He landed safely back in Norfolk the week before last. Brought the boys USNavy hats and played basketball with them for hours : ) We haven't seen him in A YEAR. Learned about Navy life and heard about pieces of his journey with stops in Oman, Sicily and elsewhere. They participated and/or assisted in several missions throughout the Middle East while they were there. I told Connor there was probably more action in the Middle East during his 9 months at sea than in the last 50 years! Hopeully his next voyage will be a little less active - militarily speaking.
Also - been meaning to post these for awhile. Tee ball games are fun for the whole family and The Bats parents and other siblings are a lot of fun to hang out with. We've really enjoyed the season so far. Only 4 games left with team pictures next week : )
This is a big post for me. I've been writing it in my head for a week. Plotting how to get it just perfect. But the truth is, I just want to get it out and over with. Most of you are aware, to some degree, that I've been battling mysterious health issues for the past 8 years. I've been to opthalmologists, neurologists, gynecologists, general practictioners and very nearly, a psychologist, trying to figure out what is wrong with me. I've written novels about my symptoms, drawn color coded diagrams for neurologists, begged and pleaded for more tests, balled my brains out in countless doctors' offices and personally watched every episode of Mystery Diagnosis that exists. At the end of the day, according to modern medicine, there is absolutely nothing wrong with me.
I lost peripheral sensation in my left side in 2003. Loss of peripheral sensation in my right side followed a few years later in 2006. I've lost vision in one or both eyes for short periods, though thank God it has always come back. I have permanent "floaters" in my vision and assume I always will. I have battled dehabilitating bouts of fatigue - at my worst, for 6 weeks straight. I have "tremors" that strike out of the blue and cause the room to feel as though it's bouncing back and forth (they don't even phase me anymore!) I have lost the use of my hands for hours at a time on several occasions. At times, I have trouble speaking, swallowing and forming thoughts. If I listed all the weird shit that's happened to me in the last 8 years this post would never end. If I've never told you any of this - don't feel bad - I stopped talking about it and forbade Charles from discussing it with anyone about 4 years ago after a particularly frustrating bout with my last batch of neurologists. Their take away was that I needed extensive psychological testing and that I should try going on an antidepressant to see if it helped. I got so pissed off I haven't been to a doctor regarding my "mystery illness" since : ) And as not to be misunderstood, I was not pissed off that they thought I was crazy. I was pissed off that they weren't listening to me. I knew with every fiber of my being that I wasn't depressed and that stress was not the root of my issues. The only thing depressing was that after 4 years (at the time) this was the best my doctors could come up with! Pathetic.
**Disclaimer** This would be a good time to grab a drink and get comfortable : )
In February of 2003, I was prescribed Levaquin, a very powerful antibiotic from a class of antibiotics known as fluoroquinolones. I think it was for a UTI. I now know that it is ridiculous to have been prescribed an antibiotic like this for such a minor infection but hey - these are the facts. I took it for a few days and quickly noticed that I was having crazy, graphic nightmares and a lot of trouble sleeping which was totally out of character for me. I also noticed that I felt sad and just generally strange. I think I called my doctor at the time - but I know I stopped taking it immediately. I felt depressed for weeks afterward and had terrible insomnia for over a month. I remember b/c it was the weirdest sensation I've ever had. You'd be just about to drift off to sleep and your body would literally jolt you out of sleep - an actual physical spasm but with this electrical jolt to it. It was frightening. I also distinctly remember doing a little research on Levaquin at the time and sending out a mass email to friends and family to never take it.
I'm not rock solid on the timing between this and the onset of all the serious stuff but at some point after this - weeks or months - possibly a year - I stepped into the shower one morning and realized in horror that I could feel the water running down the right side of my body but not the left. Thus began the horrible set of sequences that was to be my next 5-7 years. Enter MRI's, nerve conduction tests, eye exams, etc. ad nauseum. Blah , blah, blah...nothing is wrong - just deal with it, etc. The worst of it seemed to hit in 2006/2007. I have a letter I wrote to Devlyn around that time apologizing b/c I didn't think I was going to be able to be the type of Mom I wanted to be for him. I has seen my health decline so much at that point that I was scared and afraid for the future. At the time, I genuinely thought I may be permanently disabled within a year. I still read that letter every couple of years to remind myself of how far I've come.
Fast forward to 2 weeks ago. I have a UTI for the first time in years. I go to the dctr - they prescribe an antibiotic. I take it, I start to feel better and then as I'm going to bed that night - having trouble getting to sleep - finally drifting off to sleep and...JOLT!!!! that weird sensation I haven't felt in 8 years strikes me. The unique horrifying familiarity of that sensation launched me into one of those moments you've heard others describe - a watershed moment - a lightbulb goes off over your head - everything connects in a single second. I knew right then and there that whatever I'd just taken was the same as what I'd taken before and that something very, very bad has to do with it. I jumped out of bed, ran downstairs, grabbed the medicine bottle and flew online. Sure enough the antibiotic I had taken (under a generic name) was another fluoroquinolone. I stayed up all night and read everything I could find about these drugs. What I ended up reading were other's accounts of what I have been going through for the past 8 years. Every single weird ass thing that has happened to me (and other things MUCH MUCH worse) were described, before my eyes, in detail by others - on organized community pages, on personal blogs, in a documentary film for Christ's sake produced in concurrence with a class action lawsuit against the FDA for allowing these drugs to be distributed without formalized, serious warnings about their potential side effects. The "research" "says" that less than 1% of the population suffers an adverse reaction to these drugs. Unfortunately, if you are among that 1% (which I believe is MUCH higher but underreported like me!) the side effects are, for the most part, serious, permanent and irreversible. Joint problems, peripheral neuropathy, chronic exhaustion, brain damage and optic toxicity are all among them. I am 300% positive this is what has been ailing me all these years. I find it unacceptable and frightening that the government and the medical community haven't been able to come up with a more thorough warning system to prevent against the obvious dangers these drugs pose. I am stunned that after all that I've gone through in my search to find answers, living where I do, down the street from Big Pharma (RTP) and "The City of Medicine" (Durham) that not once did any doctor, nurse, lab technician, ANYONE ever ask me had I ever taken a fluoroquinolone. Not even remotely on their radar - not a chance in hell that would have come up. NOBODY KNOWS. I read it over and over in other's accounts - doctors don't believe this happens. It's been proven, there is study after study - class action lawsuits - thousands of documented "survivors" and still no organized, effective recognition or warning. Again, pathetic.
So, yes, my nerves are shot. The GABA receptors in my brain are toast. Charles and I found a doctor in California who has been studying this for years and as soon as I am done gathering my medical records and prescription history we're going to have a phone consultation with him. Word on the street is that if you have had repeated exposure to these drugs and you have an adverse reaction to them - you're in for quite a ride. Great. I have lost significantly more feeling on my left side and have had a rough two weeks but it seems to be leveling off and I know the drill. I've been here before. I have also been in contact with an esteemed acupuncturist in Chapel Hill. A lot of oncologists from UNC send their patients to him for nerve damage. I spoke with him at length last week. I wanted to know if he had ever heard of this and/or if he has treated people like me before. Luckily he has. He said that the most severe problems are caused by the fluoroquinolone I took first - Levaquin. He likened it's affect on my system to an atom bomb and that it was as powerful as having had chemo. Can you believe that? It's hard for me to process. Anyway, I'm on the fence about acupuncture. I really want to do it but he explained to me that the treatment I would need would require 20-30 needles on each side. I know I can get over it but it's going to take me a few weeks to get there!
So I am ok. I do want you to know that. I am in the middle of processing 8 years of crappy shit that has happened to me, that, in my opinion, was totally preventable and should never have happened. I have an amazing life and family and am SO grateful for everything around me - 2 things in particular : ) It was important to me to write this post so that the people in my life know what I've been through and what I am going through. Just having written this makes me feel like you all truly know me now. And I haven't felt that way in a long, long time. This revelation, while pretty shitty, has also been truly enlightening. Hard to describe what a HUGE relief it is to know what has been happening to me all these years.
Also one last thing - I've learned that if you have this adverse reaction - others in your family are more likely to have this reaction as well so ,please, unless you're dying of sepsis or have been exposed to anthrax - DO NOT take fluoroquinolone antibiotics. And spread the word - everyone deserves to be well informed about these powerful drugs. Here are some links to the documentary I mentioned and other websites with good info. Parts 5 and 6 of the documentary (which I embedded below) - the United pilot's story really resonated with me. So much like my own experience (minus the 9/11 part of course):
Charles celebrated 52 last Sunday : ) I didn't realize until the day of that the "5" candle from Devlyn's 5th in November and the "2" candle from Blake's 2nd in October would come in so handy! Two candles....three birthdays and a lot of years between them! Perfectly fitting in it's own special way. Just like the decadent, raisin "toast" cake we slapped together for Daddy Sunday morning, ablaze with special meaning ; ) Looking forward to Derby Day this Saturday! I trust everyone has their mint julep ingredients ready to go? My money will be on Twice the Appeal - hard to go wrong with Calvin at the reins. Be sure to check out the new slideshow. And Happy Mother's Day!
