Monday, March 10, 2014
I want to apologize for the large passage of time since my last true update. During the past two weeks, I have been very sick and disheartened. I want to thank everyone who has sent messages, comments, and emails (special thanks to English4U). I have read everything, but haven't had the energy to respond! I am sorry for my sparing communication, I hope to be well enough to catch up with all my communications soon.
After completing my first round of treatment, which I was told, "Always Works," I have had my worst parasite-related attack yet, thus meaning that, like many others around the world, I have a drug resistant strain of BH that mutates and expands with each unsuccessful treatment.
During the past 10 days, I have discovered that BH is hugely misunderstood and mismanaged in the medical community around the world. The treatment plan I am on (while hugely successful for other protozoan parasites ) has a success rate of less than 1% in the pathogenic strains of BH, of which I am most certainly host.
In the past two weeks, I have undertaken major research on BH and it's side effects. Most helpful has been joining an online community of BH scientists and patients. Through the group, I have discovered many things. Most notably, there is only one form of treatment for BH with a success rate of over 60% and it is not prescribed by U.S. Doctors , but rather a clinic in Austrailia. There is, indeed, only 1 doctor in the U.S. who is currently diagnosing and treating pathogenic strains of BH.
In addition, I've discovered that my Beninese diet (high in legumes like beans and peanuts as well as simple starches and sugar ) is exactly what scientists feed BH in lab settings to cause a rapid proliferation of the Protozoa. Since discovering this, I have dropped my vegan diet and switched to the PALEO diet, which has showen the greatest success in starving the BH parasite, and helping the human- hosts maximize their energy.
BH causes a host of symptoms including chronic fatigue. At this point, I sleep 13-18 (continuous) hours a night. BH also causes various rashes and skin conditions (I have 3 now), cognitive fog, anxiety, panic attacks , and depression (when toxins are released into the bloodstream), distended gut, severe dehydration, and many gastrointestinal problems and damage (most mimic IBS). I have all these things, but the fatigue is the most disruptive. I have about 4-5 hours of normal energy a day (in comparison to 14 high energy hours per day 1 year ago).
Going back to Benin is not high on my agenda right now. Finding a Dr. who is willing to properly treat this parasite is my main focus! Unfortunately most U.S. Doctors are misinformed and are unable to diagnose or treat the newest strains of BH, which are serious. If you do a quick google search of BH you will find many sites claiming that it is" unpathogenic" and doesn't need to be treated. This refers to the initial strains of the parasite, which behave very differently from the newer drug resistant strains. Unfortunately most U.S. doctors were trained based on research on BH from the 1990s. This , clearly, is insufficient for a parasite capable of mutating every 10 days.
My current treatment plan is scheduled through the end of April and includes Internal Medicine specialists and a psychiatrist who specializes on the effects if parasites on the brain. My next challenge will be to try to convince these doctors to work with the (very limited number) of international practitioners capable of accurate diagnoses and treatment of individual strains of BH.
A recent study in the BH community, of which I am member, showed that my treatment plan was successful for only 1 of 400 members, although it was prescribed to over 380. Many members underwent 6-12 different treatments over several years before they found a successful treatment. Even after successful treatment, most people with this parasite work for years to repair the damage the parasite did to their gut.
This has all been very difficult for me to accept and process, but I am lucky to have been given the contact information of the only specialist in the U.S. just 15 days after my diagnoses . This is unheard of, as most people don't get a diagnoses at all until they've had the parasite for several years. ( indeed this sneaky parasite shows up only when actively feeding in about 1/9 of tests) and don't realize the medical mismanagement until having underwent several rounds of unsuccessful treatment.
The best treatment for BH is not available in the U .S. (It must be shipped internationally) but I am hopeful that I can convince my treatment team to collaborate with international experts! Please send me some luck in this department . :)
For accurate information on BH, please visit the following websites:
Wednesday, March 5, 2014
Thursday, February 27, 2014
ABOUT MY PARASITE
An image of the parasite living in my body. I can't lie, the parasite is beautiful!
My Doctors at the University of Michigan Hospital found my parasite (see recent Reiki Healing video). It is a new strain of an old parasite called "blastocysts Hominis." Say that five times fast. :)
The protozoan parasite was formerly considered only mildly harmful. Then, after research exposed the parasite to be quite harmful to some patients, it was (over) treated with antibiotics. Now, as a result, some drug-resistant strains exist.
While some strains go undetected and present only mild symptoms, other strains wreak havoc on the host and lead to very serious damage and sometimes death. While some people hardly notice the symptoms, others are so symptomatic they cannot maintain their day to day life (this is me).
The parasite is found in the U.S., but generally international strains are treated more seriously. When you count all blastocysts strains, millions of people have been effected. Although research has been done on the parasite, it is difficult to find information about how it grows and develops, and it is difficult to identify the individual strains with normal tests.
It is uncertain which strain I have or how long I have had it, but doctors have already started my treatment, which, for now, includes strong antibiotics (over 9 times the normal dose) spaced at regular intervals throughout the the day and night.
After this initial 10 days of treatment, I will be tested again for the parasite. If it is still in my system, i will begin another treatment.
The parasite causes a lot of symptoms that I have had for several months including: chronic fatigue syndrome (in my case, sleeping 14-18 hours a day), cognitive impairments (memory loss, mild loss of time, brain fog, and intermittent depression), significant intestinal pain and swelling, strange food cravings and weight gain, and a number of flu-like symptoms (I will leave those up to the imagination).
At this point I have become accustomed to feeling quite sick and have all but forgotten what it feels like to have energy, health, and vitality! The prospect that my parasite could be gone within the next month is unbelievable to me. A return of health would be the greatest gift I can imagine.
For new and emerging research on blastocysts Hominis see: http://www.blastocystis.net/2014/02/this-month-in-blastocytis-research-jan.html?m=1
* the article shows that it may actually interfere with/minimize harmful effects of other parasites like malaria and typhoid. Wow, maybe my parasite actually is protecting me from something worse!
RETURNING TO BENIN
It is uncertain whether I will be cleared to return to Benin. If my health is not restored in 3 weeks (end of March) I will be medically separated. My International Health Coordinator (a former Doctor, working for Peace Corps in Washington DC, who will help make the decision about medical separation) suggested that separation is highly likely. On va voir (we will see).
If I am medically separated, after finishing my treatment (which was estimated at 3 months), I will work with my graduate school to design a new plan for my research ( perhaps a new project). It is likely that I would return to Benin as a researcher for a period of a couple of months (later this year ) to complete the thesis component of my Masters degree.
Perhaps most shocking of all was being told by a spiritual practitioner, last weekend, that there is a voodoo curse on me.
To help remedy this spiritual situation I will be working with a shaman and reiki master. I also have plans to attend an upcoming 3-day spiritual healing retreat.
*If you are a follower of my private empath blog, please know I will update it soon. I have been posting all blog updates from my iPhone. My private posts are much longer and world be almost impossible to type with my iPhone alone. I will have the magic combination of both my computer and internet soon .
HOW I AM COPING
A lot of people I have worked with during my evacuation have apologized to me for delivering bad news or " killing dreams." Others have spoken to me about fear and uncertainty.
I appreciate the sympathy, but I do believe that everything happens for a reason. During my last eight months with the Peace Corps, I've learned to get comfortable with a MUCH higher threshold of uncertainty than I ever could have coped with effectively before. I've learned that sometimes it is necessary to live day-to-day and have faith that things will work out for the best.
It is true that am living in a period of extremely high uncertainty but I am much less fearful than you might imagine. I am relieved to have diagnoses and be on the path to restored health. :)
I want to send a special thanks to all the PCVs and Trainees who have contacted me to share your stories about PC-imposed uncertainty. It is nice to know I'm not alone.
Monday, February 24, 2014
Not knowing what your future holds can be a little disorienting... Or a lot disorienting! During the week, the fact that I'm sick and have little control over my future can't be escaped. It's hard to forget your situation when you are in the hospital talking to doctors.
During the weekends, however, things are different. At this point, I haven't been admitted to a hospital, I'm just dealing with appointments (sometimes as many as 3 a day). As such, my weekends are free to relax and forget that I have no idea what's coming (thank you doctors who work only M-F).
This weekend was wonderful. I got the the chance to spend an evening with some of my old friends (from Michigan Techs Pavlis Institute) who, having lived in Africa with me (in 2010) are more capable of understanding what I experienced in Benin than any of my other friends. (Indeed, we had previously struggled through malaria together in a village 10% the size of Sirarou).
Yesterday I did something I've thought I should do since I stepped off the plane here in the USA, meet with an intuitive Reiki healer. Reiki is a form of energetic healing that has been shown to improve various conditions of the nervous system and body (google "reiki," for real). Although Reiki can normally cost up to $150 per session, there was a "psychic tour" not far from where I'm living offering healings and readings in bulk for about 10% of the normal costs.
I'll tell the long of the story in a forthcoming video, but suffice it to say I didn't even make it past the check in area before multiple psychics rushed me to a Reiki healer, who stopped everything (including a session with another person) when I walked up to her. And who, looked at me for about 10 seconds before she identified I had come from Benin and started giving me instructions about what to tell my Dr.!
One intensive reiki healing, 3 psychic readings, and one astrology session later (over 5 hours of spiritual work) I have a slightly better idea of what maladieS I am dealing with and what my future holds as well as what role Benin plays in my future.
Overall, it was a great weekend-- the first great weekend I've had in a very long time. For that, I am thankful!
Happy Monday everyone!
Thursday, February 20, 2014
This is the week, one year ago, that I recieved my Peace Corps invitation. I remember a distinct feeling, at the time, it was a feeling of relief, a feeling that the uncertainty was FINALLY over! Finally I knew where I would be living for those seminal 27 months of my life.
If you would have told me that exactly 1 year from that fateful day would be, quite acutely, the most uncertain time of my life, I would have found it difficult to believe you. Even now, as I live through it, I find it difficult to believe.
I remember times, in Benin, when I felt so sick that I would dream about U.S. Emergency rooms and doctors offices, so clean, comfortable, professional, and effective. After two weeks in these spaces I can say that those dreams were representative of the truth in many ways, but they left something important out!
There is something about that look in a Doctors eyes when you describe your symptoms and they are totally overwhelmed and baffled, that those original visions left out. Those looks comprise a turning point for anyone who has been waivering between thinking they are totally fine and thinking they are very sick.
I remember, after maybe 6 weeks in my village, asking my post mate how long she had ever gone in village without feeling notably ill. The answer, for her, was measured in days, not weeks. For me, it was measured in hours. I asked the question trying to gauge whether what I was experiencing was normal.
There is a lot of talk about illness between Volunteers and it is easy to convince yourself that either everyone or no one is seriously ill, depending on which side of the debate you enjoy the best. I got comfortable on both sides of the debate as I lived through moments of sickness and "health" trying to figure out what was happening.
Still, when the Doctor looked at me this week and said I should "stop thinking about the 45 day deadline" ( after which a Peace Corps Volunteer is 'medically seperated,' a term that essentially means Peace Corps stops both employing and insuring the Volunteer) it became clear to me which side of that debate was closest to " the truth" for me.
Up until that moment, I had never allowed myself to consider the possibility that I might not be going back to Benin!
When I left my village in mid-January, it was to go to the Peace Corps Benin Headquarters to discuss the possibility of following a passion and working in education. The doctors appointment I scheduled (in the same building) was just an afterthought after a particularly pronounced period of illness. I never thought, when I walked over to the medical floor of the Headquarters that, essentially, I would never leave...that I would be admitted for 25 days and eventually be sent here, to the U.S., for treatment!
My trip to Cotonou was intended to mark the start of a dream, not the end of one. When I look back on my life, many years in the future, I no longer know what that last moment in Sirarou will symbolize, a fresh start in my Peace Corps experience, or the unexpected end of my Peace Corps journey.
I started this blog with the intention to offer you an authentic, unadultered, unfiltered, peak into the life lived by one Peace Corps Volunteer in Benin. In some ways I've been successful, in other ways I have failed.
When it comes to telling the story of my health, I never even gave it a sincere effort. I've never wanted to worry anyone, and it has always been my intention to cultivate an uplifting online space. That is still my intention, yet authenticity spans many emotional spaces, some uplifting, some not.
I am not talking around a diagnosis. I don't have a diagnosis. I am working with one of the best research hospitals in the United States; the care I am receiving is absolutely magnificent, but it has only been 10 days, and no diagnosis has been made. This is a very uncertain time, hence the title of this post.
While my future is uncertain, my past is not. One thing is very certain: in the span of one year,I have gone from the healthiest period of my life to the least healthy period of my entire life. This isn't true for every Volunteer, but it is true for me: my Peace Corps experience is the worst thing that has ever happened to my health, physically, but also mentally and spiritually. In Peace Corps' defense, I knew this was a risk.
Trust me when I say I've told you all as much of this story as I "could" have and "should" have. I've sometimes told more, much at the dismay of Peace Corps administrators.
What I have chosen to leave out, I have left out mostly out of fear, not fear of you knowing, but fear of what Peace Corps would do to me if I shared it. I've been made to feel, in no small way, that I do not own my Peace Corps experience, that I am not the executor of my own life, that I don't own the screen play to my life's story.
This week I contacted my Program Manager (My Direct Boss) to see about any progress in my quest for a new site. I was told, 1 month ago that I would not be returning to Sirarou and I was given the chance to develop a list of new host organization partners, which I did thoughtfully and professionally on a very tight deadline. I found English4U, and four other excellent organizations, using what I know of Peace Corps host organization criteria. I did the research, developed the contacts, did everything I could do to make my boss' job as easy as signing on a dotted line.
Over one month later, no line has been signed. He responded simply that, "no suitable site has been found." That is it, impersonal, as if he was checking a box on a computer screen not speaking to a human being about hopes and dreams.
I can't say with certainty that the Peace Corps denied my request to serve as a Volunteer at English4U, they have never given me the peace of mind of informing me that the request was formally denied.
In over one month, despite many requests, Peace Corps has never told me anything except "be patient," "you will hear something soon," and "we haven't found a suitable site." I have never been informed exactly what they are doing to find me a site, whether they are using the list of organizations they asked me to develop, what their internal deadlines are, or if they even have any at all. I've offered to help, I've offered, quite enthusiastically, to literally do the job for my boss and his team. Yet, in 1 month, seemingly no progress has been made. I say "seemingly" because I've been kept totally in the dark about my future, which, I have learned, is a hallmark of the Peace Corps Benin experience, the most disempowering and unhealthy experience of my entire life.
So here I am, 1 year after receiving my invitation to serve in Benin, 8 months into my service, 11 days into my medical evacuation, and smack dab in the middle of the most uncertain period of my entire life. Not only do I not know if I will be medically cleared to return to Benin, I have no idea what is waiting for me in Benin if do return! Apparently, at this time there is "nothing suitable" for me in the whole country...how about that?
Little did I know, one year ago, that the uncertainty was not over, it was just beginning.
I wasn't sure whether I should write this post. I eventually chose to write it because I respect the people who read this enough not to keep them totally in the dark. I know how horrible it feels to be kept in the dark, and I will never intentionally make a human being feel that way again! If nothing else, my leadership will be greatly improved as a result of learning from, and living through, the weaknesses of the Peace Corps.
I apologize for the fact that this is not an uplifting post, but I assure you that it is an authentic post and I will do the best to provide you with the best representation of my lived-Peace-Corps-Experience, as it unfolds, and after.
From this moment of extreme uncertainty, thank you, once again for your support.
Sunday, February 16, 2014
One week ago, when I got on the plane to head home to the U.S., I was a little concerned about the (over) 100 degree temperature change that I would be experiencing!
I thought I would FREEZE and need a ton of extra blankets and multiple coats and pants when I arrived in the U.S.
I had spent many days (and nights) in Benin fantasizing about snow and I thought I might have one of those "grass is always greener " moments once I was finally experiencing winter in real life!
Luckily, I was wrong! Winter is amazing, more amazing then I ever imagined. The runs in the snow that I missed so much, they are better in real life than I imagined. And the "glitter snow" as I call it-- simply memorizing!
I feel so incredibly lucky to get to experience a bit of the winter season. Seasons are top 3 in the things I miss most while living in Benin, so this taste of winter has been a treat. If I am lucky, I might get a taste of Spring this week too. It is my favorite U.S. Season.