Getting Sick while Volunteering - a Saga solely about Me.

FINAL UPDATE AT BOTTOM OF POST - 10/31/14

A health Saga, starting late August, Explained on 9/5/14

So, I haven't said too much of it to too many people, primarily because I'm not sure what's going to end up happening, but also because the few people I have shared with have been supportive beyond measure. In which case, here's just a public update so that people know why I'm goofing off in Quito and not working in the lovely Chaguarpamba.

The first week into site, I began noticing that when I woke up in the mornings (or even at night), one or both of my arms would be numb. This became a daily occurrence, which I found strange and a little worrying, but didn't really pay attention to - it'd happened on and off during training, but stopped after I ignored it for a while. Once my legs started doing the same numb-after-sleep thing, I mentioned it to a fellow volunteer who is an RN - she (quite rightly) chastised me for not calling it in to our Doctors, so I went ahead and did so.

For a couple of weeks, I lugged myself into Loja to get Xrays done of my neck, and to work on some PT, but nothing really seemed to help the symptoms. The doctors were concerned about nerve damage and a lack of curvature in my spinal column, and eventually agreed that it would be best for me to be sent up to Quito.
Mind you, I wasn't keen on leaving my site at all, but the pain was getting out of control. I've always had a pretty high pain tolerance, but the location of the pain admittedly freaks me out, so we all decided that I should come to Quito for observation and treatment.

Upon arrival, a neurologist saw me and tried PT with muscle relaxers - this made the pain and symptoms much worse, so PT was discarded. Constant muscle cramping, electric-tingling, and occasional burning sensations throughout the body were added to the list of daily symptoms.
A few days after the first appointment in Quito, an MRI came back negative (which is good; that means no surgery), so they shipped me off to an internal medicine doctor. After another thorough exam, they weren't really able to come up with anything beyond the fact that my neck is becoming increasingly (outrageously) painful. All bloodwork appears normal, and my medical history doesn't seem to indicate any congenital conditions or interesting diseases picked up on my recent travels. So basically, after almost 6 weeks, we have a long list of things that are definitely not the problem. While I appreciate the scientific method, I'm grumpy about it using me as an example of negative-hypotheses.

Today, the information was passed back up to Washington D.C., to try and get some recommendations on treatment, tests, or advice on how to proceed. I have no idea what the next week holds in store, apart from more waiting around, reading novels, and drinking herbal tea. I have no real desire to stay in Quito (sorry kids - Loja girl for life!) or go back to the states, but at this point, I just want some resolution - after more than a month of this tomfoolery, I'm exhausted, grumpy, and just want some answers.

Along for the journey, my family and friends back home have been very sweet and supportive, even though I've been having a month-long gripe-fest.
My fellow volunteers (well, those in the know) have been magnificent, a couple of you checking in on me daily and spending your precious saldo - can't say how much I appreciate you.
And also Dr.s Serrano and Troya have been absolutely magnificent - the whole system of working with a governmental agency, and in a country where tests and exams proceed at a much slower pace than the states has been frustrating, but they've been patient with me every step of the way. Incredibly thorough and kind, I'm so very grateful to have the two of them looking out for me, even when their patient starts losing patience with the system.

SO - we'll see what life holds in store for me over the next week or two. Hopefully we'll be able to balance it out, fix it up, and pack me back down to site. Or, worst case scenario allowed, send me back to the states for resolution, and then get me back to site all healthy and ready to save the world.

Anywho, I have admittedly been very wrapped up in myself and the problems that have been accosting my family this past month - for anyone who I've neglected, or who feels that I've been distant lately, I apologize. I try not to let these things take over my life and my attention, but sometimes I don't succeed in that goal.

EDIT: The reason I've explained everything in such detail - when I tell people I'm in Quito for medical issues, everyone asks me about the symptoms, etc. Y'all are curious and very sweet to be so, but I just don't want to explain it a dozen times.

UPDATE as of Wednesday, 9/17/14

Hey Guys,

So, as my status declares, the decision has been made to Medically Evacuate me from Ecuador for the moment to try and figure out what is going on. Basically, this is no reason to panic. Please stop doing so.

This is not what I want to see:http://rack.0.mshcdn.com/media/ZgkyMDEzLzA2LzE4LzdjL0JlYWtlci4zOWJhOC5naWYKcAl0aHVtYgkxMjAweDk2MDA-/4a93e3c4/4a4/Beaker.gif

What it boils down to is that, after over a month of rigorous testing and coming at this problem from a lot of different angles in Ecuador, myself, our in-country medical team, and the international medical office have decided that it'll be better for me and for them to have me living at home and to have doctors here evaluate me to try and figure out what's going on with my back. I landed in the USA today (Weds 9.17) and am currently at home. My full time job at the moment is to go to doctors, get tested for stuff, and to figure out what's going on. Currently, a lot of the symptoms I've been experiencing are calming down to a manageable level, apart from the consistent and increasing pain in my back, head and neck. Whatever the cause, this is an opportunity to just step back, take a deep breath, and go at this with everything we've got, while having my family around to support me and help me through it. I'm disappointed to not be at my site and working on projects and doing what I set out to do, but this is a good chance for us to get this sorted and to not interfere with my future service.
I have no idea what my timeline is - I could be here for a week, or I could be here for the full 45-day medical leave - it all depends on what sort of alien the doctors determine I have growing on my spine. When I know more, I'll try to update you - for now, we're just assuming that most of my time will be spent at doctors getting poked, prodded, scanned, dissected, tested, and evaluated.

You are all awesome and very kind to keep up with me and to keep asking - if you have questions, I'll do my best to answer them, but a lot of my life right now is in the limbo of 'We don't know' - when I do, I'll certainly update y'all (probably here). This certainly might throw a monkey wrench in my plans for the next two years, but that's not something I know for sure yet. What I do know is that I'm getting really good care, amazing support, and a chance to hug my family. That's what matters 

UPDATE as of Wednesday, 10/8/14

OK, well, it's been a weird couple of weeks.

Two Thursdays ago, I underwent a Lumbar Puncture to rule out MS - every doctor I've talked to over the past two months has bandied that potential diagnosis about, so it's been a wee bit stressful. After having to go back in to patch up after the procedure (look up "blood patch" in association with lumbar puncture - it's not fun), I waited two weeks to find out that the results are NEGATIVE. YES - we have ruled out MS. Thank God. I've had that on my mind for too long, and I'm so relieved to not worry about that one any more.

Of the other tests that are running, a bunch of rule outs are still in process. The first and only thing that's been found to be out of whack on my bloodwork (after 2+L being taken over the past two months) is that I had a virtually non-existent level of B12, which likely is the reason for plaque buildup in my brain. That artifact is what had all of my doctors getting excitable about MS. We don't know *why* my B12 levels are so crappy, but that means that I'm taking injectable B12 on a regular basis, trying to get my levels back to a range that my doctor considers "compatible with life." That process might take a while, but we're just chugging along and pursuing other avenues in the meantime. They don't think that this is the cause for the other symptoms that have been joining in the Melinda-Party, but no one knows.

I'm going to be visiting with a Rheumatologist on Friday 10/10 for more examination, poking, prodding, and probably bloodwork. So, things continue to move VERY slowly, we continue to figure out what ISN'T wrong with me. Baby steps. Today marks the halfway point in my MedEvac period - if we cannot figure out what's going on by Oct 30, I'll be medically separated (which basically means honorably discharged from PC for health issues). At that point, it'd depend on diagnoses, prognoses, and a whole lot of other "oses" before we can determine whether I'll be able to try and reinstate (ie return to my job/site) within a reasonable amount of time, or if my PC journey will be over.

So - that's where we are. I can't tell anyone what my plans are, where I'll be in two weeks, or what I want to happen. All I know is I want to figure this out - beyond that, every other aspect of planning has to be put on hold.

UPDATE as of Friday 10/31/14

Well, here we are. The end of my grace period for MedEvac, and only a few steps closer to finding answers.

Since I last updated, I've been in to see several doctors and specialists, all of whom have come up with a lot of negative diagnoses, but nothing to explain why my B12 has been low or why I am having the other symptoms. We've eliminated pretty much any immune-system disease, a whole host of neurological diseases, and physical abnormalities.

Because no one really has any idea of how to progress now, I'm going to see an Infectious Diseases specialist next week just to eliminate the possibility of any guests that have journeyed home with me.

In the meantime, the gameplan of the powers that be is to have me on a host of oral vitamins and supplements, as well as B12 injections pretty frequently to try and normalize my levels.

For whatever reason, my system isn't absorbing B12, which has led to a decline in my nervous system - basically, if you have low enough B12 for long enough, your nervous system starts shutting down, and leave it long enough, it'll shut down permanently. Apparently, it was starting to paralyze me, which is both cool and horrifying. I was also told that my B12 bottomed out harder and faster than the neurologist usually sees, so we don't know how much damage has been done. Thus far, taking B12 a lot seems to have addressed a lot of the neuropathy that I've been experiencing, but headaches, neckaches, and weakness are still pretty severe. The gameplan is to have me on B12 for 6 months before a full workup (bloodwork, potentially another MRI, etc), and then another exam at the 1-year mark (early September 2015). At that point, if my body seems to be back to normal, they may experiment to see if we can try me on oral B12 tablets, but the neurologist doesn't like the idea, as another bad dip in the B12 could do some gnarly damage to me. B12 for life, kids!

All in all, I was complaining about symptoms, but not willing to actually do anything about it until Shelley made me, so thank you dear - apparently another month and there would have been more serious issues.

So where does that leave my work life?

Upon discussion with the health coordination office in Washington, we all agreed that at this juncture, I'm not able to go back to my site. I'd be remote enough that any complication could spell disaster - that and carrying my bags isn't really in the cards for me at the moment. 

So, I'm being medically separated (ie, honorably discharged) from the PeaceCorps starting today. 

I will have the option to apply for reinstatement over the next year, if I feel that everything is back to normal and the doctors give me the all-clear. Right now, because of rechecks required and medicine administration methods, there's not a great chance that I'll make it back down to Chaguarpamba. It's heartbreaking to see all of the effort on my part and the support your part to get me down there seemingly be wasted - at the same time, I'm choosing to follow the advice of so many wise men and women - I can always reapply to PeaceCorps, but I can't get a new body. So let's try and sort this out while I've got time.

UPDATE as of Wednesday, 12/3/14

So, the saga continues (albeit with less oversight from PC and less excitement on my end). I finally convinced them to let me go and see an infectious diseases doctor. Basically, these folks are the ones who identify bugs picked up during travel, communicable diseases, zoonotic diseases, etc. One would think, given my habits over the past year, that a visit to one of these guys early on would have been warranted - anywho, after months, I finally got my way and went to see someone here.

The doc ran a bunch more tests and cultures, and after a couple of weeks got a partial positive back on Brucellosis.

Now, it's easiest for you to just google this and go with the Wikipedia article. There are all sorts of interesting names associated with it, and some pretty harrowing long-term consequences. The issue with Brucellosis is that it's annoying to diagnose. Super, SUPER  hard to diagnose - they almost never are able to catch it until the host has been infected for a really long time, and basically has irreversible, and often fatal, symptoms. And even at that point, not all of the tests will come back positive - there simply isn't a lot of knowledge about diagnosing the disease. A good and more certain way of running diagnosis is to do a bone marrow culture - I'd love to avoid that, and he doesn't want to do it right now, so it's off the table for the moment.

Anywho, I have several of the markers, and one of the two blood tests that signifies me as having it is positive, so that's the running diagnosis. They've got me on a three month treatment (already started it a couple of weeks ago), and we'll be revisiting for bloodwork once a month until such time as I'm released from taking 10+ pills per day. It's probable that I got it from my exposure to livestock while I was down south - the last time I was treating a canine patient for this was too long ago for it to have been the cause for my illness this go-around.

Once you've been freaked out by the potential consequences of this disease on Wikipedia, our current theory is that it's in early stages, and thus can be terminated with the correct combination of antibiotics. We'll be revisiting that and checking in on it later on during treatment, but for now, this could be good news. DOESN'T explain the B12 deficiency at all (annoying..), but he's not as worried about that at the moment.

For now, after just two weeks I'm feeling more like a person again, with energy and a memory, and all of that amazing stuff. Exciting.

So, we'll see how this goes and where this leads. For now, I'm starting a contracting job (and doing any house/pet sitting jobs that folks would like me to do) and will be hopefully moving into an apartment at the beginning of January. A long and unexpected road this has been, but we'll get to a healthier stage of it eventually. What I can say for sure: It isn't/wasn't all in my head. And the fear that I was just going insane was a very real fear of mine, so that's an amazing relief.

Fun Fact of the Day: Brucellosis is a disease that I studied pretty intensely in my Biological Warfare Course, because it's been developed as a Bioweapon. YEAH.

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To those of you who fought hard for me to work up the courage to dive into the PeaceCorps - Thank You.

To those of you who showed such incredible support and generosity on my way down, and once I was already there - Thank You.

To those of you who have supported me throughout the process, whether by praying, offering advice, or just listening to me gripe - Thank You.

As someone who's always considered herself pretty much invincible and hardy, it took me giving up my pride to admit that maybe I can't do this yet. It stings pretty fiercely, but life will teach us lessons and give us silver linings in every situation. Luckily, I am blessed more than many with friends and family to help me through this, so I know I'll get back into fighting form before long. The biggest silver lining is that I will be able to be here for my dad's open heart surgery in November, which was a huge concern of mine.

So, while I search for jobs and an apartment to tide me over while I figure out what the future will be looking like here, it's time to spend with people I love and to keep on growing and learning, even if it's not in Ecuador.

Thank you, PCVs, for being an amazing set of people to get me through training and the first little bit of time I had at site. I miss you loads, and am already planning on getting back into fighting form to rejoin you, or at the very least visit you.