Undetectable!

As I mentioned the other day, I got a CD4 Count of 675 on my last labs. Now, I have the other result we were waiting for....an UNDETECTABLE viral load! Woohoo! This is such great news, and it is such a relief to reach this landmark. It took me 4.5 months on treatment to do this... starting at the maximum viral load (>10 million) and now ending at the minimum (undetectable or <50)!

* A bit of information about "Undetectable": Having an undetectable viral load means that the level/amount of virus in your blood sample is so low that it falls under the measurable range. This does not mean that you are cured of HIV. Nor does it mean that you have "0" virus in your blood or other fluids. It simply means that your body is in good controlof the virus, and the amount of virus has been significantly reduced. Because you have less of the virus in you, you may not be as infectious as you would be with a higher viral load. However, even with an undetectable viral load, a HIV+ person may still pass the virus to others. The goal of treatment for all HIV+ people is to decrease the viral load and hopefully get it to an undetectable level. Most of the medicines today do a great job of accomplishing this, and most HIV+ people can reach this goal. Once the viral load is undetectable, it also gives your body's immune system a chance to improve, and your CD4 count to go up. *

This is not only good news for my health, but both of these results now put me at the level which Peace Corps has set for any HIV+ volunteer to be considered. Now I need to hold these numbers steady for multiple months to prove that I am in stable health. Peace Corps Medical Office, start counting...

To My Friend

A very brave Peace Corps friend of mine has an appointment to get an HIV test today. I am asking that all of you send your thoughts, prayers, love, and support her way. It is such a scary thing to go do, especially if you know you may have been put at risk. Please pray that she has the strength to go through with it, and that all turns out well. More than anything though, please let her know that there are people who will love and support her no matter what the outcome might be. Take a momemt to respond and send your support her way. Thanks!

Is PC Taking Care of You?

A couple of things have inspired this blog post. One being Director Williams’ question, “Is PC taking care of you?” (During my speaking event, a future volunteer also asked a similar question.) Another being a fellow Medevac’s blog I was just reading, discussing some RPCVs/Medevacs having issues with Peace Corps. So… I figured I might expand a little bit on what I think of Peace Corps and their treatment of me so far… hope not to offend anyone too much…

PCMOs Zambia: When I first fell sick, I felt that the PCMOs were attentive in checking up on me. They also acquired transportation to bring me into the capital. However, once in the capital, I felt continually frustrated as I felt they were “underestimating” how sick I really was. It seemed they were making random guesses about my illness, and kept “waiting it out” rather than doing more. They kept telling me to eat and drink Oral Rehydration Solutions, and not taking me seriously when I said “I absolutely cannot eat”. I remember laying in the bunk bed literally thinking I was going to die and they were not going to do anything about it. At the time I even posted on Facebook, “I just wish they would put me in the hospital and hook me up to IVs”. FINALLY when I got to the point of throwing up constantly and developing a rash all over my body, the PCMOs sent me to the hospital.

Zambia Hospital: I finally felt taken care of. I felt the doctors were a bit more knowledgeable, and they were actually getting test results and talking with me. The PCMOs came in and out, but were overall not that helpful. I listened to them “argue” with the hospital doctor about flying me to South Africa. The hospital doctor wanted me on a private medevac flight. Peace Corps just wanted to put me on a regular commercial flight. Finally, I flew out, on a regular commercial flight, with one of my PCMOs accompanying me.

South Africa Hospital and PCMOs: The Regional Medevac Center and PCMOs in South Africa were wonderful. They were knowledgeable, patient, kind, and attentive. My care was mostly under hospital doctors/staff, but the PCMOs came each day to check on me and talk with me. I had no working phone, so they also allowed me to use their personal phones to call my mother in America. They helped me work through my diagnosis, and patiently discussed options for returning home to the U.S. They were in communication with DC and updated me on the plans. They made sure I had comfortable living arrangements until I flew out.

*** Note: I don’t know where/when this issue falls in the timeline… but someone somewhere (PCMO Zambia, DC Headquarters, or PCMO South Africa) chose not to tell me about my first positive HIV test result right away. They withheld the information, and I was “accidentally” told by the South Africa Hospital doctor instead. This little blip has continued to bother me…

Flight to PC Headquarters DC: I was a little off put that no one picked me up from the airport, as I was still pretty sick and weak. I was simply given an address of a hotel and told to make my way there.

International Health Coordinator: This person was extremely helpful, assisting me in every sort of issue- appointments, phone calls, insurance, etc. She has continued to be helpful even after Medical Separation, and still serves as a contact point for me within Peace Corps. I feel she genuinely cares about me and my case, and will continue to help me in any way I need.

PC Counselor in DC: My counselor was absolutely amazing! That’s all I can say!

Doctors in DC: They were very knowledgeable and up to date on research regarding HIV. I received extremely good medical care while there.

FECA (Federal Employee Compensation Act): Peace Corps Staff assisted me in writing and filing my claim for Federal Workers Compensation. I am lucky they did most of the work in filing the claim. My claim was accepted and approved very quickly, and I will have it to cover my HIV related medical care for the rest of my life. However, now that I am in the real world and attempting to use it, I have been running into constant issues. Doctors offices, pharmacies, etc. are not familiar with using this type of claim or forms, and are finding it to be difficult. I feel that it has and will be a continuous struggle and learning process.

Close of Service Process: There was a huge disconnect of information between DC Headquarters and PC Zambia. No one really took charge and told me what I needed to do to finish everything up and get closed out. I was passed around to different contact persons. I attempted to communicate with my APCD in Zambia on my own to take care of most issues. She did her best. It has been 5 months, and I still don’t have my belongings back from Zambia (though I think they might finally be on the way). PC Zambia has continued to give me no response about my money in my bank account in Zambia. As far as I know, my Description of Service Statement was never signed and returned to me or to Headquarters.

So, I hope that gives a little more information about my variety of experiences with Peace Corps staff during and after my illness. I can pretty much make the simple and quick generalization that Headquarters in DC and PC South Africa have been very helpful, whereas PC Zambia continues to be not so helpful.

So, as I answered Director Williams, “They are trying.”

Poll Results: BEFORE reading this blog... how did you view unprotected oral sex and HIV Transmission?

A total of 115 voters responded to the question: BEFORE reading this blog... how did you view unprotected oral sex and HIV Transmission?

10 (18%): Oral sex is a high risk activity and I was always safe with it.
15 (13%): Oral sex is low risk activity, but I still took it seriously and was safe with it.
81 (70%): Oral sex is low risk activity, but I didn't take it seriously and was not always safe with it.
9 (7%): Oral sex is a no risk activity.   Although this is a small sample, I think it does clearly show that there were/are disconnects between what we "know" about oral sex and its risks, and how we choose to act and use that information. 70% of voters responded as I would have. We know there is a risk associated with oral risk, and that it is a "low risk". Yet, for some reason, we choose to not take it seriously and practice it safely.    Now, I ask why? Is it that condoms/dental dams taste bad? Is it that we perceive the risk to be so low that we start to think of it as a safe activity? Is it that we are more concerned with simply preventing pregnancy, and the risk of STDs slips our minds? Other thoughts/explanations?

Some Good News

I called to get my latest lab results on Friday. Unfortunately, not all of the results were ready… we are still waiting for the viral load to come back. However, I did get my CD4 count, and it was way better that I would have ever guessed or hoped for! 675!  

This is up from a 340 count 6 weeks ago, and is 200 points higher than any count I’ve ever had since this all started!

I’m so thankful for this bit of good news. Hopefully I’ll get some more good news in a few days and find that my viral load is undetectable… Cross your fingers!

What am I doing to stay healthy and get my numbers where they should be? Taking my meds. Eating healthy. Emergen-C and Vitamin packets. And a bit of exercise (although I could probably stand to do a bit more). All of these things play a role in keeping a person healthy and keeping that CD4 up. (Also, if my viral load is in fact finally at undetectable, that can play a huge role in allowing my CD4 to increase and stay up.)

My Trip to Florida

As mentioned in a previous post, I made a trip down to Florida for a few days. This was my first time to return back to my home state in over a year. To be honest, I got a little emotional on the plane ride down. It brought me right back to my most recent plane rides- home from Africa and home from DC. Just being in an airport and on a plane again brought tears to my eyes, making me remember those first days and weeks of diagnosis.

 

 Tuesday night brought more emotions, as I received hugs from my Peace Corps Recruiter, as well as good college friends. We sat down in a crowded auditorium to hear Director Williams speak. He started by asking those of us who have served as volunteers to stand. Yep, more tears in my eyes. At various time during his speech, the emotions welled back up. Its such an awkward and unsettling feeling- to somewhat feel like a volunteer and somewhat not… to feel like you are a part of this group, but at the same time to feel that something so huge has set you and your experience so far apart… to hear people say “Peace Corps changes your life forever” and to laugh at the irony of how it has changed my life forever.

 After the speech, I had the opportunity to meet Director Williams (even though I was nervous and dreading it). I shook his hand and said “Hi. I’m your newest medical separee”. He said, “Oh, I’m sorry. What happened?” I hesitated, and all I could manage to say was one word “HIV”.  Yeah, I’d say he was a bit surprised to say the least. He gave me a hug and asked how I was doing and whether Peace Corps was taking care of me. I said, “I’m doing okay. And yes, they are trying”. That’s all I could manage. Me and my mom were both crying by that time.

The next night was my big night, my time to meet and speak to a group of future and returned volunteers. It was a small group, about 17 of us. I went through my story and answered questions. It was a good casual event, and I hope that it helped those who were there. Thanks Amy, for having me come down!

Poll Results: For Volunteers Only: Have you ever taken HIV PEP (Post Exposure Prophylaxis)?

A total of 74 volunteers responded to the question: For Volunteers Only: Have you ever taken HIV PEP (Post Exposure Prophylaxis)?

10 (13%): Yes
64 (86%): No

Thanks for your responses!

If you have any ideas for future poll questions, please let me know...

Poll Results: Have you ever had or been treated for a Sexually Transmitted Infection other than HIV (Syphilis, Gonorrhea, Chlamydia, Herpes, HPV, Hepatitis, etc.)?

A total of 161 voters responded to the question: Have you ever had or been treated for a Sexually Transmitted Infection other than HIV (Syphilis, Gonorrhea, Chlamydia, Herpes, HPV, Hepatitis, etc.)?

42 (26%): Yes
119 (73%): No
0 (0%): I don't know.

Thanks for your responses!

Two Speaking Events in Two Days

I am making a trip home to Florida in a couple weeks. I have not been there in more than a year. Unfortunately, my trip will only be a short two days, but hopefully jam-packed with fruitful activities. You see, I was convinced to return to my alma mater, the University of Florida, to grace the Director of Peace Corps, Aaron Williams, with my presence at his speaking event.

Okay, okay, maybe he doesn’t even know I exist lol… but others do, and they want me there. So, yes, I booked a flight down to Florida so that I may attend the Director’s event, and perhaps even get the chance to shake his hand or meet him. It has been suggested that as I shake his hand, perhaps I may even hand deliver a letter to him, outlining some of the issues regarding HIV and HIV Trainings for volunteers that I feel should be addressed.

I have begun to draft such a letter, but am finding it difficult. I do not in any way want to sound as if I am a whining baby, attempting to place blame on the Peace Corps. I do not hold a grudge towards Peace Corps. But, I do feel that some things could be improved upon. I do not want it to be my words and my words only. I have received so many comments and private e-mails from PCVs and RPCVs, sharing their own stories of risk, and their own complaints and concerns about what has or has not been done properly. I feel obligated to include some of these stories and concerns in my letter, so that we, together, can attempt to better shape the trainings and supports provided to volunteers. Please, if you are a volunteer, or past volunteer, and have any concerns relating to HIV or sexual education trainings and supports provided during your Peace Corps service, please do not hesitate to contact me. Let us take an active role in what happens to future volunteers.

In addition to attending Director William’s event, I have also been invited to host my own speaking event. I will be meeting with the University of Florida Peace Corps Recruiter, and a group of her future and past volunteers, to share my story and words about HIV. We hope to educate and inform, to share and discuss, to make a positive impact on these future volunteers who will soon be out there serving in countries all around the world.

If you are following me from around the University of Florida area, please contact me if you have additional interest or questions about these events.

The Normalcy of HIV

My sister recently started her own blog, primarily about her family's adoption process. However, she wrote a blog post about me the other day, and the seeming “normalcy“ of HIV. 

A few days after reading my sister’s blog post, I was riding on the bus to work. For some reason, the bus was extra crowded that morning (note: I say crowded in the American sense of the word… to Zambians or Peace Corps Volunteers all around the world, the bus would still be considered to be pretty empty). Anyways, according to my American perception of things, the bus was crowded, and we were squeezing in and touching up against each other. Nothing really stood out to me though. I was just taking a bus to work, sharing it with others on their way to work or other downtown activities. It was just a normal morning. I was just a normal girl on the bus.

And then my mind started wandering, and I remembered “Oh yeah, I have HIV.” (I had gone for days without thinking about it).

“But none of these people on this bus know that I have HIV. They are all pushed up against me, and they have no idea. To them, I am just a normal girl, on a normal morning, taking a bus to work.”

I smiled to myself. I thought, “Yeah, this is okay. I have HIV… but, so what? Its my life now. I’m used to it. It is my new normal.”

I’m not sure if this post is really making sense to others. Maybe you have to actually go through it in order to understand it. I guess I’m just trying to say that I am at a point where I can find some peace in this. It is becoming old news. It is now simply just a part of my life. It is a pill that I take each night. But I am still me. I am still normal. I can walk around and be myself. I can work. I can take a bus to work, and I don’t have to feel sad when I remember that I have HIV. I can interact with others, whether they know about my HIV status or not. I can smile about it. I can laugh about it. I can talk about it, if and when I want to. I can forget about it for long periods of time, and pull it back out when I need to. It is, and always will be, a part of me, yet it does not define me. I can keep on living.

A Touching Conversation

I had a talk yesterday with a fellow volunteer in Zambia. I sat on the couch crying as we were talking. He told me that after he found out about what happened to me, he marched into Peace Corps Zambia and told them "something needs to change here". He has since been working with them to revamp and redesign the HIV Trainings that Zambia volunteers receive. One of the changes they have made is making it more relative to volunteers, by having current volunteers share their own personal stories of risk and relationships. This includes talking about things like taking PEP (Post Exposure Prophylaxis). He told me that there has been a huge influx in the number of volunteers coming in and requesting PEP in the past few months, volunteers are treating it like "the morning after pill".

I feel a bit conflicted about this supposed influx of PEP use. On one hand, it is good that people know about it and are able to request it in order to keep themselves safe. On the other hand, if there is in fact an increase in PEP requests, does that perhaps lead one to question the underlying reasons and factors... if more people are requesting PEP, does that mean more people are participating in risky behaviors? And if so, shouldn't the Peace Corps (and other organizations) question themselves on whether they are doing an adequate job of educating and preventing the risky behaviors to begin with? Yes, PEP saves lives, but shouldn't we make every attempt to mitigate the risks as much as possible before needing to take PEP?

Although a bit outdated, this is what the 2008 Volunteer Health Report says about PEP:

(It would be interesting to know what the rates have been like since 2008). In lieu of this, I've placed a poll question specifically for volunteers regarding PEP... maybe we can get a percentage.

I have also added a new poll question for everyone, regarding other STIs or STDs. It is important to realize that all of these should be talked about too, not just HIV. Just for some extra information, here is what the 2008 Volunteer Health Report has on STDs:

* Unchanged over 10 years. Ouch.

* Bacterial = Relatively easy to treat and cure with the use of antibiotics.
* Viral = Difficult to treat. Must use antivirals, not antibiotics, to treat. Some vaccines have been developed to prevent some viruses. Some viruses may be impossible to cure. 

Poll Results: Would you ever date someone who was HIV+?

160 readers responded to the question: Would you ever date someone who was HIV+?

52 (32%): Yes
108 (67%): No

Thank you for your honest responses. It is good to know where I stand.

Counseling Today

I met with a counselor for the first time today. She is someone who works at an HIV Organization, and she usually deals with more drug and substance abuse counseling on an emergency and/or temporary basis. Luckily though, she is willing to meet with me as needed until my insurance issues get settled out and I can find a more permanent counselor elsewhere.

Our talk went fine, and as is typical for me (judging from my counseling sessions in D.C.), we talked much longer than we were supposed to. It is kind of funny though, because it is not really like we talked much about my own issues, more just hung out and talked in general.

There were a few things that we talked about though, that I thought might be good to share. She told me of a woman who feels so much fear and stigma, that she disguises herself when coming to the HIV Office. This woman has been hiding in  fear for years, unable to share her status with family or friends. In a way, she has isolated herself from her life and the world. She still can’t move on from blaming herself for the choices that she made (which were not even unusual or risky choices to begin with). She is afraid to form new friendships or relationships. She is totally alone, and struggling to keep herself going.

The counselor also told me of another man who recently passed on. He had been HIV+ for 20 or so years. However, she feels that it wasn’t necessarily the disease that killed him, but rather the constant mental and emotional stress of dealing with the disease that finally wore him down.

These aren’t isolated stories. These are the stories of HIV+ persons all around the world. I feel so much sadness and pain when I think about it. Why should the world judge and discriminate against people with this disease so much that they are forced to withdraw from the world and isolate themselves in fear and shame? Why is there so much shame and blame associated with this disease, but not with other diseases? Why aren’t people who smoke or who are overweight shunned or judged for the choices that they make on a daily basis?

As we talked more about the woman who feels so stigmatized, we came to another conclusion… that perhaps there is just as much stigma within her own mind, as there is in others. Perhaps by hiding and feeling ashamed and assuming that no one will accept her, she is never giving anyone the chance to.

I shared what I have learned from my own experiences… that coming out in the open with my status was surely a very scary thing to do. I was terrified of how people could or would react. But, I took that plunge, and I made the determination to share my story, and to educate… to spread awareness as best as I could. And in turn, what have I received? Overall love, support, and acceptance. People are responding on a gigantic scale. Sure, some are upset and confused and worried at first. Sure, some feel awkward and unsure about what to say or how to act. But with more and more discussion comes more and more knowledge and information. And with that information comes more and more comfort and support.

I cannot lock myself away. I cannot hide and stigmatize myself in my own mind. If I had, if I do, I will just begin to crumble and deteriorate under the stress of it all.

Send It Around the World!

I finally just counted up and organized all of the countries that I know for sure that my blog has been read in. I've been trying to keep track of this on an ongoing basis, but I know that I have missed some. Blogger only allows me to see the Top 10 viewing countries each day, and if I don't stay on top of it, they are are replaced with new ones. When this blog really exploded and was being passed all around, I have to admit I got a little overwhelmed and lost track. But, anyways, here is what I have managed to record...

1.  Argentina
2. Armenia
3. Australia
4. Austria
5. Azerbaijan
6. Bahamas
7. Bangladesh
8. Belgium
9. Botswana
10. Brazil
11. Bulgaria
12. Burkina Faso
13. Cambodia
14. Cameroon
15. Canada
16. Cape Verde
17. Chile
18. China
19. Colombia
20. Croatia
21. Cuba
22. Czech Republic
23. Denmark
24. Dominica
25. Dominican Republic
26. Ecuador
27. El Salvador
28. Ethiopia
29. Falkland Islands
30. Fiji
31. France
32. Gambia
33. Georgia
34. Germany
35. Ghana
36. Guatemala
37. Guyana
38. Honduras
39. Hong Kong
40. Iceland
41. India
42. Ireland
43. Israel
44. Istanbul
45. Italy
46. Japan
47. Jordan
48. Kenya
49. Lebanon
50. Lesotho
51. Liberia
52. Macedonia
53. Madagascar
54. Malawi
55. Mali
56. Marshall Islands
57. Mauritius
58. Mexico
59. Moldova
60. Mongolia
61. Morocco
62. Mozambique
63. Namibia
64. New Zealand
65. Nicaragua
66. Niger
67. Nigeria
68. Norway
69. Pakistan
70. Panama
71. Paraguay
72. Peru
73. Philippines
74. Puerto Rico
75. Rwanda
76. Saint Lucia
77. Senegal
78. Sierra Leone
79. Singapore
80. South Africa
81. South Korea
82. Spain
83. St Vincent & Grenadines
84. Suriname
85. Swaziland
86. Sweden
87. Switzerland
88. Tanzania
89. Thailand
90. Togo
91. Trinidad & Tobago
92. Turkey
93. Uganda
94. Ukraine
95. United Arab Emirates
96. United Kingdom
97. United States
98. Venezuela
99. Vietnam
100. Zambia

(List Updated On: March 20, 2012)

I am so happy that people have found this blog to be both helpful and interesting. Please keep passing it along. HIV needs to be talked about more. People need to be aware of and educated about it. I will do my best to keep up with it, and keep bringing you useful information.

P.S. If you are reading this blog in a country not shown on my list, please let me know. Thanks!

Happy Anniversary!

1/31/2012
One year ago today, I got on a plane to Philadelphia for staging for the Peace Corps. One year ago today, I met the other 28 volunteers that I was to spend my next 2 years in Zambia with. I can't believe so much time has passed already. I can't believe I am here, instead of there. Of the 29 of us that started that journey a year ago, 7 of us are already back home... 3 due to Medical Separation, and 4 due to Early Termination. 22 brave volunteers remain. I wish them luck, happiness, and good health as they continue on in the journey that we others could not quite complete. Happy Anniversary REDs 2011. Do us proud!