Archive for the 'Myoclonic Jerking' Category

The Writing On The Wall

April 25th, 2013

I’m not going to lie. Things have been a little poopie around here lately. For one thing, it won’t stop snowing. It’s gotten kinda ridiculous. Poor Harley Rae is from Tennessee and isn’t sure what to make of it. Too cold for southern dog! And beyond that, I’ve been feeling like poop too.

eyeIf you’ve been following this blog for a while, you will know that I’ve been struggling with a MYSTERIOUS ILLNESS for a WHILE. It’s kind of a long story. And it’s pretty annoying. But basically, I have a super FREAKED OUT IMMUNE SYSTEM that likes to MALFUNCTION in all kinds of weird ways. For the last seven years, I’ve been diligently going to the doctor trying to get answers. I’ve gotten diagnosed with all kinds of things. Symptoms range from crazy RASHES to DIGESTIVE DISTURBANCES to RESPIRATORY PROBLEMS to BLOOD PROBLEMS to NEUROLOGICAL PROBLEMS to inflammation in weird parts of my body (like my EYEBALL, for example) to being insanely tired to all out ORGANS GOING OFFLINE (not even sure how to describe what happened here…at the time, nobody else did either). Anyway, it’s a long story. But the links (in all caps) go back to the past.

armLately though, things have escalated a lot. First, I got diagnosed with a BLEEDING ULCER. Then, I started to have these crazy rashes all over my body. They’re super itchy. And they pretty much come and go all the time. I’ve had them for a few months now. Sometimes they get really intense. The thing that keeps coming up with all these weird symptoms and the one thing that they all have in common is that they are all complications of LUPUS. The word lupus really freaks people out. Basically, it means that your immune system can’t tell the difference between your own tissue and foreign cells. So it attacks normal tissue in your body. It can happen anywhere. I’ve pretty much had a gut feeling that that’s what is wrong with me since about six months after my TOXIC EXPOSURE. You just know. But whenever I would bring it up, I would get blitzkreiged with all this negativity. NO!! That’s not what you have. It’s all in your head. Are you sure? Take it back! It’s not true!

I get it. Nobody wants me to have lupus. Truth be told, I don’t want to have it either. Having lupus is bad enough. But getting diagnosed with lupus is almost as bad as just having lupus. It’s a total mind f&ck. I’m not kidding. People think you’re crazy when you say that. Which is part of why it’s so messed up. People who don’t know start to think you’re crazy. But it’s actually a real thing. My doctor even told me about it.

lupus bookThis book talks a lot about it too. It’s the definitive book on lupus written by a guy who specializes in it. Basically, it’s a really hard to diagnose disease. There’s a lot of far ranging symptoms that can be caused by a lot of things. So people go around in a limbo for years until it becomes obvious what it is. Meanwhile, you keep finding yourself in messed up situations.  Because nobody around really understands how sick you are.  Going to the doctor involves getting passed around to all these specialists who do all kinds of tests.  And let me tell you, they aren’t cheap.  Not at all.  And in the end, nobody really knows anything.  So it really starts to feel like a dead end after a while.  Which is why I’ve been throwing a tantrum about NOT WANTING TO GO TO THE DOCTOR.  Honestly, I’m still figuring out what I want to do about it. Right now, it’s just kind of this spector that’s casting a shadow over me.

 werewolfThe word lupus means wolf in latin. I guess the disease was named that because most people get diagnosed when they start getting these crazy rashes that make them look wolf-like. It feels more glamorous to me to think of it like I’m turning into a werewolf when it happens. Somehow more poetic than feeling like you have some weird disease. I mean after all, all the best super heroes are weird mutants that turn into werewolves at night. Right?


Anti-Nuclear Meltdown

December 8th, 2011

Just when you thought it was safe to go back in the water, you realize it’s a little cold for your taste. Isn’t that how it always goes? Well, I’ve been having this kind of ongoing discussion with my doctor ever since my LAST MEDICAL MELTDOWN.

eye drama
Remember this one? When my eye swelled up for no reason. Again. They were going to send me back to rheumatology when I had a meltdown. Long story short, I’ve already been there TWICE. It was awful. Really expensive, really emotionally draining, really unproductive, frustrating, and negative. Basically, a step in the wrong direction on multiple levels. So I had a MELTDOWN.

mosquito bite
If you’ve been following this blog for any length of time you will know of my struggle with a MYSTERIOUS AUTOIMMUNE ILLNESS. Despite years of BIZARRE UNEXPLAINED SYMPTOMS and HOSPITALIZATIONS following a TOXIC EXPOSURE. It’s kind of a long story. (An epic saga, if you will).

In any event, I got the news last week that I tested positive for ANA (anti-nuclear antibody) again. This has actually happened a COUPLE TIMES already. And each time, I went through the testing process and was worked into a tizzy only to be told that it was all in my head. Apparently, this is a pretty common occurrence for people with autoimmune disease. Having a meltdown from being run through the ringer when asking for help is par for the course. According to my doctor, people (who are clearly sick) can go through this process for up to twenty years! And doctors recommend anti-depressants. To help patients get through it. Really? Seriously?! I need to go on drugs to tolerate an unacceptable situation. Two words. NO THANKS!! I’ve done my time. After that, it becomes the recipe for insanity.

I had a long talk with my doctor about it. She seems to understand where I’m coming from. And sympathize. At this point, it appears that it’s one of two things. It’s either lupus. Or it’s some other disease that’s closely related to lupus that doesn’t have a name. So, basically I have lupus. Lupus basically means that you’re immune system is miscalibrated (which mine definitely is). Your immune system attacks normal cells in your body causing disease. I personally think that my immune system is attacking toxic stuff that has become part of my body since my exposure. And the reason I think this is because I have these violent seizure-like episodes (called MYOCLONIC JERKING) at times. It’s always centered on my diaphragm. And it literally feels like my body is trying to kick something out. In the end though, a name is just a name. It’s not going to change my symptoms. It’s not going to make me feel better. Why do I care? I am already self-medicating with my anti-inflammation diet. I’m not interested in going on the drugs. So why put myself through all this? Truly. What is the point? The medical testing and wild goose chase are literally going to bankrupt me. I’m not doing this anymore. I want my life back! And I don’t want to spend the remaining precious energy that I have on pointless dysfunction. I think that as long as patients tolerate this situation, it will be perpetuated.

There are more important things in life. Like, look how cute my kitty is? OK. Technically, she’s my boyfriend’s kitty. But she snuggles with me more (probably because I’m ALLERGIC TO HER).

twin town
Oh yeah. And I love to play guitar. And I used to be in a band. And do all kinds of interesting things. And those things have been passing me by. It’s time to reclaim them.

So that’s what I’m doing. Check it out. I just played a recital with my GUITAR TEACHER, Jeremy, last weekend. And I am getting ready to officially launch my business (stay tuned for details coming soon)! I’m on a mission to rebuild my life on my terms.

And it all starts here. Check out my latest video for this RUSTIC HOLIDAY FLATBREAD. My boyfriend says it’s my most creative recipe yet. Not only does it not exacerbate inflammation. Like normal bread. It’s actually anti-inflammatory! I’m filming the companion video for this today. A holiday cheese platter. Check back soon…


Rock Bottom

August 4th, 2011

inspired window
I feel like I’m bottoming out. Things aren’t looking too good. At least on paper. But somehow, I have this sort of delusional perception of reality that says otherwise. I absolutely do not see it right now. The solution. But miracles happen every day. Right? Is that crazy? I got some more bad news this week. My MRI RESULTS. Maybe they didn’t TELL ME ALL AT ONCE so I wouldn’t get depressed. Basically, they were as bad as they thought. Worse even. My back is a mess. I have a bunch of damaged discs. I don’t even remember how many. Five or six. Two are torn, and the rest are just bulging into my spine. Thus, the nerve problems. I’ve had three different doctors tell me I might have to get back surgery. Not exactly what I wanted to hear.

mosquito bite
The stress is making my body do lots of weird things. Like really bad MYOCLONIC JERKING. And this. It’s a mosquito bite. And some days, it feels like I’m losing the function of my right hand. I actually feel like I’m doing lots of positive things for my health. (In case you haven’t noticed). It’s just mainly the stress that I haven’t gotten a handle on. But sometimes, stressful things just happen. Or a strings of them. And you do the best you can.

Kitty has been really protective of me lately. It’s pretty cute. She follows me around wherever I go. And when I leave, she waits by the door for me. Other people’s pets have been acting weird too. The other day, I went to a friend’s house (when I had the above blister). And as soon as I walked in the door, their dog freaked out. She honed in on the blister right away and started licking it like crazy. And after that, she just calmed down and went and sat in the corner. It was very strange. So, even though things look bad on paper, I get the feeling that there are larger forces at work looking after me. I’d like to think so anyway…


The Monster In My Closet

April 20th, 2011

Well, the time has come. I have got to get something off my chest. Something that I have been wrestling with for almost five years. In the beginning, it seemed like a straightforward enough problem. One that I could deal with and move on from efficiently. Once it was defined, anyway. So I stuffed it away in my closet figuring that once things were neatly sorted out, I would deal with it appropriately. No need to raise alarms now, I thought. I’m not even sure what it is.

Well, in that time, IT turned out to be much more than I bargained for. In just about every respect. The more I looked for answers, the more elusive they became. The monster in my closet grew and grew. The uncertainty just made it grow more. Meanwhile, I waited. Once I find the answers, I’ll be able to slay the dragon, I thought. But the answers never came. At least, not from where they were supposed to. And the monster only grew.

baby me and mom

Me and my mom (a few years back)

Well, now the monster has outgrown me. It’s clearly beyond my control at this point. It can no longer be contained in my closet. It’s time to let him out, warts and all. And let the pieces fall where they may. So, here it is…

Five years ago, I suffered a severe toxic exposure. I haven’t spoken very explicitly about it here because it was a very messy situation. But I am coming to realize now that not putting my truth out into the world is only hurting me. I need to connect with that truth now so that I can truly move through this situation (instead of carrying the baggage around). Essentially, I discovered that I had been living over an open sewer main for four years. I discovered this because I was getting sick and not knowing why. And my instinct (and a few calls to people more knowledgeable than I) led me to discover that the plumbing in my apartment was not as it should have been.

I went through a lot after this. Initially, I developed severe respiratory and digestive issues. For six weeks, I had the most horrible, fully body, dry, possessed by aliens and sounding like a dying animal cough. Then, I was finally sent to the right doctor who determined that I had in fact been exposed to toxic sewer gas and that the hydrogen sulfide in the gas had eaten through the lining of my lungs causing my respiratory issues (which incidentally never went away).

not sugar plums
Once I got the respiratory (most immediate threat) issues under control, we started to work on my digestive system. This was much more complicated. Initially, I went through several rounds of testing for every possible infection, parasite, allergy, etc. This took a while. Essentially, they do one round of tests and don’t figure anything out. Then, they send you home until it gets bad enough for you to come back. Since previous rounds of testing were generally unproductive, I think most people put off going back until they reach new levels of discomfort. Needless to say, it’s a less than pleasant process. After they exhaust all the tests, they send you in for a COLONOSCOPY. Where you actually get to see your insides on TV! The colonoscopy was actually not so bad. It was the endoscopy that was traumatic. I think they are generally supposed to put you under for this. But for whatever reason, they decided to feed the camera tube down my throat while I was awake. I was literally crying and fighting my gag reflex back while they were yelling at me to ‘BREATHE!’. This was to stop the dry heaving. Remind me to never do that again.

Anyway, they determined after this that I was most likely having an allergic reaction to something I was eating and that I should do an elimination diet to figure out what it was. All in all, it took me fifteen months to figure out that I had developed a sensitivity to chemicals in my food. This is what attracted me in the beginning to raw food. This is also what led me to realize just how ubiquitous chemicals in our food are and how vigilant one must be in this day and age to avoid them. Well, raw food was the most natural and unprocessed diet I could find. AND it was ideal for people that were trying to detoxify their systems which seemed right up my alley. My main obstacle at this point was that I didn’t know how to cook. At all. This was about the time when I started this blog.

Once I got the digestive issues somewhat stabilized, a new issue STARTED TO EMERGE. I had a foreshadowing event, I suppose. Some UNEXPLAINED TEST RESULTS. I had gotten strange calls from my doctors telling me not to be worried but that I had some test results that were raising concerns. Well, as anyone with any unexplained medical symptoms will tell you, this is precisely the kind of call you need to be worried about.

It wasn’t long after that I ended up in the HOSPITAL with severe hepatitis. This is a long story in and of itself. So, I will spare you the details. But essentially my liver sort of imploded. I had a number of infections and test results at the time. I had Hepatitis A and Mono. Plus, some strange ANTIBODY RESULTS. The mono infection lasted for a year and a half. Though I didn’t know this at the time. I was told during the infection that it might be a FALSE POSITIVE. That it was more likely an immune system disorder, and I didn’t have Mono. For a year and a half I suffered through my life trying to pretend everything was okay and not knowing why things definitely weren’t. As it turns out, I actually DID have mono for all that time. But I still probably have some sort of immune system disorder. They’re still figuring things out.

weird eye
Since that time, I’ve had a number of unexplained symptoms and test results. Like these involuntary movements, for example. My body just jerks for no reason. Sometimes violently. Whatever it is that I have is very unusual. Right now, I have a really bad ulcer in my throat from a recurring thrush infection (that friend that you don’t really have anything in common with but you can’t really get rid of). Thrush infections are really common in people with compromised immune systems. They are not sure if my compromised immune system is caused by an immune system disorder or my damaged liver or both. Whatever it is, it’s clear that it’s not going anywhere anytime soon.

yoga girl
This brings me to my current conundrum. For five years, I’ve been waiting for an answer. The explanation that makes all of this make sense. A diagnosis. If I had this, I thought, I could connect with others who have the same thing. I could get answers! I could get help! But they haven’t come. Meanwhile, I’ve just been stuffing things in the closet to deal with later (when I finally get the answer!). But what I’m realizing now is that waiting for my answer is doing more harm than good. Maybe there ARE no answers. Maybe I will NEVER find them. Maybe that IS the answer. Whatever I have is some sort of environmental illness that is common among people with toxic exposures. In fact, this weekend out of desperation I started to look for studies of people exposed to sewer gas. Interestingly, I found a number of separate epidemiological studies conducted all over the world on sanitation workers and discovered that my symptoms are almost IDENTICAL to theirs!! It absolutely infuriates me that so many people all over the world suffer through illness for no good reason. And that other people make money from this. And this makes it impossible for them to see the suffering they are inflicting.

This was brought more into focus for me recently by current events in JAPAN. And the impact that is having on my family there. Seriously, HOW MANY PEOPLE HAVE TO GET SICK AND SUFFER LIKE THIS BEFORE SOMETHING CHANGES?!!