My name is Ronda, I’m 34. I’m an editorial consultant in California. I’ve always been a pretty athletic and active person. As a kid and teenager, I took many dance classes. Walking 5 or 10 miles in a day has never phased me, as I’ve never owned a car, and I’ve always walked where I needed to go. I had muscular legs that always got me where I needed to go. From August 2010 to March 2012, I lost 80 pounds after beginning a running regimen. I have participated in two firewalks – one before floxing and one after. That’s the kind of person I am. I’m sorry if my story is a bit long, but I feel like I have to get it all out. In March 2012, one morning, I woke up at around 3am in a lot of pain. It felt like a UTI, and I’d had them in the past. I’d drink some cranberry juice and that would be that. I had cranberry juice, but the UTI didn’t seem to go away. A day later, there was blood in my urine. My then boyfriend, now husband, took me to Planned Parenthood, since I didn’t have any health insurance. They ran a culture, but found no bacteria. They gave me Sulfa “just in case”. I took most of this medicine, but not all because I tend to have sensitivities to medications/chemicals and this one gave me a nasty headache, hives, asthma the works. It was making me pretty darn sick, and I was really mad because they weren’t supposed to give it to anyone who had a history of asthma/lung problems. I was feeling worse than I had when I started it. I figured it was fine that I didn’t take the last two doses since things had cleared up and there wasn’t any bacteria anyway. Not quite a month later, I woke up in that same awful pain. Only this time, by noon, not only did I have blood in my urine, but there was tissue in it as well and what looked like pus. Now, let me say that I knew it wasn’t a miscarriage – both b/c I’d just menstruated and because the birth control device – a diaphragm – was still in place. (I’m sorry if this is TMI, but it’s relevant, I swear.) So…reluctant go to Planned Parenthood again after they’d already messed with me so much, we went to the local clinic. However, we were turned away because I didn’t have any health insurance. After going to the hospital’s clinic and being told it would be a few hours before I could be seen (and seeing how dirty the waiting room was) and the fact that I was hunched over, unable to stand up straight, we reluctantly went to Planned Parenthood again. The nurse said that I must have a really nasty UTI and that it must have really nasty superbugs since they hung out since the last time. Once again, I gave a urine sample. I had no reason to believe otherwise; after all, it felt like some of the UTIs I’d had. The only difference was the tissue. She gave me a 3 day 500 mg course of Cipro. Since I believed that I must have a really nasty infection, I didn’t question the authority or whether I should wait to start the antibiotic regimen until when they received the results of the culture. They were sending out for it, and they would have it back on Monday. I went in on a Thursday, and began my course immediately. I read the box warning, and made note to call as soon as I had a reaction, and I followed all the rules – still thinking I had some sort of superbug multiplying in my bladder. After taking the first dose, about an hour later, my head began to hurt. I associated it with the bladder infection, not the medication. The headache continued the next day, though my then fiancé and I went for a walk anyway. I’ve always been one of those unless it’s actively killing me, I’m going to get out and do stuff people. The third day, Saturday came, and I felt worse. I hurt everywhere. Honestly, I thought it was because I’d pushed myself too much the previous two days, so I rested. I never associated it with the medication even though I had read all the warnings. I wasn’t sure that the medicine was causing the kind of pain I was having. I had only one dose left anyway – Sunday’s morning dose. The clinic was closed until Monday, so I couldn’t call my physician to ask whether I should stop taking the medication. Still thinking of the superbug, and figuring that if it was the medication the pain would go away after that last dose, I took the last dose Sunday morning. What happened about an hour later, myself and my now husband will never forget, because it changed our lives forever. I got up and had breakfast, and as I ate, I progressively felt worse and worse. After eating, I went to lay down in bed again. Within about twenty minutes, I was screaming in pain. I gave birth, vaginally, to a 9 pound, 11 ounce kid with a 22 centimeter head when I was 20. That pain had nothing on this. It was the worst pain I’d experienced in my entire life. I began screaming. My fiancé came running in. I couldn’t move. I was completely weak, and I felt like I was paralyzed from the neck down. He helped me get up anyway. I was in tears. He thought if I could stand up, then maybe I was okay. It was almost impossible, but he brought me to a standing position. I felt as though I’d been hit by a train, backed up over, then run over again. Everything in my body hurt. Since I didn’t have insurance, I refused to go to the hospital – knowing that doing so would mean that he and I would be paying for it for the rest of our lives… and thinking, still, that the pain would go away in a few hours when the medication got out of my system.
Monday morning, I was still in excruciating pain, and by then I’d developed a tremor in my right arm. Planned Parenthood called. I didn’t have any bacteria in the culture. I told them about the reaction. The nurse told me it would go away in a couple months and that it was stupid of me to have continued the medication – even though she told me to make sure I took all of the medication when I’d picked it up and by the time I realized I was having a reaction to the medication, I only had one dose left and I was under the impression, because she told me, that I had some sort of superbug in my system! By this time, I’d found the stories online, and I was feeling pretty darn hopeless that it was going to just go away. I’m a Googler. I just wish I had googled it before I took it.
By Wednesday, what I call the rotating pain and the “foot thing” had begun. The pain was no longer all over. Instead, it was random zaps of pain that would make me squeal out. IT would move. My feet became ultra-sensitive, and I couldn’t stand touching the floor with them. They would go from feeling like ice blocks to like they were on fire to like they were being tickled. The tremors got worse. I’d lost all strength in my arms. Monday, I wasn’t able to move the espresso machine, something I’ve moved thousands of times, when cleaning the kitchen. Tuesday night I wasn’t able to lift a pan of turkey meatloaf out of the oven. I was in tears. I couldn’t cut a sausage. It was bad! So my fiancé took me into the clinic that had originally refused me. They told him we would have to pay up front. He said, no problem, we need to figure out what’s going on. I went in, and the doctor made me feel worse than any doctor has EVER made me feel. He treated me like a criminal. He used a Levaquin pen to take notes, and there were advertisements for cipro and levaquin around the office. He tried to convince me that I had Lupus though I already knew I didn’t have that. He still insisted on drawing blood for it. By the time we left the office, I was in tears. My fiancé was outraged. We were both certain it was cipro that had done this – and the gaul of that guy! My legs would hurt and curl up on me and shake. I was still barely able to get around by myself. I work from home, and up until this point, I was able to keep house while my fiancé was at work. I couldn’t do that. I wasn’t able to sit for more than 10 minutes. The headaches were horrible. I would cry out in pain. I was scared. My fiancé and I started looking at how to get me health insurance, as no one in our town would touch me with a ten foot pole to diagnose me without it. The worst part? I was still having pelvic area pain. A month later, with no improvement, we determined since we were engaged anyway, and since my fiancé had good health insurance – I was self employed, and so this being a situation where because I don’t have any employees I wouldn’t be exempt from the no prior conditions clause…well to insure myself and my son it would be astronomical, for just basic coverage…I wouldn’t qualify for any state assistance because as a household, we made too much. It was clear. We got married a year and a month earlier than we had planned. My husband began setting up appointments for me with everyone from a dentist to a family doctor.
I couldn’t get in to the doctor for another month. When I did, he took me seriously! I was surprised. He had me do labs. Meanwhile, I was to drink as much water and Gatorade as I could stand. I got my wisdom teeth out. I got my eyes checked. I was given vicodin for the wisdom teeth. As soon as it wore off, it would be that darned hit by a truck feeling. I stopped taking the vicodin. I didn’t take any of the advil or aleve or anything, because it made everything worse. I drank lots of water. Things got way worse. I started itching everywhere. Things got better. Things got worse. Then…depression kicked in. Then, things got really worse. I’d been unable to consistently work for months. I was upset. But the pelvic pain got way way worse. At the same time, all my lab results came back. Everything was great – except for the fact that I had a severe vitamin D deficiency. The good news was I didn’t seem to have any muscle damage. Great – but what was causing all the pain then? Things got better again after taking Vitamin D. My husband, son and I took a trip. But things were inconsistent. One day I’d feel okay. The next day I’d be on my back. We went hiking through Oregon’s waterfalls. One moment I’d be okay. The next my right side wouldn’t be listening to me. My strength was back…sometimes…That was in June and July. The order of events are fuzzy to me. By the time I got into the doctor’s office, I went from 185lbs and a size 6/8 in March to 225 and a size 14/16. I was told it was safe for me to run again. I tried. My husband and I took walks together. Again, it was all inconsistent. Some days I would be fine, other days I wouldn’t. It made no sense. Things were starting to get back to normal, but then I had another setback. I’d started to have horrible periods. They were just large clots. I had a LOT of pain in my pelvic region (and still do). We went in again. An ultrasound was ordered. We got it – there was a mass in there…the doctor said it looked like a fibroid, but if I was still having problems in a couple weeks, to have another ultrasound. At this point, I started having sores that wouldn’t heal on my arms…from bug bites. I fell completely apart. My poor husband! He’s a saint. One day I would feel fine. The next day I wouldn’t. I can’t remember a day for the last couple months where I didn’t cry at least once. The tremors in the right arm have been consistent enough for me to have what I call “stupid hands.” Where I’m holding onto something and it flies out of my hands because I start tremoring again. I’m a writer/editor and I can barely focus long enough to work. The thought that something was wrong with my reproductive system was too much. It sent me over the edge into what I think is full-blown depression. I just try to deal with one day at a time. Finally, the time came for the second ultrasound. It was a polyp, not a fibroid. Sigh. So…referral city here we come. The doctor suggested I try Recharge instead of Gatorade since I appeared to be allergic to something in Gatorade. Recharge is all natural and contains no MSG. I’ve been drinking the Recharge at the rate of two bottles a day for the past week. For the most part, my symptoms were completely under control – I thought “WOW this is great!” until Monday. Monday morning, I woke up with that familiar hit by a train feeling. I had a meeting with my son’s school, where I had to walk 45 minutes. Even though I felt awful when I woke up, I thought, “Well I’ve been doing pretty well, lately, so I should be able to make it, and my husband will be picking us both up afterwards.” Boy was I wrong. Even though last week, I was able to go on a 45 minute run/walk with my husband, after only 5 minutes of walking, I was in pain. By the time I was halfway to the school, I was having to drag my right foot along, because it wouldn’t move on its own. My son had my cell phone at school. I had no way of calling anyone and no choice but to continue to the school, since I was on a bike path. I got there, had the meeting, and when I saw my husband, I burst into tears. I couldn’t step up onto a curb. The pain in my legs continued – pain that I hadn’t felt for a while – and the leg bending began again. That wasn’t the worst of it. At 1:00 am Tuesday morning, as my husband and I were settling into bed, I was paralyzed by chest pain. When I was finally able to talk again, I asked my husband to grab me a tums – thinking it was heartburn. The pain continued into the following day, feeling like anxiety…going into my arms…etc. At a couple points during the day I thought about going to the hospital. I took a baby asprin and figured I’d wait to see what happened. The pain went away within a few minutes of taking the asprin. My husband got home, and we were making dinner. I went to grab bowls out of a drawer (mixing bowls). Both arms began to tremor. I started screaming for him to grab the bowls because I couldn’t stop my arms from shaking. He grabbed the bowls, one had broken – that’s how violent the tremor was. It subsided. We finished dinner and went to WalMart to get my son the final part of a costume for a speech he was giving today. At walmart I felt sharp pain in my right shoulder and all of a sudden my legs wouldn’t move. It subsided, and we got home. My chest was still hurting, and now, I was short of breath. My husband called our doctor’s practice and spoke to the on-call doctor. He advised us to go to the emergency room, so we did. They took me in right away and hooked me up to an EKG. The EKG came back normal. They did a battery of tests. My tests all came back normal and showed me to be in perfect health once again. We were there from 12am until 5am. It was suggested I do a follow up with my family doctor to see what might be going on and do a stress test. I was asked if I’d done any heavy lifting or heavy cleaning, because it seemed as though maybe if it wasn’t my heart it might be musculoskeletal in nature. I hadn’t done any heavy lifting or cleaning. Sigh. So, I tell my story out of frustration. I’m now at 248 pounds. I don’t know why I’ve gained so much weight in such a short time other than the inability to be consistently active. Most the time I just deal with the symptoms. I hurt, but I went out to dinner and dancing with my husband for the 1 year anniversary of when we met. I danced as long as I could until my legs gave out. I hurt the next day, but my thought has been this throughout the whole experience: If I’m going to hurt anyway, I’d rather be in pain living my life to the fullest extent than be in pain lying around. I have good days and I have bad days. I went run/walking with my husband. I kept feeling like my legs were going to crumble under me, but I did it anyway to build my strength back up. I was glad I did it even if the next day was spent on the couch. Most of last week was good. Monday, Tuesday, and Today have been horrendous, but my husband has been there for me through it all as my cheerleader and as the person who pushes me to go a little further than I think I can go. It’s like the ocean…you’ve just gotta keep riding the waves out. I look forward to running a 5k again…one day, I will be better enough to run a marathon – and I will do it because I can. I can’t wait to hike again. You can bet, when I’m able to, I’m going to enjoy every second of it. I have faith that this hell will end. The photo is of my husband and I at the Pacific Science Center on our trip to Seattle in June/July. The side of my right leg had a muscle spasm and it had swollen up. Even though I was in a LOT of pain and had to sit down a lot while we were out at museums, I was smiling. It was great to see all the wonderful sites and exhibits that we saw around Seattle in those two weeks.
2014 update –
Ronda – “Well, let’s see…past the one I did on September 17…my daughter was born through natural birth two months after that update, on schedule. I was too terrified to take a chance with any medications then. I was on zoloft, because my anxiety got out of control, and I did a cost benefit analysis and decided that being calm would be better for her than the constant high blood pressure. I’ve done okay on and off…same deal. I’m in the middle of another regression following eating (without thinking about it) conventional ice cream in a root beer float four days ago. I rarely sleep. I take the following suppliments most days to help alleviate symtoms – milk thistle, L-Carnatine, Taurine, kelp, vitamin d, vitamin b6. I’m dealing with some anxiety/depression issues (I went off the zoloft) but I’m not sure if that’s cipro-related/zoloft withdrawal related/or postpartum related…but most days I’m ok. Still trying to investigate with a neurologist what’s going on since I’m still having suspected seizures and i’ll have numbness randomly, mostly on the right side of my body… pregnancy alleviated a LOT of the symptoms as well…so…yeah, just hanging in there 2 years later…”
Lisa – “How’s your kiddo doing? Is s/he healthy and happy? Most floxie kids are.”
Ronda – “
Oh yeah she’s absolutely happy and healthy. And crazy strong. She’s reached all of her milestones early. I was so worried while pregnant about whether it would have affected her…but she’s great.