toxic shock is real

On February 20th, 2013 (3 years ago today) I woke in the middle of the night with severe flu like symptoms and vertigo.  I remember barely being able to walk to the bathroom without falling over (I am pretty sure I crawled there).   I was sure it was just the flu and spent the entire day in bed barely able to move while my husband cared for the kids.  A few hours into the second day I noticed that half of my abdomen was bright red, and looked as though I had a bad sunburn.  I decided I needed to go see the doctor.

My doctor wasn’t able to figure out what was wrong with me and of course while I was there my fever had dropped from 102 to 99.8.  The doctor said I was likely having an allergic reaction on top of the flu and that I should take Benadryl and go home to sleep off the flu, with a side note that if my fever spiked back up over 102 to go to the ER.  I went home feeling satisfied that my flaming red abdomen was unrelated to all the other horrible symptoms.  So we went home and I settled down on my couch with some bad TV, and a blanket. I decided I needed some peace in the house and sent my husband out to dinner with our boys.

I began to notice a pattern and that my fever was almost cyclic, but not your usual down by morning and high at night, this seemed to be every hour or so it would cycle through the highs and lows.  I noticed that each time my fever spiked it was higher. That’s when it hit me and I knew some thing was really wrong.  It was this exact moment in time that will forever be crystal clear in my mind.  Following that moment of clarity I began to have trouble knowing reality from what seemed to be hallucinations.  I some how in my daze checked my fever again, it was over 103.  At the exact moment I needed him, my husband came home.  I looked at him and began to cry and pleaded that he get my dad to take me to the hospital right away.

From this point forward is a blur, through moments of consciousness when my fever ebbed and total confusion when it would spike up again. STILL despite being in the ER and being clearly very ill, the doctors could not figure out what was wrong with me. They ran tests, gave me medicines and nothing was giving them answers.  They wanted to send me home.

Lucky for me, my mom and husband refused to let them and only moments later I crashed. My blood pressure went below (85/55), and the message was clear, I needed medical attention right away.

I remember having trouble speaking and holding my head up, but I will never forget the face of the doctor, who saved my life. He took one look at me, the redness on my abdomen and my hands and feet (which were now also red) and knew right away that I had Toxic Shock Syndrome.  He new that I was headed for organ failure and if they didn’t get me into the ICU and treated with IV fluids and a heavy course of antibiotics, there was a good chance I wouldn’t live.

The next morning I woke to see my husband asleep in the chair next to me I felt like the luckiest girl ever. Despite the fact that my whole body was swollen and hurt from the fluids they had to pump into me (to trick my kidneys into functioning).

Shortly after my husband left to relieve my mom of our kids, I overheard a nurse talking outside my room, “how sad, she has two young children, I hope she makes it”.   At first I thought I might cry, I had never felt so alone and scared. Then my fear was replaced with rage.  I wanted to yell, “I don’t need your sympathy”! I decided against it since these were the people who likely were going to help me get out of this. So I went back to crying, but it did nothing but make it worse.  A few hours into my misery I decided that I didn’t believe her and that I get to decide my fate.  I had to believe in some thing and take control otherwise I would just lay there feeling sorry for myself and die. I needed to know what exactly I had to do to get better.  No joke, I found out what exactly my “stats” needed to be to be considered in the clear and I set daily goals for myself to get there.  7 days in the ICU, 10 gallons of fluids pumped through my body, 21 lbs of water weight gained and 5 kinds of IV antibiotics later I was okay to go home.

What’s the point of all of this… Well let me tell you, Toxic Shock is REAL.  I didn’t even significantly “misuse” a tampon (I know gross, I’m sorry). I slept in one for ONE night, that’s right ONE night, 8 hours total (that’s why 3 of the 4 doctors who saw me had no idea I had TSS because they didn’t consider that I misused a tampon enough to warrant TSS). I will never in my life use a tampon again and I will never use any sort of pad that isn’t made from organic cotton.  I firmly believe that we should actually heed those warning labels in the boxes and educate our daughters and sisters and friends.  Now the Diva cup is my monthly BFF. It took a little getting used to, but now I am a pro.

So my advice to you is to look into what your tampons and pads are actually made of, most of which don’t list the ingredients and are not made of cotton, but instead various plastics and chemicals.  If you feel there is no way you could even consider using some thing like a Diva cup, then look into only using organic cotton tampons and pads.  There are many great brands out there, you can even find them on Amazon.

My advice to you is to educate yourself and consider this; if you’re like me, you probably read the labels of your food. You likely try not to eat things with chemical additives and try your best to eat and buy organic when you can.  Have you considered that just buying any old brand of tampon is the same thing as eating chemically treated foods?  Your skin is the biggest organ in your body and is highly permeable.  So I challenge you to do your own research on the subject, and consider trying the Diva cup, or at least consider changing to organic cotton tampons and pads.

I’m not trying to scare people, but to help them be aware that it isn’t a myth or so rare that it couldn’t possibly happen to you. My intention is to educate and let you know that TSS is real and I’ve lived through it. I would be happy to answer any questions about TSS and to provide advice regarding the whole subject. I am not a doctor, but I have spent a lot of time educating myself on the subject over the past several years since it happened.

I am not sure I could go so far as to say that the experience changed my life, but I can say I am grateful for what I have.  Life is too sweet to risk it on some thing as silly as a tampon.

Erin

PS: Dear Diva Cup manufacturers, please please stop making the bags for the Diva cup with the ugly daisies. Also, no one wants a daisy charm with the word Diva on it. This is 2016, not 1996.  We want cute little discreet bags, plain and simple. Thank you.

9 Comments

  1. Zerrin

    Love my Diva Cup. Been using it maybe 4 years now. Will never go back. Like you, it took some getting used to, but am a pro now. Thanks for sharing; I will work harder to get my two girls to learn the Diva Cup.

  2. Jen

    Thanks for sharing your story. I got some organic pads for my daughter. I did tell her about the Cup but she is not comfortable with that. I will keep my intention strong to change her mind. Thanks again.

    • erin

      Thank you! So glad I could make a good impact. The Diva cup definitely takes getting used to. Starting with organic pads is a great start for a teenager. There are tons of different products on Amazon or even in your local store. There is also nothing wrong with using organic tampons (for example on a day when you want to go swimming, just use it only while swimming, etc), so long as they are managed really well, and I would never recommend wearing one overnight.

  3. Samantha

    Though it came with a (too long) delay, your experience made me switch to the diva cup last year. It was surprisingly much easier than anything else once you get the hang of it. Plan to go back to it after baby is born and nursing is done : )

  4. Caroline

    Thanks for telling your story.

    Re Diva Cup, I wish they’d make a slightly smaller version – in both diameter and length. I’d use over the washable pads I have.

    • erin

      I know. I believe there are other brands out there that might be a better fit. I just wish it didn’t cost money to test them all out!

    • erin

      Wow! Thanks for letting me know. I did some research into your statement because when I started using the Diva cup in 2013 my Dr. recommended it for me and there had not been a single report of TSS from the cup. From the research I have done and from what I can find, there was only one case of TSS from the menstrual cup in 2015. She had scratched herself while putting in the cup, and then still wore the cup. As with all things, even tampons, you have to use common sense and follow the guidelines laid out. TSS is actually from a bacteria we all already have in our bodies, however things like tampons can cause abrasions or other issues down there that make it a perfect breeding ground for bacteria to multiply and begin to cause issues. My point being, with all things, we have to follow the guidelines and not over wear or misuse tampons or menstrual cups or even pads. Got keep those lady bits in good order. Also, most tampons don’t even have to list what they are actually made of on the box, so some of us don’t even know what we are using. Versus the cup, you at least know and can have more control over things.

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