him to be negative. I hoped against all odds that he would be negative. I got my wish!

BUT, now I’m terrified. We had both accepted the fact that we both had it since I had tested positive.

I guess I felt better knowing I wouldn’t go through this alone. Now though, I feel more alone than ever. I know how selfish that must sound. I don’t mean for it to be. I would never wish this on him.

The nurse at the testing center said that it was very rare for this to happen. We have both decided to be tested again.

Me on Tuesday and him four weeks from now.

I am so confused. I don’t really know what to think.

Could I actually be negative? Could he really be positive?

We don’t know for sure.

I guess you never know anything for sure.

The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Posted by Jodi Reichman ( Ihme), T-HOUSE Coordinator | Posted on 18-09-2012

Category : HIV / AIDS

A T-House Monthly Blog-Series

On 12/10/10 I tested positive for HIV.

A little back story first.

y name is Autumn. I am a transgender woman living in rural Arkansas. I’m NOT, nor have I ever been a sex worker, escort or anything of the sort.

I don’t use IV drugs and I’m not promiscuous. Just the recipient of a shit storm of bad luck.

I have given up trying to find out how I became positive. At this point it doesn’t really matter.

My boyfriend, who shall remain nameless, gets his test results tomorrow.

The day of the 10th was like no other day in my entire life.

I got a call from the nurse who gave me the blood test asking me to come in to get the results. I found that sort of odd because when I was there having the tests done they told me that no news was good news and if they didn’t call it probably wouldn’t be anything to worry about. That was the first red flag.

I decided to have my mom go with me. We were both worried due to the odd way things were handled. Well, my appointment was at 9 a.m. so we got there 15 minutes early, just to be punctual. We sat there and waited 45 — yes 45 — minutes before they finally called me back. When we got to the back the nurse practitioner ushered us into a room with a strange man I had never met. He introduced himself as a disease-intervention specialist. It was at that point that my heart dropped to the bottom of my stomach.

I knew something was wrong with one of the tests. At this point I still hadn’t considered it might be HIV. They had given me the regular STD work-up so I was expecting something, but definitely not what came next. He told me about all of my results, reading off each one and telling me they were negative.

I started to kind of chuckle to myself thinking I had been worried for nothing and he must speak with all the patients who get STD tests. It was then that he came to my HIV results. He stared at me matter-of-factly and blurted out that I tested positive for HIV. I felt like in those few words that he ended my life.

My mother and I both broke down in sobs. My worst fears had come true. I can’t even begin to describe the magnitude of emotions I was feeling, so I’m not even going to try.

The man spoke to us a little more about the test itself, about the need to see a doctor soon and the like. He gave me a referral to an HIV specialist “near” my area. I promised to make an appointment with him and left the office.

I was lucky to have my mother there. I’m lucky to have such a caring boyfriend. My boyfriend came home from work and we all sat and talked about it. I’m so grateful for that. I think had I gone through it alone, I wouldn’t have been able to cope.

Three days after testing positive I made an appointment with the HIV specialist.

They took a lot of information over the phone and gave me an appointment for January 19th. I was SHOCKED! A whole month before I would know anything.

That’s what I’ve been doing since last Monday, waiting for the packet they’re supposed to send and praying that I make it through all of this OK.

Part II

Part X: Med Changes and Hope
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part IX: Starting Meds!
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part VIII: Doctor Appointment and Lab Results
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part VII: Rescheduled HIV Doc Appointment
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part VI: Glimmer of Hope
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part V: Rough Beginnings for the New Year
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part IV: Merry Christmas Everyone
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part III: Feeling Sorry for Myself
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

Part II: Boyfriend Tested Negative
The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

The First Few Months: A Transgender Woman Faces an HIV Diagnosis in the Rural U.S.

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