The Last Chapter

Five years later and it is finally a new chapter....

I am generally very aware of dates that hold meaning for me, which is why I felt the need to blog one last time about my time post-Peace Corps.

Exactly five years ago my horrible headaches started in Newala. I had no idea that the headaches were the beginning of a five year journey that would test me physically, mentally, and emotionally.

I'm not the type of person who would call in sick or who would complain about little issues. I wrestled, played water polo, and was a gymnast amongst other things. Pain didn't scare me. Scrapes, bruises, and black eyes were normal. Honestly before the Peace Corps I really only remember being sick a handful of times-the stomach flu in 3rd grade, two weeks of a bad flu in 7th grade, and strep throat in college.

On the morning of February 13, 2013 I called Dr. S because of my headache for two reasons: One, it was the worst headache I had had in my life and it was originating from my eyes. Two, we had been instructed at the first sign of a headache to alert medical staff since it might be malaria. As a typical American, I was terrified of malaria. Ironically, malaria would most likely have been an easier illness to overcome.

I honestly can't even remember all the potentials they tested me for, but after about four months we (doctors in TZ, doctors in South Africa, doctors in Washington D.C., doctors in Modesto, family, friends, etc.) came to some conclusions. I had viral hepatitis, Giardia, and some viral illness.

I vividly remember Dr. S accusing me of being an alcoholic because I had hepatitis. I was so shocked that this was his assumption, as I hadn't even drank alcohol for a month because my stomach hurt so much. We ultimately concluded this was either drug-induced hepatitis (from the doxycycline used as a malaria prophylaxis) or viral hepatitis spurred from a yet to be determined viral infection. After all the "normal" viral tests came back negative, they decided it might be meningitis. By the time they did a lumbar puncture to test for meningitis it had already been 2.5 months since the onset of symptoms so the negative test left me wishing for more answers. If they had tested me sooner would I have been positive? Was the viral meningitis what caused the viral hepatitis? Back in America, I was also diagnosed with Giardia (assumed onset of August 2012) and continued to have stomach issues until late last year, which we just assumed was post-infection IBS.

My initial road to recovery lasted from February to June 2013. My general feeling from 20+ doctors I saw was that I was making the symptoms up, that this was my escape route from the Peace Corps. I looked well enough and for the most part, all of my tests were within the normal range. The symptoms were sporadic and ever changing. I would have pretty good days and other days be stuck in bed sleeping for 20 hours. My vision was blurry and almost black sometimes, it felt like I was being stabbed in the eyeballs with an ice pick, and my whole body was tired. Not to mention the stomach pains and constant diarrhea which I basically ignored because I couldn't spare the energy to focus on that too. My mom accompanied me to my doctors' visits and inevitably they would look at her and say "Mom what do you think?" She would rattle off our current assumptions but always end with "I believe her. Something is definitely not right."

I felt like I had let my students down, let my teachers down, let my fellow volunteers down, let my neighbors down, but most of all let myself down. I didn't want to leave Tanzania and I definitely didn't want to be bed-ridden in California.

I broke my wrist in January 2014. I had never broken a bone before. I cried happy tears a few days after the surgery because I had tangible pain. No one could discredit me. It was very obvious that it was broken and there should be pain associated with it.

Fast forward from July 2013 to January 2016...I kept having diarrhea, cramping, bloating, and just an uncomfortable stomach. I never knew what foods would cause me to react and I basically stopped drinking alcohol to avoid any other complications. I had been seeing Dr. B in Vallejo for about a year and had casually mentioned my stomach issues in my previous visits. Every time it was the same story. "Well women tend to carry stress in their stomachs. My ex-wife sure did! Are you stressed about anything?"

To be honest I was stressed about a lot! I had just turned 24. I had just graduated from grad school. I had moved in with my boyfriend. I had landed my first "real" job a few months prior. We adopted a dog. I had just bought my first car. And to top it all off I was having a lot of pain in my lower back that felt like it was somehow connecting to my stomach pain. (Turns out I also have severe arthritis in my lower two vertebrae!)

I had some weird dizzy spells and I was getting headaches again. I felt so nauseous I didn't want to move. I was wondering if the dizziness and stomach pains were still somehow related to my mysterious illness in TZ. I started asking Dr. B questions about what it could possibly be. Do you want to know his response?! He told me to go to a psychiatrist because I was obviously giving myself anxiety over my health. I fired him and never went back.

Those dizzy spells and nausea came and went on intermittently for the next year and a half. I tried to dismiss it that these were "normal". Everyone feels like this sometimes, right?

Fast forward again to October 2017. I had moved to Hawaii in July and was loving it so far! My boyfriend was traveling a lot for work, as was I. Our dog, Jack, had arrived in September and there were some issues with the roommates' dogs which made settling in a little difficult. Other than that, I was really enjoying Hawaii! That is, until I started throwing up and feeling nauseous every day. It started out one morning and I attributed it to food poisoning. I bounced back from it, went rock climbing that day, and overall just felt a little drained...until it hit me again the next day. This went on for about a week and then it just turned into non-stop intense nausea. I once again felt helpless and didn't know what to attribute this to.

Long story short, my symptoms persisted for about six weeks before I tested positive for H. Pylori and was given two weeks' worth of antibiotics. H. Pylori is a bacteria which can cause stomach ulcers. It is very possible that I had H. Pylori from TZ. False negatives are very common when trying to detect H. Pylori. This also could explain my bouts of nausea and dizziness! I felt so much better on the third day of taking the antibiotics and couldn't wait to resume my normal life after! So far my stomach is back to normal :)

I had seen a dermatologist right after being diagnosed with H. Pylori and she prescribed me low-dose minocycline for acne. She told me to start taking it as soon as I finished my other antibiotics. The very first day I took it I broke out in a weird rash and I immediately felt worse. My energy dropped and I was even more sluggish that when I had a stomach ulcer! We were also in the midst of moving into a new house so I just figured I was just processing everything. Mike started getting irritated with my clumsiness. I was running into walls and tipping over just while standing up. My brain felt really foggy at work and I started having some blurry vision. It wasn't until after the New Year that I started to get headaches almost every day. They weren't as bad as the ones from TZ but it was a familiar feeling in the place of origin and type of pain.

Thankfully I had a follow up with a GI specialist on January 15th. I mentioned my fatigue, the rash, and headaches to her. I laughed and said it was ironic I felt worse now without a stomach ulcer than I did before! She agreed and thought I might have post-infection lupus. Lupus seemed like such a scary thing so I started doing research online. My research on lupus led me to Intercranial Hypertension.

I guess I will never know 100% but deep down I am fairly certain I have Secondary Intercranial Hypertension. It is an invisible illness.

It seems I have a very rare reaction to "cycline" antibiotics, which causes the pressure of my cerebrospinal fluid to get too high. My symptoms basically ceased within days of stopping minocycline. From what little research which has been done it looks like I may have very slight lingering symptoms or even no symptoms at all! Thankfully I can just avoid "cycline" antibiotics from here on out. I am hoping this is the final answer, but I guess time will tell.

Just a few days after discovering this diagnosis, a fellow PCV wrote a blog post about her time in TZ. She is so beautifully articulate and captures the essence of her Peace Corps experience exquisitely. Her post allowed me to reflect on both good and bad experiences I had.

With all of the technology we have today, it baffles me that this took five years to figure out.  I feel validated that there are other people out there just like me. I feel like I finally have answers. And most of all, I feel like I finally have control over my body again.

Through this journey I have cried a lot. It is eerie to be a prisoner within your own body. I have looked beyond Western medicine because I felt dismissed and judged by most doctors. I have gained a greater understanding of the power of yoga, massage, acupuncture, chiropractic, food as medicine, and aromatherapy. But most of all I have gained a greater understanding of myself.