I must confess, I feel it is my fault. Or, if not my fault, then certainly the result of action I took, which, at the time I hoped were in my best interest.
Hindsight is 20/20.
And so was my vision - before I was given 7 potent antibiotics plus steroids last August.
How did this happen?...
Well, this story actually likely starts back in 2009...
In 2009 I had a tooth pulled. No muss, no fuss.
But in the days and weeks following the pull, I noticed I was getting headaches every day. And that's not normal for me. As the headaches progressed, so did a pain that ran down the entirety of my left side (the side from which they pulled the tooth). I had head pain, neck and shoulder pain, and then pain that ran down my left leg. My vision went blurry.
I knew something was terribly wrong so I went to the ER. Twice. They found nothing wrong.
I went to neuro specialists. They found nothing wrong.
I asked one: could this be from the pulled tooth? Might I have an infection?
If you had an infection, you;d know it, came his snide reply...
Finally I went to an internist who listened to my tooth theory. While she couldn't prove infection, she prescribed me antibiotics. One to two months' worth, in fact.
By the end of the two months, I was completely healed. No more pain, no more headaches, no more blurred vision.
Antibiotics saved my life...
I think it's important to keep that in mind as I tell the rest of my story...
July 12 - black uterine bleeding presents. I've never had this happen before and am terrified. Call my OBGYN. Office girl says it's normal and it should subside.
So I wait...
July 18 - black bleeding still present. Suddenly abdomen balloons. I get very nauseous. It becomes impossible to eat. After just a bite, I feel uncomfortably full and nauseous. I am shaking and sweating profusely. Fearing something is very wrong, go to ER. In the ER they scan and find I have cervical polyps - this is the cause of the bleeding. No cause is found for nausea. Sent home with nausea meds.
July 20 - Have polyps removed by Gyno. Am assured I will be feeling 100% ASAP. Says not to expect more bleeding but he will send off my polyps to have a lab confirm they are cervical and not uterine.
Week of July 20 - nausea, profuse sweating, belly distention and high heart rate continue. As does bleeding. Start to feel woozy often. Polyps come back from lab. They are uterine. I will need minor surgery.
July 24 - Go to the ER again for same symptoms. Again, they can find nothing wrong in blood tests. See another gyno for second opinion because first gyno says nausea etc are all "nerves." Want to make sure he is right and that the polyps are my only problem. Second gyno confirms polyps are all she can see and prescribes a hormone to help stop my bleeding.
Weekend: take hormone, have leg cramps. Call second gyno who says leg cramps are not a side effect of hormone. I tell her I have the side effects sheet and it lists leg cramps as side effect of hormone. She informs me - very rudely - so much so it made me cry - that I should 1. never read the warnings and side effects because doing so would just make me never want to take medicine again and 2. that my nausea, sweating, fainting etc are "all nerves", but if I "insist" it's something else, I should go see a gastro.
I should stop here for a moment and say this was a deciding factor for me - this advice. Not only did it lead to everything that followed, but it also played a role in me taking meds I didn't trust. Why? Because I didn't want to be ridiculed my doctors again.
July 27 - make appointment with gastro. Make sure gastro is in same system as other docs so everyone has all records. Full on faint for the first time and spend the rest of the night nauseous, unable to eat, in the bed.
July 28 - Another ER trip. Same results. Can't figure out what's wrong. Go to gastro. HERE IS WHERE MY MISTAKES BEGIN. I tell gastro of the medical history thusfar. I tell him I cannot eat, am nauseous all the time, am fainting, am bleeding. I tell him the nausea etc came on about a week after the bleeding started. I tell him I think I must have an infection, because it came on so suddenly and I am feeling so terrible. Gastro gives me 5 prescriptions. 5.
At this point, I already think this is overkill. He does not tell me what's wrong with me. He doesn't even do any tests. He tells me he wants me to get a colonoscopy (why?) and an EGD and in the mean time to take the meds.
Cipro 2x a day for 14 days. Flagyl 3x a day for 14 days. Reglan multiple times a day. Prevacid. And I think the last med was a nausea med or a constipation med.
I get the Cipro, Flagyl and Reglan filled. The Prevacid he gave me in samples. I read the warnings on each med. Each of these meds has a BLACK BOX WARNING.
This is my second mistake.
I don't trust this dr. I know he hasn't done any tests, and I think 5 meds is crazy to give someone. Even if something works, how do you know which one it is?
At this point I also didn't know what a Black Box Warning was. But I saw that all of my scripts had one. So I thought - damnit - that every med had this kind of thing on it. I thought that because, as I said, all the meds he gave me had one.
Among the warnings were: Cipro - could cause tendinitis. Flagyl - could cause neuropathy. Reglan - could cause uncontrollable muscle spasming. I remember telling Scott I was scared of these side effects. I asked if I should take them... but I was feeling so bad - and I had never had a problem with antibiotics before - so I did as the dr. said.
Week of July 28 - I emailed the gastro several times, both to report my progress (I was feeling better, but I didn't know which med was doing it) and to report that I now had numbness in my hands and feet (this was a HUGE warning sign that he and I missed. He told me I should see a neurologist about the numbness. He didn't tell me it was the meds he prescribed that could be causing it) and a lump in my throat that wouldn't go away. The doc said to cease Cipro because it could cause the throat lump, but I found by process of elimination that it was actually the Reglan that was causing the lump in my throat. But ceasing the Reglan also made the nausea come back full force.
I reported this to my gastro.
This was an important clue. Reglan is used to treat gastroparesis. That it was helping my symptoms was a neon flashing sign that what I was suffering from was gastroparesis - where your stomach and intestines are not moving food through quickly or efficiently.
The gastro said he had an alternative for Reglan - erythromycin - that he didn't want to start me on because erythromycin is an antibiotic and I was already on the Cipro and Flagyl. He should have discontinued C and F and moved me over. If he had, none of the rest might have happened.
Aug. 2 - Back at ER. Despite C and F I am still crazy nauseous, lightheaded, faint, sweaty. My belly is still distended (again, from gastroparesis). ER gyno on call comes down, gets me off the C and F and instead puts me on Doxycycline. This is a just in case measure, it seems, because none of my cultures come up as having an infection.
Aug. 7 - surgery day. I still feel godawful and cannot wait to get these polyps out so everything will be back to normal. I remain convinced that when the polyps go, they'll take the nausea et all with them. While under anesthesia, I am given an antibiotic to prevent infection. For those of you who are counting, that makes 4 antibiotics in about two weeks.
Week after Aug. 7 - I am told the bleeding will cease in a few days. It doesn't. As I said, I believed the nausea et all would go away with the polyps. After all, the two gynos had said it was just "nerves." Now that everything was over and done, no more nerves right? So why was I still so freaking sick?
Aug. 10 - Still bleeding. Still distended stomach. Still nausea. Still faint. I email the gastro. He wants to start me on erythromicin. I am scared and skeptical because he has already prescribed so much. So I don't follow up with him. I likely should have gone with the erythromycin, based on what happened next.
I call the gyno office because I have been having some difficulty with pain during urination. In retrospect, this was likely from the surgery and should have gone away in time. But this was my NEXT BIG MISTAKE. I told the lady on the gyno phone that I was having difficulty peeing and it might be a UTI. She said she'd prescribe me an antibiotic. I told her I had some antibiotics at home since I had been given some previously. Which ones, she asked. Cipro and Flagyl, I said. Cipro oughta do it, she said.
Aug. 15 - I am in Baltimore with Scott on a trip we'd planned for months. I seldom leave the bed. I cannot eat. Suddenly the numbness in my hands and feet becomes burning pain. And my quads feel like they have been ripped to shreds while inside my body. I have no idea what's going on but I am very, very sick. And still bleeding. I finish the Cipro.
Week of August 15 - I go to Urgent Care about the blood and the pain. I am terrified something is very wrong. I am terrified I have something like Pelvic Inflammatory Disease because I am still bleeding and shouldn't be, and I otherwise feel so bad I am in sincere panic that I may die. Scans continue to show nothing. No one can tell me why I am so ill.
I go to see another gyno - one my mom recommends. The woman gives me an exam, sees how sick I am, and hospitalizes me. While in the hospital I am given 3 more antibiotics via IV (in the event I do have Pelvic Inflammatory Disease, despite negative cultures) and also a hefty dose of steroids so that I can take an iron infusion because I was so low. I go along with all of it because I am so sick and I think if I am in the hospital they are going to "fix" me.
This was likely the nail in my coffin.
Three days later I am discharged, still sick as ever, and suddenly my vision - again, 20/20 previously - goes blurry and won't correct.
Since then, I have been stumbling from dr. to dr., research to research, to figure out what the hell happened to me.
To this day, I have no idea why I continued to bleed for 70 days. Or why my period - once regular as clockwork, went haywire and hasn't recovered.
But what I have learned is this - I had a very stressful 2015 - moved twice, switched jobs, planned a wedding. I got sick a lot in 2015 as well. And for those illnesses was given antibiotics.
When the polyps came I think my body just broke. Anyway, I got dysautonomia, a rare neurological disorder wherein the autonomic nervous system (which controls digestion, among other things) stopped working correctly. It gave me the gastroparesis and fainting symptoms...
I never had an infection.
I never should have been given 1 antibiotic, much less 7.
I certainly shouldn't have been given Cipro.
But my question to you today, my good people, is - is this my fault? Did I do this to myself by going to multiple doctors? By not challenging what they prescribed me? By not listening to my gut?
Did I do this to myself?
At least in some way, I think so.
And the guilt is perhaps the only thing that weighs on my as heavily as my ongoing illness...