EEG

Packed and Ready to Go

Today, I go into the hospital for my video-monitoring EEG. I will be in the hospital for at least 24 hours and possibly up to 3 days, depending on whether or not I have any episodes. My appointment was tentatively at 11 this morning; however, I was instructed to call first and make sure there was a bed available. I called this morning and no beds were available yet, so now I'm on standby just waiting and waiting to get this over with...

The instructional paper I was given says I will be poked, prodded and tortured in any way the Epilepsy Monitoring Unit sees fit in order to raise the chances that I will have a seizure while I am there. Okay, maybe it wasn't worded exactly that way, but it might as well have been. Mostly, I'm told it's just going to be really, really, really boring.

I haven't had any full-fledged seizures, or pseudoseizures or whatever it is that we are calling them since my experience in the ER a week and a half ago (and hopefully we will have a name for them after this test!). I have, however, had some "minor" episodes. I wouldn't call them bona fide seizures, but something crazy is still going on in my body.

I've got my bags packed (including my awesome bunny slippers) and I'm ready and waiting to get this over with.  We've got a sitter lined up for the kids and my husband and I have decided we will just pretend we are on a date in a really crappy hotel. Here's to hoping this will shed some light on whatever the heck is happening inside my brain. Cheers, friends!

A Quick Update

It's late and I really need to get to sleep, but I wanted to post a quick update. I haven't had any seizures, since Wednesday--the night that I went to the ER because they wouldn't stop. More good news: My MRI results came back normal. I have an appointment scheduled on Friday, the 31st, for my video-monitoring EEG, to see if we can capture any of my episodes on video.

Today was the first day since the seizures started that I've been brave enough/felt well enough to venture out of the house for anything other than doctors appointments. We went to my favorite swimming hole--my happy place--so I could soak in the water to help my sore muscles. I also had a massage this evening, so I'm in good shape now!

My Happy Place

I really wanted to share my good news and say an extra special thanks for all the love and support I have received throughout this very difficult time in my Lyme journey. Thank you all; it means the world to me!

My Story of The Big Brush Off

Yesterday, I had over a dozen seizures. After a traumatic six hour ordeal in the ER, I was told by the neurologist (who witnessed an episode), "Well, you're probably just anxious and depressed because of your Lyme diagnosis." (Ahem, I was diagnosed two and a half years ago, lady!!)

She discharged me and I had another seizure in the car. Never in my life have I felt so completely helpless and outraged by the medical community (and as a Lyme patient, that's really saying a lot).

I had a CT scan and a ton of blood work at the hospital and everything came back normal. How I long for the day when instead of sending you home, the doctors will actually say, "Everything came back normal--except for your Lyme disease tests." But that's a blog post for another day...

The neurologist called my episodes non-epileptic seizures. It may be helpful to read this link about what a non-epileptic seizure is. I, however, was sent home with a very unhelpful and downright demeaning paper describing my supposed disorder (also called pseudo seizures) as "one with no medical cause." It goes on to state in the next paragraph that, "this disorder is caused by stress or emotional trauma." Well, which is it? Is there a cause or not??

The neurologist kept asking me in every way she could possibly think of if I was abused, either currently or in the past. She really didn't seem to believe my answer of no. The clincher? My helpful and informative paper about non-epileptic seizures actually says, "Sometimes, non-epileptic seizures may be due to a person faking the symptoms to get something he or she wants." (I really wish I had a link to where ever they printed this off from!)

The good news is, it's already 7:00 P.M. and I haven't had a single seizure today. I must be still too worn out from my Oscar-worthy performance in the ER last night to muster up the strength to put on another show! Someone give me a trophy, because my acting skills last night were killer!

Jokes aside, I had an MRI this morning and am still waiting on the results of that. I am also waiting on an appointment for a 24-hour video monitoring seizure test that will hopefully shed some light on what the heck is actually going on. I also have an upcoming appointment in a few weeks with a more Lyme-friendly neurologist.

If you don't have Lyme disease, you probably have no idea how badly Lyme patients are treated by numerous medical professionals who are prehistorically out-of-date on their Lyme disease knowledge. If you do have Lyme disease, you likely have your own version of The Story of Receiving the Big Brush Off By Doctors. (Feel free to send me a link to your story and I would be happy to publish a link at the bottom of this post.)

We don't tolerate bullying in schools. So why should we tolerate it in our healthcare system? In my head I keep replaying the scene over and over again--this neurologist who refused to even look at me (all questions were addressed to my husband, not me) asking me the same question: Am I being abused or bullied, either now or in the past?

My new answer: Yes, my whole life, doctors just like you have abused me by discrediting me and my pain, time and again. I am a person, a human being, and I am trusting doctors just like you with my most sacred treasure: my health. You may not understand much about Lyme disease and I'm okay with hearing you utter those words--that you simply don't understand what is happening to my body. But you do not, under any circumstances have the right to insinuate that what I'm going through is in my head or that I am making it up.

Because the truth of the matter is, I've already forgiven doctors just like you who were not able to see my diagnosis as Lyme disease, inadvertently causing me to suffer an inhumane amount of pain and suffering for perhaps the rest of my life from what should have been a curable disease, all because I let doctors just like you convince myself that maybe my pain and suffering wasn't legit.

Hope

For over two and a half years now, I've wrestled with the same question question: How do I live in harmony with chronic illness? I started this blog to chronicle my journey and my attempts at finding peace in the midst of the chaos of living with Lyme disease.

No one can predict what the future will hold for them (except maybe Miss Cleo), but with chronic illness, it's especially hard to plan for the future. So much of your life is up in the air. Making short-term plans can be a nightmare; making long-term plans, nearly impossible.

When I started this blog, I didn't make feeble attempts at guessing what my health would be like "X" years down the road, but I certainly didn't picture myself so sick this far down the road. Here I am, well into my Lyme disease journey and I've been thrown a completely new curve ball: I'm having seizures. A lot of them.

This is all new to me and a lot to digest. I feel like a lot of doors are being slammed shut in my life right now. I'm trying to be gentle with myself though, and I keep reminding myself that just because a door is closed right now, does not mean I won't be given the key in the future.

So now I'm wrestling with a new question: How do I live in harmony with seizures? Where do I put my hopes and dreams that I've already had to put on hold for so long? I want so badly to be able to fulfill my lifelong dream of becoming a massage therapist. I want to help other people struggling to cope with the life of chronic pain, but for now, the only way I can do that is through my words on this blog.

I'm sad and I'm scared. I want answers. But I still have hope. And honestly, that's really all that matters. I will overcome this!

I don't like this post already and I haven't even written it. So let me start off with something good. Two things I am grateful for about today: (One) a great phlebotomist and (Two) the fact that my horse is boarded right around the corner from my doctor's office. Maybe you've guessed by now that I'm not doing well.

Thursday was my birthday, and I kicked it off with a seizure. I hadn't had one in several months. Friday, I had another seizure. This morning I had two more episodes. Technically, we don't know if they are bona fide seizures. I've heard the terms partial seizures, pseudo-seizures and convulsions. Whatever you want to call them, they are scary.

I was able to get in to see my Lyme doctor this morning and she got to witness an episode. To make a long story short, I have to take a million medicines and I have to have a million tests done. I am nine vials of blood less than I was before my appointment (cheers to an awesome phlebotomist, though, which makes all the difference in the world!). I thought I was going to break my record for most number of vials of blood taken, but, I did not (12 is my record, for the record).

Brief visit with my pony after my doctor's appointment

So...This all stinks, and as expected, I'm scared, angry, frustrated and unhappy that all of this is happening to me. But there's not much else I can do but try to adjust, keep my chin up and stay positive. 

If you want to know how you can help, please consider making a donation in my honor to raise money for Lyme disease research. Feel free to share this post and/or link to my donation page.

Bicillin, Round Deux

When my Lyme disease is flaring up really badly (like now), my brain starts trying to spell things like a 1st grader would./Win mi lim dizeaz iz flar ring up rily badlee (lik naw), mi brayn starrts tri ying to spel things lik a furst grayder wod. Needless to say, writing has become incredibly difficult and time consuming for me.

Stringing together words and sentences into anything coherent is daunting and takes days. I'm embarrassed to admit that I've been working on this particular blog post for several days, desperately trying to put facts together in proper order, not omit any necessary information, and/or at the very least, to make this post make sense! If I don't break up my posts into small paragraphs, I'm not able to read them at all, which is a common problem among fellow Lyme sufferers.

Gratuitous picture of my cat to help break up the text. You're welcome, Lyme friends.

When I got off of my intramuscular Bicillin injections (shots to the butt) a few months ago, my nasty brain symptoms came back and I felt myself slipping back into the brain sludge that makes Lyme disease mimic Alzheimer's disease--finding myself lost in a brain unable to remember the whos, whats, whens, wheres and whys of daily life that most of us take for granted unless sickness comes and steals away our memory. (We don't even need to talk about the microwave incident today...)

I've fallen back down to functioning at a much lower level of my pre-sick self--maybe around 45%. I tire very easily and I can't remember anything without sticking post-it notes to my forehead.
So, on Mondays, Wednesdays and Fridays, my butt has a date with Bicillin, once again. Last Friday was my first day back on shots. The reason I'm back on these injections after I already did several months of them is that it was too soon to quit, (quitting the shots was my own personal decision and was not my doctor's suggestion) and so the Lyme disease came back with a vengeance.

Let us all pause for a brief intermission as we all OOH and AHH over this Mama Llama and her cute baby.

While on the shots, I was functioning at about 90 or 95%. The goal with Lyme treatment is to be symptom free for two months before quitting treatment. I thought I would be okay to switch from shots to oral antibiotics, but my body wasn't quite ready and my health has gone downhill ever since.

Most oral antibiotics do not cross the blood brain barrier, whereas intramuscular injections do. That is important in the case of chronic Lyme disease because this infection is in my brain. And I really, really, really would like my brain back! Perhaps it's time to start posting fliers on telephone poles in my neighborhood: REWARD! Have you seen this woman's brain? If found, please return (minus spirochetes) to Alyson.

Well, folks, my brain is shutting down now. So, go on! You've got your update! You'll get another post when my ability to read and write comes back. And if this post doesn't make a lick of sense, well, enjoy this picture of a frog...

Ribbit!