Wednesday, May 25, 2016

Fluoroquinolone poisoning and fear

I need to get out of this nightmare.

But there is no way out.

All there is is time, and whether or not time will provide me with healing or will leave me as one of the disabled ones.

In recent weeks, I have developed severe dry eye, dry nose, and dry mouth.

According to The Flox Report, these are bad prognosticators with regard to potential recovery from my fluoroquinolone poisoning. Click on the images below to view larger).

I haven't slept in 2 days despite multiple sleep aids.

Why? Because fluoroquinolone antibiotics can cause - and have caused in me - central nervous system damage.

I have a "floxed" friend who still cannot sleep more than 2 hours a night. She took her fluoroquinolone antibiotic 7 years ago.

This scares the shit out of me...

Frankly, many of the people I read about who get better are people who have a severe acute reaction, but who are improving by 6 months or so. The Flox Report has a chart for this also. Basically, if you're seeing improvements by month 6, that's a good sign. If, like me, you have new and worsening symptoms by month 6... well, it's bad.

Many severely poisoned persons like myself never get better. Some do get better, but it takes years. Because of my dry eye, nose, and mouth syndromes, I am very very frightened that I may never improve. I have between 40 - 50 symptoms presently, and new ones come on all the time. I have huge bald patches on my head.

I have so many symptoms that only the worst of the worst poisoned people get.

I need help, but there is no help for me.

Fluoroquinolones damage mitochondrial DNA. If too much is damaged, you live a life of disability.

All of this pain, and I never even had an infection...

Here is a rundown of recovery for severely poisoned persons, if they ever recover at all.

I fear I may, based on my timeline and symptoms, be the blue line on this graph. Which is, according to the report, the worst you can be:

I pray, I try to eat well. I supplement. I try to take as few medicines as I can just to make it through the day. Nothing helps.

If it'll let you know what I am dealing with, here's a relatively comprehensive list of my symptoms, though I am sure I have forgotten some:

Blurred vision

Inability to see clearly

Floaters in vision

Lightheadedness

Pain behind the eye

Severe dry eye

Dry mouth

Dry nose

Severe insomnia

Bloating

Nausea

Extreme panic attacks

burning in the hands

burning in the feet

numbness in the hands

numbness in the feet

"queasy quads" - a feeling as if my quads are being electricuted

Fevers or chills every day - temps range from 98 degrees to 100.4 degrees

Tachycardia

Variable blood pressure

General flu-like feeling

Profuse sweating

Muscle spasms

Heart pain/shortness of breath

Extreme hair loss

Internal tremors

External tremors

Night terrors

Nerve pain throughout the body. Feels like sunburn or something.

Vaginal pressure

Frequent urination

Cracking joints throughout the body

Reynaud's syndrome

palpitations

Flushing

Back pain

early onset osteoarthritis

Ear pressure/ ear pain

Tinnitis

widespread joint pain

body-wide tendon pain

tooth pain

Tooth breaking

head pressure

TMJ

dry skin

Bodywide itching

Each day I feel as if I am dying. And I cannot even get any sleep.

You know the above is not even a comprehensive list of everything fluoroquinolones can cause?

I am really, really struggling. I am really, really suffering.

Doctors often don't believe me. Or they will try to associate 1 or 2 symptoms with something else instead of looking at the whole picture. Like with my hair loss. They keep saying stress can cause hair loss. Well, yes it can. But it doesn't also cause scalp redness and baldness in patches. It also doesn't explain my other 50+ symptoms that all came on after taking the fluoroquinolone and steroids.

Someone please tell me I will still get better. Even if I am the worst case scenario in The Flox Report. Please, please - even with the dry sicca syndromes - am I going to get better? Please don't let me be permanently disabled and bedbound. Please.

Monday, May 16, 2016

Game of Thrones

In my house, the forbidden 4-letter "F" word is "film."

Why?

Because FUCK film, that's why.

As a youngling there was nothing I wanted more than to be involved in making movies.

That may be a lie. I probably would have accepted life as a mermaid or the gift of my very own personal unicorn at some point... But at least by fifth grade and my first viewing of "Gone With The Wind," I knew that set life was the life for me.

What are you in fifth grade? Like, 12? So I guess by 12 I knew that magic - at least the mermaid and unicorn kind - wasn't real. But movie magic sure as hell was, and I wanted to do it.

You know when Blanche DuBois says,"I don't want realism. I want magic! Yes, yes, magic!"?

Welp, that was me.

And for those of you astute enough to be counting, that's my second Vivien Leigh reference. For those even astuter (or just more well-versed in Erin's Inspiration Trivia), you'll know that Lady Olivier is the nail in my proverbial I-wanna-make-movies coffin.

But The Vivling isn't why I am writing this post.

Game of Thrones, ladies and gentlemen.

Game.

Of.

Thrones.

...

So I am new to this bandwagon.

Don't get me wrong, I tried to jump on when everyone else did, but those bastards killed a dire wolf in episode two and that pretty much killed me, so I couldn't go on for a few years.

But now, at the insistence of my brother, Hack McNaggins, I've decided to give the series another go.

And it's awesome.

The writing is (usually) superb, the characters well-defined and well-acted, the sets and special effects immaculate, and if the DPs aren't award winners they sure as fuck should be.

What I am saying is, I am really enjoying the show.

But that's not why I am writing either...

Remember at the beginning of this ramble when I said, "Fuck film"?

Yeah.

Those who know the Vivien facts also likely know the film facts - that I gave it up a few years ago. That the fake people (there's another vulgar "f" word for you), the backstabbing, the insecurity... I just couldn't take the people or the tripe.

I've always been a writer. Even back to my mermaid days - the days before GWTW and my obsession with film - I was addicted to a good story and I knew I wanted to write one.

Or one thousand.

But, like Margaret Mitchell, I figured I could settle for one.

:)

That's about as arrogant as I get, folks.

It makes me laugh.

To think I would "settle" for a story like "Gone With The Wind."

I must be out of my damned mind.

Anyway, story was and remains important to me.

And I wanted to get involved in film to tell stories.

A naive purist, I thought filmmaking was about making art - telling a poignant story in the most artistic way possible.

Folks on sets weren't "crew", but "artisans." Michelangelos bringing the plot points to life. Builders of worlds. Makers of dreams.

I wanted to do that.

So I studied and practiced. I performed. I became an apprentice at a professional theater company. I got an agent. I got a Master's Degree in film.

And I got disillusioned.

My experiences on professional sets were not movie magic.

More often, they were exercises in frustration.

I've gotten into the intricacies of those frustrations in other posts, but the Cliff's Notes version is that, like Blanche, I don't want reality. Reality bites. I want magic. And you don't get magic from snipey tripe. You just don't.

Anyway - Game of Thrones.

So, I'm into it, and I am feeling the magic.

I know, I know, days on set are likely long and arduous and there are fights.

It's real - dammit all.

But I am presently watching the Making of Game of Thrones.

It's G.O.T. from the vantage of the magic makers - the cinematographers, the prosthetics masters, the costumers, the set designers, the CGI folks...

THIS, ladies and gentlemen, is where the magic happens.

The glory typically goes to the actors - the folks whose faces you know and recognize.

And they play their parts - double entendre intended.

But I find myself really drawn to those folks behind the scenes. (Again, double entendre intended).

For these folks, the art lives. And the art is the driver.

Watching these folks in their workshops inspires me.

It reminds me of why I pursued film in the first place.

And I miss it.

Finally, years later, I miss film.

I never thought I would.

I never thought the film flame would flicker in me again.

But it has, and it does.

And I am thankful. Thankful in a way I don't really understand as yet.

I just know I like the feeling.

Thank you, behind-the-scenes artisans.

You've allowed "film" to rejoin the other 4-letter "f" word in returning to my good graces.

Maybe one of these days I will make some more fucking films!

:)

Tuesday, May 3, 2016

Absolution?

I cannot seem to stop reliving the past - specifically, the mistakes I made that lead me to this...

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...

2015:

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...