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.

My Interview With Peace Corps 101

So, a little over a week ago, I had the great opportunity to be interviewed on "Peace Corps 101 with Travis Hellstrom" on en*theos Radio. Travis is a Peace Corps Volunteer in Mongolia and has recently been hosting a 6 week online course about Peace Corps, featuring a number of guests, speakers, and professors. Now that the 6 week course has finished, Travis is launching a new series of interviews with special guests. And I got to be one of the firsts!

Please click here to view my interview page. At the top of the page you can click on the arrow to listen to my interview, or you can choose to download the MP3 file. Here is a little preview...

 

Interview with Jessica

Posted: May 8, 2012 @ 2:00 PM

In this interview, Travis sits down with Jessica, who served in Zambia as a Peace Corps Volunteer and was medically evacuated after she contracted HIV. Her popular blog, No Going Back. There Is Only Forward. follows her story, medical evacuation from Peace Corps and her current adventure as she applies to be reinstated as a PCV.




If you are interested in downloading and listening to any of the broadcasts from the 6 week Peace Corps 101 class, please click here and sign up for the course.

An Update on Reinstatement

I do not have much big news to give you about my reinstatement, but I do have a few additional bits of information to add in.

First, I found out (through the always wonderful Facebook) that both new training groups are heading to Zambia on July 16th. This is slightly different than what I had originally planned on, since I was expecting the Health group to be going in August as it did last year. Not a big deal... just moved up a couple weeks sooner.

Second, I received confirmation from my Country Desk Officer that the idea is in fact that I would join the Health group in July, and that the Country Director is in favor of that. I also found out that there is not a 6 week deadline regarding Reinstatements, as there is for original invitations (Original invitations must be received and accepted at least 6 weeks prior to the departure date). This simply means that whenever Medical Clearance is given, they can proceed with making travel arrangements, etc., and I do not have to stress about it all being completed 6 weeks before departure.

Other than that, we are all just waiting for my doctor's appointment on May 18th. The lab work done that day will basically decide all else.

I have to admit that I was having a little bit of a stressed out meltdown about all of this the past few days. You see, ever since I have had HIV, I always get worked up and stressed out before going to the doctor and getting lab work done. It's so scary never knowing what those numbers are going to come back as. Hopefully, I will eventually get used to it and not worry about it so much.

Yet, with so much riding on this month's particular lab work, I am even more stressed out than normal. Basically obsessing about whether or not my CD4 will come out good or not. So... I'm trying to not get sick and to take my vitamins and eat healthy as much as I can, but really I have little control over it... and no way of measuring or knowing until the results come back. It is hard to think that the future of my next 2 years will all come down to what that one number comes back saying.

In addition to stressing about my lab work, I'm starting to stress about the whole reinstatement thing in general. With it moving closer, it is becoming more real, and I find myself obsessing about whether or not I am doing the right thing. Do I really want to go back? Is everything going to work out? Am I putting my health at risk by going back?

It is also very different going back for the second time. When you first depart as a Peace Corps volunteer, you really have no idea what it is going to be like. You have all these ideas and fantasies in your head of what your service and life will be like, and a lot of times it's pretty "idealistic". However, when you have already been there once, you are not awarded all of these same idealistic fantasies. You have a more "realistic" view of what it will be like. You already know about some of the difficulties and troubles you will face, and this makes it a little bit more challenging to get so excited about it.

I don't think this necessarily means that I don't want to go back. I think it is probably pretty natural in a situation like this to be having some of these thoughts and feelings and concerns. And I think I will be able to move past it as more of the "unknowns" are figured out and decided.

Please wish me luck and send some good vibes my way, as I try to work through all of this and settle my mind and worries. The stress I've been putting myself under probably most certainly is not good for my immune levels!

To Disclose or Not To Disclose?

So, there seems to be this growing trend of families adopting HIV positive children, which I think is totally awesome! Many of theses families also seem to be blogging about their experiences, and becoming Educators and Advocates for HIV, which again, I think is awesome! I have posted a few of the blogs/adoption sites on here before, and I continue to hear about more, mostly because my sister and her husband are currently on the road to adoption (not necessarily for an HIV positive child).

But, today, I just want to look at this whole situation a little more and try to express some of my feelings about it. To be honest, I keep finding myself continually torn as I read these families' blogs. On one hand, I applaud their efforts to raise and spread education and advocacy about HIV. I think they are doing a great job of it too. But, on the other hand, I keep finding myself having an unsettled feeling about the fact that they are choosing to disclose their child's HIV status before or without that child having any choice in the matter. I really can't quite make up my mind on whether I agree with this or not. Let me try to get some of my mixed feelings out about it here, and then maybe others can join in and give their input also...

Some Pro's of Disclosing

• The family becomes instant advocates and educators for HIV.
• Family, friends, and strangers learn more about HIV, and learn to better accept people with HIV.
• The child may be raised feeling totally accepted and normal, and not have to be ashamed of his/her disease.
• More people learn that HIV adoption is an option.
• Maybe it will lead to more widespread acceptance, and help to end stigma and discrimination.

Some Con's of Disclosing

• Sometimes it is solely the parent's choice, and the child is being afforded no power of his/her own in making the decision to disclose.
• This could lead to unwanted discrimination for the child... in schools, activities, friendships, relationships, and even jobs in their future. 
• Once this child's name is linked to HIV, in full site of the public eye, he may never be able to go back and erase that. 
• Not all individuals (adults or children) are made to be advocates. This child may not want to disclose and become a life-long advocate. MANY people with HIV feel more comfortable keeping it private, and that is totally okay.
• If a child isn't involved in this decision-making process to disclose, it may later become an area of resentment or issue within the family.

Some Other Random Thoughts I've Had About It:

• Choosing to disclose your child's HIV status as a baby is a bit like baptizing them as a baby... making a huge life decision for them, before they are even ready to learn, understand, or form their own opinions about it.
• What if my mom, months ago, had decided that she had the right as a parent to disclose my HIV status to whoever she wanted? (Or maybe people will say this is different b/c I brought it upon myself whereas these children were just born with it?)
• Does this issue/situation change at all depending on whether this is an adopted or a biological child?
• Many professionals (social workers, doctors, etc.) in Pediatric AIDS Units often discourage families from disclosing to schools and other places unless absolutely necessary. Should we trust these professionals, or just make our own opinions of what is best?
• Is there a way that families can still be HIV Advocates and educate about the disease without disclosing the child's status?
• We would share with family and friends if our child had another disability, so why not HIV? Is it or should it be different?
• Couldn't families just hold on to the information for a bit, and then once the child is old enough, let them be a part of this huge decision making process... at which point the family could still become the advocates they so desire to be?

So, yeah, there are my ideas. I know they won't necessarily sit well with everyone, but that's the point! We are all entitled to an opinion! Please feel free to share yours. I think I'll even make a poll question about it (haven't done one of those in a while).

Here is a link to a blog post discussing a mother's feelings about disclosure that I thought was pretty good.
http://projecthopeful.wordpress.com/2011/03/21/your-questions-answered-the-disclosure-decision/