I am 28. White. A Female. And a former Peace Corps Volunteer. I am HIV Positive. This is my story of how a few months, a few people, and a few events in Zambia changed me and my life forever. This is the story of how I contracted HIV and brought my Peace Corps Journey to a crashing halt... and how I am working now to pick up and put back together the pieces of my life as a newly diagnosed person living with HIV. This was not the journey I had originally planned... my path has traumatically and dramatically changed... but it is the one I am on now. There is no going back. There is only forward. I welcome you to follow along with me as I attempt to explore this new life ahead of me, whether you are someone from the Peace Corps community, or someone living with HIV. I welcome your comments, questions, suggestions, and opinions. Let us go forward together. To start from the beginning, click here He Gave Me More Than A Bracelet.

Sunday, May 27, 2012

Life Decisions


I’ve never been so confused and distraught in my life (that may be a slight exaggeration, as I have obviously had other difficult times in my life… but right now, it’s just what I’m feeling). 

Some of you may have noticed that I’ve been slightly quiet and MIA the past few weeks… and there is a good reason for that. As you know, I’ve been applying for reinstatement, and the process has been moving extremely quickly and easily. You may also know that we were just waiting for my most recent doctor’s appointment and lab results to come back…

I guess I can start with the good news… my viral load is still Undetectable, and my CD4 count was at 513 (which is slightly lower than last time, but still good). If you’ve been keeping up with my story and process, you know that these results should mean good news for Peace Corps and my reinstatement.

Unfortunately, something else has been going on… I have been having a minor (or not so minor) medical issue for the past month. I haven’t mentioned it before for a number of reasons (1) It really did start out as small (2) The location and nature of it is a bit embarrassing (3) I was hoping it would not be a big deal and would be resolved easily. However, so much has come up from this minor issue that I’ve now decided that I might as well get over my embarrassment and share it with you…

So, about six weeks ago I noticed what looked to be like bug bites on my butt. But, they seemed to be getting worse, spreading, and not healing. I then decided, “Okay, weird, I have some kind of mysterious rash on my butt”. It was still a very minor issue at this time, but itchy and irritating, so after 2-3 weeks of it, I went in to the doctor.

The doctor’s first diagnosis (i.e. guess) was a fungal infection, and she prescribed me an anti-fungal cream. Okay, no big deal… people with HIV tend to be more prone to fungal infections. Well, either the fungal cream, or time, or some other unknown factor actually ended up making the rash about 10 times worse.

I went to the doctor again the next week. The doctor’s second diagnosis (i.e. guess), against my very strong objections, was Herpes. They prescribed me Valtrex and made me take it while we waited for the Herpes blood and culture results to come back. One week later, not to my surprise at all, the Herpes tests all came back Negative. As you can guess, the rash continued to get worse.

I went in to the doctor for a third time. This time the doctor’s diagnosis (i.e. guess) is Impetigo/Staph/Strep Infection. They prescribed me an oral antibiotic to take as we wait for the bacterial culture results to come back. I do not want to jinx myself, but I actually think they may have gotten it right this time, as I have been on antibiotics for 48 hours now, and it finally seems that my rash may be improving a bit.

I wish I could share a picture with you, so that you all could know just how serious my infection got… but I will maintain some level of privacy and refrain from doing that. Just imagine a butt with more than 50% of its area covered with inflamed, bright red, blistered, and oozing sores. It itches terribly non-stop, and I have been on near constant doses of Benadryl for weeks now. I soak or wash in the bathtub multiple times a day and night, and I sit and sleep on ice packs. It has been absolutely MISERABLE. 

I do not tell you all of this in the hopes to gross you out or scare you. Rather, I just want you to understand a bit of what I’m going through, so that you may better understand what I am going to say next.

Ever since this whole HIV thing started, I have been surprisingly positive. I have optimistically clung to the idea that as long as I took my medication, got my viral load undetectable, and maintained a high CD4 count, that I would be just as happy and healthy as anyone else. And up to this point, nothing has really challenged me on that. I haven’t even so much as gotten a cold or cough or the flu, even when many around me were sick.  

But this, this has been a punch to the gut, a slap to the face, a major wake up call. The doctors can’t even say for sure whether this infection is even related to my HIV or not. In reality, we still are not even sure that they have figured it out and resolved it completely yet. But, regardless of what it is, and how or why it came about, it has forced me to admit some things to myself… and to you.

I have to admit that my body does not feel the same as it used to.

I have to admit that it seems to take me weeks to heal from simple mosquito bites or ingrown hairs or other irritations.

I have to admit that random areas of my skin are dry and itchy, my hair was falling out a few months ago, and I have experienced fungal infections.

I have to admit that I am still emotionally dealing with this disease.

I have to admit that I am still very early, only 8 months, into my diagnosis.

I have to admit that I am not invincible.

I have to admit that if I go back to Africa, issues could come up, and I would not have any of the conveniences (such as ice packs, pharmacies, quality medical care, or even clean water) to deal with them as I do here.

And I have to admit that that scares the heck out of me. 

I have to admit that I may not be as brave as I would like to think I am.

I have to admit that I MUST put my health first.

And I have to admit that maybe this means that I must let go of my dream to go back to Peace Corps.

As always, I welcome your wisdom, comments, and opinions.

38 comments:

  1. I think it's so admirable that you want to go back & finish what you started....but I agree how much help could you be if you fell ill and had to come home again. I know it would probably devastate you. I know when my husband did the PC in mali, his appendix almost burst there & he had to be airlifted to Egypt & then back to dc-- I can't even begin to imagine how it would be for you. There's so much good to be done here, too. I'm sure you could find something to fulfill your passions & feel like you are making a difference! This blog is a great start:)

    ReplyDelete
  2. Take care of yourself! You are respected so deeply for your honesty and drive. Take a little more time to decide what's right for you. You're a smart girl. Love you!

    -Nikki

    ReplyDelete
  3. I agree with the previous comment and would like to add that you posting this update is very, very brave of you Jessica. Perfection and bravery are definitely not the same thing. Vulnerability is much closer to bravery. I'm blown away by your honesty and willingness to share your experiences, no matter how difficult they are to share. You are one of the bravest Peace Corps Volunteers I have ever met, not because of where you are but because of who you are and how much you care. Thank you for continuing to support others and care so much about them, but thank you especially for taking care of yourself and putting your own happiness and health first. I think that's what we can all agree we want for you more than anything.

    ReplyDelete
  4. you are not alone, and the Peace Corps is not the holy grail of international development or education. we scored in the same personality group!!!! :) i love your pragmatism and ability to look to the past and the future. you are an incredible and compassionate teacher, and you can still give that to the world. i made some realizations myself, my friend, and i thought to myself, the dream was never really about the peace corps by itself, it was to serve. to do my part. to experience. to learn and to teach, in their respective times.

    it was a family legacy thing, at some points, but mostly it was my dream to make some kind of difference and earn my keep as a citizen of the world. you can still do that with moxie and grace and success. our friend chinua achebe said "Things Fall Apart." he got his title from a yeats poem:

    The Second Coming

    Turning and turning in the widening gyre
    The falcon cannot hear the falconer;
    Things fall apart; the centre cannot hold;
    Mere anarchy is loosed upon the world,
    The blood-dimmed tide is loosed, and everywhere
    The ceremony of innocence is drowned;
    The best lack all conviction, while the worst
    Are full of passionate intensity.

    Surely some revelation is at hand;
    Surely the Second Coming is at hand.
    The Second Coming! Hardly are those words out
    When a vast image out of Spiritus Mundi
    Troubles my sight: somewhere in sands of the desert
    A shape with lion body and the head of a man,
    A gaze blank and pitiless as the sun,
    Is moving its slow thighs, while all about it
    Reel shadows of the indignant desert birds.
    The darkness drops again; but now I know
    That twenty centuries of stony sleep
    Were vexed to nightmare by a rocking cradle,
    And what rough beast, its hour come round at last,
    Slouches towards Bethlehem to be born?

    scary seeming... dark imagery and clear allegories and references to the 'end of times.' but really its about the ebbs and tides of life, our odd way of feeling a sense of doom when things start to unravel, and the idea that there is always something new around the corner, even upon what we perceive as the 'end.' there is no such thing as you failing. and as you said YOU MUST put your health first, why? because that's all that really matters. reconstruct your dream... you are going to do great things (aside from those you have already done). and no matter what anyone tells you, you are an RPCV, not an ET, and you DID, accomplish the Peace Corps. WORD.


    Lovelovelove

    ReplyDelete
  5. First, of all you were missed! I had wondered where you were...

    As a former PCV, I completely understand your desire to want to COS and your desire to go back. It's something you had probably dreamed of and it was an experience of a lifetime. But, as you have mentioned in a previous blog... going the second time you already know what you are in for. You know how hard it is and you know what to expect. I think most PCV's admit that it was a great experience and that they loved it. But, I also wonder how many RPCV's would actually do it again knowing what they know now?

    As the person before said you ARE a RPCV. You have accomplished more in your time being HOME about educating the WORLD about HIV than what you ever could have done by sitting in a village in Zambia for 2 years educating a village. (I know when I reflect on my PCV service, I probably only had a significant impact on 5-10 people at the most?)

    Why do you want to go back? To prove to yourself you can do it? To prove it to your family/friends? To share your experience of HIV and help the people there? To say goodbye and tie up loose ends there? Or because it is your true life dream and you will never forgive yourself 10 years from now for not giving it a second try? Could your reason for wanting to go back be accomplished through a personal trip back to Zambia and/or working on HIV/AIDS education through non-profit work here in the USA?

    Only you can make that decision and I wish you the best of luck in your decision making. I am sure your family and friends will be thrilled if you make the decision to stay home and work on your mission of education about HIV stateside. And everyone will root you on if you go back even if they are worried to death.

    All that being said, PCV Zambia will probably place you for your service in a easily accessible location to medical support. They are not going to stick you as far out based on the circumstances. (Even though that is probably not want you to hear.) Good luck!

    ReplyDelete
  6. Hi Jessica,

    First of all, I admire you so very much for this blog and for how you are handling the challenges in your life right now. I'm not a PCV, but I am living and working in the developing world right now, and facing a lot of the challenges that come along with that, and your blog has been really important to me in my time here.

    I'm sorry that you're dealing with some health issues... and I do want to echo some of the above sentiments -- that you can do wonderful work from the U.S. and don't have to be in Zambia or elsewhere in the developing world.

    You do need to consider your own health and well-being... I've had some mild health issues while I've been living abroad -- things that would've been as simple as a doctor's appointment and prescription in the U.S., which have taken months to get cleared up over here for a variety of reasons (poor healthcare, inability to communicate with doctors, inability to get doctor's appointments, etc). As I said, the health issue I've dealt with here was very mild... and caused me a HUGE amount of stress and difficulty because the quality of healthcare here and my ability to access healthcare were just not adequate. Your experience might be different, but I do totally understand your fear of returning to Zambia where you might not be able to access adequate health services.

    I'm sure that people will support you whatever you decide, myself included. But I don't think there's a person in the world who would not understand your decision to stay in the States; there's no one who can say that you're not brave, your whole story is so incredibly brave and I'm truly humbled by the way that you are living your life.

    Stay strong and I'll be sending you good vibes!

    ReplyDelete
  7. Actually, if it were me, and PC was still my dream, I would return to Africa and try. People rarely know how much they can handle until they are knee-deep in it all. If you can't do it, then you can just return. At least this way, you won't always wonder "what if".

    ReplyDelete
  8. Hey Jessica!

    Though it isn't at all the same thing, I'm at a similar impasse. I miss Zambia so much, but I have to be honest with myself if now is the right time to return back. My ankle will take 6 months+ to fully heal and my physical therapist thinks I may always have a limp. I have to sincerely think of my healing if I want to get 100% better. I think you are one of the most brave and determined people I know. I support you 100% if you want to stay in the USA or go back to Zambia. I just want you to know, that as others have said you are an RPCV. You don't have to prove to anyone that you "tough it out", if going back is something you NEED to do, do it. But know that it isn't wrong to stay home. It was a tough decision for me to make, and I'm still grappling with it. If your still in NY you and I should get together and chat.

    Stay well!
    Musi

    ReplyDelete
  9. Jessica,
    I am an RPCV from Kenya- you story is so moving I wish you all the best...
    UGH so sorry about your current health battle, google "molluscum contagiosum" see if that might be it? It is acually viral...check and see if this is it- antibiotics won't work, but there are other treatments.

    ReplyDelete
  10. Sweet Jessica-

    It breaks my heart that you're having to go through this. I'm sure that you've heard this a thousand times over again, but your help is needed here in the United States, too. Your message is such a positive one, and a human one (even when you don't think you're being positive) and it needs to be heard. We're all here for you, praying for you and for your continued strength. But you don't have to be strong all the time, showing your weaknesses is part of being human.

    Sending love from Those *Other* Thompsons...
    Liz, Mike & Hayden

    ReplyDelete
  11. Do you have your heart set on going back to Zambia or would you consider/have the option of Peace Corps service in a region like Eastern Europe where you would have greater access to good medical facilities? I'm not discouraging going back to Zambia at all, in fact if you decide to go I would be totally rooting for you, just throwing another possible option out there.

    ReplyDelete
    Replies
    1. This was my thought... another country with stable clean water, electricity and more healthcare options (i.e., pharmacies) might be a perfect compromise! I joined the Peace Corps as a way to live and work in east Africa and perfect my Swahili, but Peace Corps had other plans for me, and I couldn't have been happier with my post in Mongolia! Good luck and I'm glad to hear your rash is healing. -Susan

      Delete
  12. I think you are so incredibly brave and strong to make that decision. Peace Corps isn't going anywhere, and neither are you, so you can always reinstate/reapply later if you want to. You have a long, amazing life ahead of you, so you don't have to do everything now...and as someone else said, you've done really incredible things already in the few short months since you were diagnosed. No matter what road you take, you have had (and will continue to have) a powerful impact on thousands of people (how many people can say that?). I know that when I leave to start my PC service in Africa this month I will carry your message with me.

    Love and hugs! I hope your rash heals ASAP! (and thank you for sharing! :)

    ReplyDelete
  13. Sweet friend,
    I wish I had more minutes on the internet to write to you, but just wanted to let you know quickly that I UNDERSTAND and I've been in a VERY similar situation. I get it. You have a right to be confused, emotional, and undeciding. Take time. You're not a failure. You're strong, and you're planting seeds wherever you are.

    Side note: I passed your email/this website on to our HIV/AIDS trainer here in Jamaica, and he was encouraged by your story. It's spreading!

    Praying for you!

    love, kate

    ReplyDelete
  14. I heard recently that transparency and vulnerability are the ultimate key to healing (yourself and others). Pain and suffering are tough but as I said before, God doesn't waste a thing and He WILL use this for good! It is where we suffer the most that we make the greatest impact in the world around us. You are more than a conquerer Jessica! I love you and support you always. Love, Aunt Sharon.

    ReplyDelete
  15. Hi Jessica,
    I accidentally cam across your blog while searching for something else. I am positively living with HIV since my diagnosis on 3 July 2004. I have also been through similar medication (since 17 October 2004) as you and I am currently on Atripla and coping pretty well. At the beginning it was TOUGH! But like you it didn't stop me from going after my dreams - though with some changes. I went ahead and got a Masters degree and a PhD degree. Things I always wanted to do, but just being diagnosed made me get them over with. I equally went through the rash - horrible, itchy and blotchy both on my bum area and my neck (practically had to have my neck covered to prevent being questioned about the unsightly sores. After a while they cleared and I've been pretty rash free for a while. we never really found out (despite various tests) what set them off but I will be praying that the rash dissappears soon as they can be so uncomfortable. You are a really strong young lady and I can see you living and actualising your dreams. However, with the diagnosis, you may have to make some changes to some of your dreams in order to live a fulfilled life. I tell myself that HIV does not define me. I choose to let go of the stigmas around it (I am a 38 year old black african/british, who caught the virus through intercourse with my husband). There are times that I want to ask why, but then I hear why not me. I chose to live, I chose to live a fulfilled life and I chose to be who I want to be with or without HIV. Please take your medications regularly and keep on living.

    ReplyDelete
  16. Hi Jessica!

    These are some tough decisions you have to go through. Know you have all of the love and support of people from all over the world (and right here in the U.S.).

    Hope to see you posting again soon. You are in my thoughts.

    ReplyDelete
  17. Jessica darling,, where did you go? is everything all right with you? please turn up ! x

    ReplyDelete
  18. Hi Jessica, I've never met you, but just want you to know that you have so many people out there who care about you! I really miss reading your updates and hope everything is alright. I think you're an extremely brave and open person, and I just hope you're doing alright.

    ReplyDelete
  19. Hi Jessica,

    I keep checking in with hopes that you have posted. I have been following your story since the beginning and am now very concerned as it has been 6 weeks since your last posting. Your absence from your blog seems out of character for you, hence the cause of concern.

    You are in my thoughts and prayers and like others, I hope you will post soon.

    All my best,

    A concerned reader, Mary

    ReplyDelete
  20. Hey- I just wanted to echo everyone else's recent sentiments. I've been checking in occasionally since your last post and hope you're doing alright. Thanks for everything you have shared with us.

    ReplyDelete
  21. Jess what's going on? are you OK? we're all worried about you, Please at least say that you're alive

    ReplyDelete
  22. Jessica, I wanted to tell you how inspirational your Blog is. The title itself, no going back there is only forward I keep repeating to myself. I made a decision 7 months ago that I regret. I think about your situation and it really puts my life in perspective so thank you. Hope you are okay.

    ReplyDelete
  23. Haven't heard from you in some time! I hope you are doing well. Those of us following you from Uganda certainly miss your updates and infinite knowledge.

    Thinking of you always!

    ReplyDelete
  24. Yeah, what they said! Say something! We worry!

    ReplyDelete
  25. hope you are doing ok! please update us!!

    ReplyDelete
  26. Jessica, please post something, anything.....we care

    ReplyDelete
  27. please update us!

    ReplyDelete
  28. Jessica, I also would love an update. I'm keeping you in my prayers.

    ReplyDelete
  29. Hmmm, still nothing from Jessica. That is worrisome to me. If Jessica is unable to post, a quick update from her mom, sister or a friend would be soooooooo appreciated. I did check her sister's blog listed on Jessica's home page and she has not posted since 5/28, one day after Jessica's last posting here.

    I hope all is okay with her and her family. Sending prayers and hopeful thoughts their way.

    A Concerned Reader, Mary

    ReplyDelete
  30. I spoke with Jessica via text and she is alive and well. She has just been SUPER busy with work and life!!!

    ReplyDelete
  31. We hope so.................to above

    ReplyDelete
  32. To Anonymous,

    Thanks for letting us know Jessica is well! Hopefully you told her she has a cast of worried followers! I look forward to her next post.

    A concerned Reader, Mary

    ReplyDelete
  33. Get better, Jess ! x

    ReplyDelete
  34. hope you can update us all at some point! i have been following this blog for a while and enjoyed reading your updates. hope all is well!

    ReplyDelete
  35. Good evening! My name is Carl Weitz! I am currently a PCV serving in Costa Rica! I just want to let you know to never let go of your PC dream. I really would like to get in touch with you about your PC service. Do you think that for all intents and purposes you would only be opening to serve in Africa? I think I could talk to my country director and see if maybe you could try out an urban placement in Costa Rica. Costa Rica's post is very successful and has a history of accepting volunteers that have certain medical conditions. There is a TEFL program coming in in February of 2013 and you could be assured a urban placement.

    I am a big proponent of yours, as is our medical PC staff in Costa Rica. We were all showed your story during a medical training during PST. You can email me at c.weitziii@gmail.com.

    Be safe

    ReplyDelete
  36. Jessica,

    Came across your blog randomly and just wanted to echo what so many others have said in their comments, that your story is touching and your choice to share it, inspiring. I'm currently a PCV and believe you have a lot to teach all of us and PC as an organization. A heartfelt thank you for being so frank about your diagnosis and your emotions, and for taking people along with you on this difficult journey. Know that you have many, many people rooting for you. Keep fighting, and rock on.

    ReplyDelete
  37. Jessica,

    Hoping that you will SOON have a few minutes to let us know how you are doing.

    I think of you often and truly hope you are okay and am very curious how the past 3 1/2 months have been for you.

    Best wishes & continued prayers from me to you.

    A concerned reader, Mary

    ReplyDelete