Like I mentioned, this past week was the longest I have been away from the blog— ever. And if it weren’t for the posts I had scheduled the previous week, it would have been two weeks away. I’ve been saying I’ve had something going on but I wasn’t sure what. All I knew was that my blood work kept coming out “perfect. perfect. perfect.” but something wasn’t right.
Well it turns out there was a few things going on. Nothing particularly health related—- mostly a lot of cause and effect type situations and complete unexpected finds. I do urge you to read through this— even if you’re not sick and in need of antibiotics and even if you’re as healthy as can be (like I was).
Okay, So I’ve started and re-started this post ten million times (slight exaggeration). It’s just that each day is so different. Sometimes I’m getting better, sometimes it seems like I’m getting worse, and some days I’m getting calls from the CDC that they did in fact find Dengue antibodies in blood— confirming that this month has been one incredible shit show. You know though, the main thing I want to talk about it just antibiotic use– I mean, sure we all hear warnings and things like that, but it’s pretty surprising to me how little doctors will actually say about the serious side effects and consequences— at least the doctors I’ve dealt with.
You know, I’m not against modern medicine or western medicine. I’ve taken ibuprofen for headaches and wrist aches. I got some extra shots before heading to india. And I’ve taken antibiotics and other meds before. But I do try to stick to the more natural side as much as I possibly can. It’s been a long while since I’ve taken an antibiotic. And with the exception of my wisdom teeth removal, it’s been a long time since I’ve taken anything other than advil for… well, anything. I’ve given Alex a lot of flack in the past two years for taking (my own personal opinion here) too many antibiotics. It’s been a long time since he has, but over and over again I would tell him it wasn’t a good idea to do it. And yet, I found myself in a position, saying “better safe than sorry” taking the antibiotics, and ending up with a deadly superbug in my gut. I feel a lot of frustration over the whole thing. I’m having a hard time understanding why these things aren’t more well known. I mean, and even for myself, who’s dealt with candida issues in the past (thanks to– you guessed it, an antibiotic)– I really had no idea what the reality of c.diff could be.
C.diff kills 15,000-20,000+ people a year. At a minimum. Yes, it’s true that many of the people who die from it had previous complications or are in nursing homes— but thats not the only people who die from it— and even if it was, thats NOT OKAY. And the reason for c. diff? Most of the time? antibiotic use. The cure for c. diff? More antibiotics. And even then, there is a 20% return rate. I’m frustrated. I’m frustrated for myself in taking the first antibiotic in the first place. And I’m frustrated that the isn’t a bigger focus and warning of this bacteria.
So do antibiotics create C. diff? No. C. diff. spreads easily. Spores break lose and sometimes– in one way or another end up in your gut. I had c. diff in my gut. There’s a good chance YOU have c. diff in your gut. And that was all fine and dandy, because I am (or was) a healthy person, with a healthy gut. All my good bacteria (flora) kept the c. diff in check I take probiotics, eat fermented food, keep my sugar intake to a minimum, and keep my vegetable in take very high— I was good. Until I took an antibiotic. And BOOM, all good flora in my gut was killed off and the c. diff took over. And just like that, you’re stuck. I’m stuck. I feel like I’m fighting an uphill battle trying to regain a months worth of malnourishment, dehydration, and whatever else. Do I still have c. diff? Yep. I’m fighting it. I’m fighting this deadly bug away, fighting what seems to be the remains of a viral infection, fighting my own anxiety and fear, and fighting to get my vitality back.
I was weeks out with the c. diff. I lost ten pounds. I now suffer from tremendously low blood pressure. I shake when I eat. I would have probably died had one doctor not finally admitted me and given me the proper stool test. That is real. I’m in an okay place now, but it got bad. Really bad. I’m cringing thinking about it. And I’m nauseous of the thought of it ever coming back. Because it could— and hell, it hasn’t even left yet. How do you know if you have c. diff in your gut? You really don’t, so whatever you do, proceed with unlimited caution when it comes to antibiotics.
So what else is new? Well, like I said, A Dengue confirmation. Yes, really. C. diff and Dengue. Where did I pick up Dengue? Who knows. A mosquito in India? Maybe. But the reality is, I was hardly bit there, and the mosquitos found me since coming home— at least 15 new bites in my own home in one week. Anywhere is likely. What else? It’s been a shitty month guys. No pity parties here, but it’s been shitty. The doctors also found a lump in my brain. What is it? Honestly, I don’t know yet. Hopefully nothing. Hopefully another lump to add to my cystic collection (I have them in my ovaries, one in my kidney, one the size of a golf ball moved from my breast, I have lots of lumpy friends in me). Hopefully something that doesn’t grow any more than it should. Could be anything, but in my head, the doctors are right about this one, when you look for something, a whole lot of other things will come up. This came up. I do plan to follow up in the next month— once my overall health is better. But for now, the joke my mom keeps telling people, is that I should play the lotto— because really, what are the chances of all of this?
Oh how fast things can change in one month. I’ve grown more fearful and fearless in the process. Countless moments of sheer horrific panic. And countless moments of feeling this need to embrace life and just run— run as fast as I can– everywhere. I don’t have the energy now, but I will and I don’t want to hold back. Life is short. And life is stupid amounts of fragile. Cheesy yes, but there is absolutely zero promise of tomorrow— or one hour– or even one minute. We’re here right now. That’s the only guarantee we have. We’ve gotta love every crazy minute and make every single moment worth it.
Thanks for being here guys– for being part of this crazy, whirlwind life.
I’ve made a timeline of this past crazy month— mostly for my own records, but absolutely to share too, in case you were curious of how this all came together (or fell apart– depending on how you look at it). I feel like I should keep pressing on how serious antibiotics are and the deadly things that can come from taking drugs that are too easily handed out— but I won’t. But do do do please second and triple guess everything you put in your body. You’ve only got one body, and you’re the only one responsible for it, so do all the research and fight for it.
So lets start over a month ago.
The week of March 11th, I return home from two weeks in india, happy healthy, no concerns whatsoever– other than the lingering (and growing) pain in left arm (my dominant arm) from my previous carpal tunnel. I take the week to get over jet lag, catch up on family time, and work.
Around this time, I’m sitting at my desk late at night and picking at my finger— this is nothing new. I’ve picked at myself since I was in 4th grade. A finger gets irritated. As time goes on it gets more red and blistered. I’m not sure if it’s infected or not— but maybe.
March 24th. Marlowe and I have plans to head to Miami. My finger is not looking so great still and my wrist pain is creeping into my arm even more. I think “better safe than sorry” and I head to an Urgent Clinic office to see if it is something I should worry about. They prescribe an antibiotic. I go home and read through the labels— like I’ve taught myself to carefully do. And I see that it recommends not to take if you’re allergic to penicillin (I am). I was already on the fence about taking it— since in general, I try to stay away from antibiotics as much as possible. I’m annoyed. I call office and explain that its in my chart that I’m allergic to penicillin and ask for a change. They call in Cleocin (Clindamycin) into the pharmacy. I pick it up on my way to Miami. I read over label and debate for an hour. Side effects like diarrhea that can happen days, weeks, months later? Crap. I don’t know. But again, I think “better safe than sorry.” I take the antibiotic as directed. We spend the rest of the few days having fun in Miami, at the beach, hanging out, at farms, petting goats, all the good things.
The night of March 26th, we drive home. My arm pain is still increasing. I lose feeling in my arms when I hold the wheel, especially my left arm. I’m still on antibiotics. The week continues this way.
March 31st, the pain has spread to both my arms a I feel weak. I lose feeling (other than pain) constantly in my arms. It hurts almost all the time. My sister in law goes into labor. By 4pm, I’m happily on the way to the hospital to celebrate the birth of my new new niece. I hold her carefully and try not to focus on the pain in my hands and arms. I’m shaking. I feel week all over. As I go to drive home I think, I should probably turn around and see if I can get help. It no longer feels like carpal tunnel, but I know the pain had been in my wrist for months.
April 2st. I am done with the antibiotic. I head to the hand-doctor for an exam. He says we can work on the main pain in my hand that I’ve had for months. He x-rays my hand and see no bone problems. He offers a cortisone shot. I agree. I have pain from the shot but my hand begins to feel better. I hear the news of my cookbook, I want to celebrate. I go out to dinner and drinks with friends. I start showing off how easily I can move my hand without pain. No pain.
April 4th. I wake up and feel weak once again. I’m shaking as I drive north to pick up Marlowe. I want to climb in bed. The pain has officially moved everywhere. All my joints and muscles hurt. I have no signs of cough, cold, sore throat, anything, but the joint and muscle pain is everywhere.
April 5th. Easter morning. I wake up. Diarrhea. Over and over again. The joint pain comes and goes. The diarrhea is persistent.
April 7th. I follow up with another hand doctor. I tell him my pain has moved from my hands and wrists to my entire body. He suggests I should have a nerve study done. At this point I’m still using the bathroom 15+ a day. My shaking and crying is uncontrollable at this point. My entire body is bent over backwards in pain. The diarrhea continues. The pain has moved into my head and neck. I worry. I can hardly stand. I have Alex drive me to the ER. I tell them my concerns. Outrageous amounts of bowel movements. Pain throughout my entire body. A low grade fever. Chills. I tell them, I went to India, I fear listeria or another stomach bug. I tell them I was on an antibiotic. The name begins with a “C” but I don’t remember what. They offer me an IV and morphine—this does ease pain, but I know it’s a bandaid to a serious issue. We request a stool sample. They say no. They offer me anti-diarrheal medicine and nausea medicine. I tell them, what about my shaking, my pain? They have no answers. They say my blood work is perfect. And send me home and tell me to follow up for a possible auto-immune disease. I know that this is not okay. I know that there is something in my stomach and an anti-diarrheal is a death wish. Whatever is in my stomach needs to come out. Looking back now I am so grateful to have known better. The anti-diarrheal would have made things significantly worse.
April 8th. The shaking and crying continues. I go to the chiropractor so he can look me over. I receive no treatments yet. He agrees many of my symptoms mimic an auto-immune disorder.
April 9th. I head to the primary care doctor. I tell her my story. She runs blood work. Wants to check my levels. Says she wants to have some more tests done. I go home and almost pass out. At this point the chiropractor has gone over my tests and I follow up with him. My joint pain is slowly starting to go away— I still feel terrible, the diarrhea continues, but I’m walking almost upright.
April 10th – 15th. I spend the rest of the week with on an off joint pains but feeling terribly weak. From time to time I sit up and I lose all the color in my face and feel like I’ve been put in a bubble to pass out in. Dropping blood pressure. The diarrhea continues. Sometime in here I receive back results from basic blood work “perfect” — I know. Sugar levels “good”— I seem to be in great health according to everyone, but I know I’m not. We make a phone call to the CDC to inquire about chikungunya. A small stretch— but I have all the symptoms, exactly. Possible to obtain in India, but also here in the states. The CDC hears my story and becomes increasingly interested in my case. They are helpful, they give information and calls me into the health department for more tests. They also believe I could have a possibly case of chikungunya from a mosquito. They test me for Dengue too— just because. And they tell me they will follow back up with the results, but it would take a while.
April 16th. I have a brain MRI in the morning. “With and without contrast.” I finish half of it and panic when it comes to the contrast. I head home, feeling defeated. Feeling weak. Feeling like I’m going to pass out. An hour later, my doctor calls and tell me she has results and to come in. I assume results for b12 blood works and lyme disease tests. She tells me I don’t have MS (I figured I didn’t), but there was an incidental finding in my MRI. A 1.6 centimeter lump in my head. She tells me it could be a few things, and to follow up with contrast so that they can have more clear results and to see if it grows. An hour after being home, I start shaking. I feel terrible. My blood pressure keep dropping and I can hardly stand. This continues the rest of the day and evening. At dinner and three times after. Whatever it is thats causing it, is not getting better. I cry and say I need to go back to the ER. My mother takes me. We are there from 10 pm until 4 am until they finally admit me into a room. Blood work keeps coming back clear. HIV, no. Hep A, no. Rheumatoid factor, no. The doctors decide to start me on Flagyl. For parasites and for C. diff. just in case. They think it’s likely.
April 18th. I am woken up at 5 am and moved into a rom across the hall, a room by myself. A few hours later, the infectious doctor comes in and tells me everything has come back as a NO— until finally, a yes: C. difficile. Contagious. I’m in a caution room. I continue on Flagyl “first line of action.” I continue on IV for my extreme dehydration. The attending doctor would like to send me home. The infectious disease doctor disagrees. He comes in an explains the main cause of death is often dehydration. I’m two weeks out (almost three at this point) with diarrhea. I’ve been completely malnourished, dehydrated, my blood pressure is dropping. He says I will stay until I have three or less bowel movements a day. And I stay. At this point, I have developed permanent ringing in my ears and popping as well. I have constant blurred vision. I can hardly function. Every time I go to eat, I shake. I feel like I will pass out. I twitch. I feel crazy. Really crazy. I tell the doctors over and over, “my brain does not feel right.”
Aril 21st. The shaking, everything has continued. My diarrhea seems to be lessoning, but also seemingly due to the fact that I am unable to eat. I feel nauseous all the time. I feel awful, most of the time, with a few moments of sanity where I feel like I can sit and talk– almost like a normal person. But I am ready to go home. I don’t feel safe in the hospital anymore. And I’m ready to go.
April 22nd. At home, things get worse. Without an IV, I am struggling. The shaking is uncontrollable. I feel insane. And I repeat it over and over and feel as if no one is listening to me. I take another dose of Flagyl, and I cannot speak. I lay in bed, shaking. I am scared. I fear that I will never feel normal again. We call for a drug change. Only two options for c. diff. Flagyl or Vancomycin. I make the switch. I have a mild panic attack in the process. Alex holds my hand and tells me I’m fine, over and over again he repeats it, but I cannot stop shaking knowing I am putting another unknown drug into my body. 20 minutes go by, and I see he is right. It was my fear, not the drug. I am okay. And I ask to go for a walk. I wake up to throw up in the middle of the night, but the next day I feel okay. The vancomycin works directly in my gut and doesn’t go into my blood stream. The side effects, for me, are a sometimes nauseous feeling, otherwise I am fine— and hoping to get better.
So before I end this incredibly long post, I want to mention, again, caution with antibiotics. But also, as I mentioned on instagram, if you know something is wrong, do not take no for an answers. If I had been admitted int the hospital the first time around, I would be in a MUCH MUCH better place right now. Sure, it still would have been hard, but I wouldn’t have hit the level of malnourishment and dehydration and I had hit. I wouldn’t have to be working so damn hard to feel “almost normal.” The hospital experience I had was horrific from moment in to out. Some nurses were kind. But there was very little done to actually listen and access personal needs. It didn’t matter if I was a 300 pound man or a 100 pound girl— everything was protocol without real thought. One doctor stood by my side and said that I was far behind in the healing process, I was in the deep of it for too long. Without the one doctor, I’m not sure how I would be today. I’m lucky to have had not only the one doctor, but also my family by my side to advocate for me. Not everyone is so lucky. So please, please, please, if you know something is wrong, ask for help and fight for yourself. One life. One body. This should have been handled the first time. It wasn’t, but I’m sure as hell going to fight to make sure I’m okay now.
And now, here I am— days later. Ups and downs. Sometimes I still feel like I might pass out when I eat. Sometimes I feel like my brain is half on. Occasional chest pains. A ringing that keeps me awake at night. But I’m okay. On the mend. Frustrated, but seemingly on the mend. My gut is still struggling and I only have a few short days left of the antibiotic and I know the c. diff is still in my gut– my I’m hopeful. My diet now is limited. Incredibly limited. Some cooked vegetables, better purred. Purred black beans. Black rice. And thats basically it. I’ll be sugar and gluten free for a long time. No fruits. No roughage. No white starches. No alcohol of course. No soy. No tomatoes. And of course, still being vegan. Very very limited. I’ve upped my probiotics– even though I know the vancomycin is killing them. I am now deficient in iron, vitamin d, minerals, amino acids, and probably many other things. I got the call today confirming the Dengue. Sort of unbelievable. But I’m patiently working on and waiting on feeling better. And maybe my mom is right, maybe I should play the lottery– because really, what are the chances?
On my to do list: lots of probiotics and even more soul medicine— hoping for some sun, lots of laughs, and great company. Three of the girls from our India trip are arriving as I type (it’s wednesday night)— they’ve promised me lots of dancing for my soul-filling therapy. I am grateful.
I hope you all have a wonderful week friends. Thanks for being such a great support system.
Don’t take antibiotics, eat good food, wear some bug spray 😉
UPDATE Sept. 28th: still fighting to get better— 6-7 months after becoming ill. They’ve put me in a “post infectious c diff box” its quite silly. Basically, they confirmed I had c diff, are pretty sure I had some sort of viral mosquito thing, and have absolutely zero advice for all the lingering symptoms. I’ve developed a few allergies, I have random fevers, and get tremendously dizzy and off from time to time, but I’m getting better. It’s truly crazy how long I’ve been sick.