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I survived! My friends, I tilted and jilted and never toppled! (Sorry, I couldn’t resist…)

The tilt table test was (mostly) all bark and no bite.

My results were negative and the doctor performing the test said my responses were normal! Imagine that, something normal? Needless to say I didn’t argue the fact. He was a slightly condescending doctor – I have a feeling he doesn’t often perform these tests on 17 year-olds. Just a hunch, considering he asked if a “young lady” my age was still in high school these days.

I was hooked up to more sensors and wires and I could count, and was given IV fluids throughout the test. The nurse was awesome. I had an IV in under 5 minutes! Seriously, can I take her home and keep her? And, moving on, I had blood pressure cuffs on both arms, a device reading my pulse hooked onto my wrist, and was strapped onto the special table. It was actually really cool to see how all of the things worked. The nurses were laughing at me at one point when I couldn’t help but exclaim – “Cool!”.

I make no excuses. I’m really very easily amused.

Throughout the test they had to keep adjusting the pulse device. I don’t think it was working properly. And the machine was taking my blood pressure constantly! Or, what felt like constantly. I’m sure I’m not the only one here who has had to bite their lip when the cuff is tightened too much. Ouch! I’m often painful to the touch. My arms, shoulders, and neck are a mess today. After 20 minutes or so, they stood me up. And – not much happened! I was a little dizzier, a little more nauseous, and slightly lightheaded but it wasn’t too far away from normal for me.

After a while they sprayed something (I’ve already forgotten what) under my tongue to make my heart speed up as if adrenaline was kicking in. That didn’t make too much of a difference. I felt horrible though. Suddenly I was weak in the knees. It was taking all I could manage to keep my knees from buckling. My eye lids were drooping. My head felt so foggy. It was bizarre. But, of course, I couldn’t think of how to explain any of this. All I could say was “I’m so tired.”. I think they assumed it was because it was so early in the morning.

Nope.

Soon they tilted me back down to a sitting position and that was when the fun began. They assumed that things would run it’s course now and nothing else would happen. Why am I always surprising doctors? As soon as I laid down and closed me eyes I was gone. I was suddenly so dizzy, and I said so. They rushed at the machines. It soon passed, but it wasn’t fun. I’m guessing that it had more to do with the fact that I closed my eyes after all the movement than with POTS though. Closing my eyes always makes me swim a little – and I’m always more dizzy. Oh well.

So, long story short, no POTS! We’re chalking all the excess symptoms up to Lyme, I guess. And I do have a vestibular disorder to boot. So it’s not really surprising. It’ll be interesting to hear what my doctor says next week. She’ll have the results herself by then.

I spent the rest of the afternoon watching movies, snacking on popcorn, and sipping tea with my mom. Nothing like Joan Crawford to distract a girl. And I’d forgotten how much I loved the movie “The Bone Collector”! Wow!

I was dizzy, nauseous, and lightheaded. But yesterday seemed to be a hotbed of other suspicious Lyme symptoms. I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!

However, I think I’ve caught the worst of the recovery phase today. I’m not feeling well at all today. Sigh. At least I planned for this. I’m sad that I could anticipate this, but grateful that I’m able to know my body as well as I do.

Thank you, thank you for all of your prayers and thoughts this week!

Still feeling the love, molly

Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles. ~ Helen Keller

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Oh, what would I do without you all? Between those who follow the blog, my best friends, and my amazing family I truly have a wonderful support system. All week I’ve been feeling the love. I can feel the prayers, and intentions. And they make me stronger. Knowing I’ve got so many on my side, cheering for me, and walking with me as I travel my journey is not only just strengthening, but so reassuring.

THANK YOU!

I love you all, more than I can say.

Now – I came to the conclusion years ago that my world was different that most. Some of you can (unfortunately) empathize with me when I say that mine is a Tilt & Topple world.

“Hi. My name is molly and I’m dizzy!”

At any moment I can lose my balance. The room can swim around me, or I can suddenly be swimming myself. Walls can become my best friend and ceiling fans my arch nemesis. I’m careful not to bend down too quickly. And, I’m always aware of how my weight is balanced. Stairs are sometimes a tricky feat but then again, so is walking in general.

I’ve gone through vestibular therapy and training – twice- and lived to tell about it.

Bright and early tomorrow morning is the dreaded tilt table test. Yes, I have little doubt that tomorrow my world will seem Tilt & Topple once again. Sigh. I can’t avoid the tilt. Let’s just hope I don’t topple!

I’ve promised myself that I won’t lie here – to myself or to you. So I fully admit that I’m nervous. So nervous. I know that I’ll be fine, but I remember the way I felt when we first began to suspect POTS and I don’t want to feel that way again.

Weak. Lightheaded. Confused. Helpless.

Not to mention the nausea. Oh goodness. I’ve been more nauseous than usual lately, and the more dizzy I become the more nauseous I get! (We stocked up on lemons – warm lemon water is a wonderful nausea reducer. FIY.)

I don’t even know what I want the results of this test to be. Do I want to have POTS? It would help explain a lot! I don’t want another diagnosis to deal with though. But what would it mean if the test result is negative? I just don’t know.

My motto is: When in doubt think positively and never lose hope.

Every night for the past two weeks I’ve considered blogging. I wanted to. But the thought of it made me cringe. And I couldn’t figure out why! I think it’s because there’s so much that I haven’t written about. The month since my last doctor appointment alone feels like it’s been a lifetime. So, I’m just going to jump right in. I’m sure I’ll miss some things, but I think I’ll cover the most important. Or, at least I’ll get some things off my mind.

I go in next week for my monthly check-in, and I have until then to try to remember all that I need to talk about. The Babesia has hit me hard lately. I was sick over most of my Christmas break, unfortunately. I’ve herxed harder since October than I ever have. Hence, my disappearance from the blogosphere. On the day that I began taking the Mepron I was knocked for a loop by my 2nd dose. Yes, my 2nd dose. It was literally a matter of less than ten hours by the time my body was retaliating. I was shaking with a temperature of 102 by dinner, and didn’t get over the worst of it until two days later. Since then I haven’t gone more than a week without a herx reappearance – some lasting just day or two, and others lasting weeks.

I’m in a fog and lost in the symptoms. They keep piling up and I’m losing track! The temperatures have come back, and so has the stomach pains, shakiness, dizziness, breathing troubles, and my Bartonella rash. The latest culprits are nerve-related. Seemingly at random parts of my body will feel a chilling burning sensation. I know, that makes no sense.  But I don’t know how else to describe it! Other times it’s just a slow, steady warming that spreads. And, I haven’t had this much trouble breathing in years. That’s one of the only reasons I know for sure (other than the Mepron) that this is really being stirred up by the Babesia.

There’s more, I know it. But I think that those are the most relevant right now. Other than the brain fog which has reached astronomical levels.

I forgot to mention – most likely because I forgot until late last week that it was even happening – that I finally got scheduled for a tilt table test. We’ve been waiting for this since July or August. I think I’ve talked about it here before, but to remind those of us who have a failing memory the purpose of this particular test is to determine whether POTS is causing any of my issues. POTS stands for Postural Orthostatic Tachycardia Syndrome.

I’m not at all happy about the thought of this test. I’m so dizzy and nauseous already! Being strapped to a moving table isn’t going to help me any. I’m just hoping that it goes smoothly. So give me a thought on Thursday morning, please. I can use all the happy, healing, positive thoughts and prayers I can get!

Alright, I *might* be tired enough to sleep now. I think getting this all off my chest helped a bit :)

And a shout-out to a few of my friends for taking me out today! I had a blast. I always do when you guys give me the chance to feel normal for a while. Thank you!!

I’ll be back soon. Promise. I have school news to share.

G’night all. Sweet dreams!

molly

1st Lyme Year

As promised, here’s the celebratory photos from January 1st. Me and my gluten-free cupcake! Yes, yes, lots of sugar in it but I didn’t care. It was delicious!

My 1st Lyme anniversary of treatment seemed like something to celebrate!

Lyme-iversary 1

Please, let me apologize for my (very) prolonged absence. The last few months have been rough, and I think I needed the time away from the blog. It was hard; I felt the loss, but this Babesia has really hit me hard.

However – I have so much to share and so much to tell you! Life hasn’t stopped since I left you. No, it definitely has not. It’s gone marching forward. So far forward that before I knew it January had snuck up on me.

I’m feeling profoundly grateful. And add to that a sense of pride, hope, and determination, too. I’ve officially survived a full year of Lyme treatment! And what a wild, crazy & unexpected year it was! On January 1st, 2009 I took my first dose of Doxycycline, and began my Lyme journey. Three days ago, a full year later, I was with my closest friends as they watched me deftly swallow my Mepron and force down almost 20 pills. But I didn’t care. Do you know why? Because I survived.

Thank you – from the very bottom of my heart – to all those who helped me though this journey, and to those of you who helped me celebrate my anniversary! I don’t know what I’d do without you. You’ve paved the way for my small successes against this disease.

Photos and a longer update will come soon!

It’s a new year, a new decade, and a new year of Lyme treatment. I don’t know what this year has in stock for me. I can’t pretend that I’m prepared for it. But I am ready to feel the victory this time again next year.

Happy belated New Years! Wishing you a peaceful, and a healthy year filled to the brim with joy, happiness, and hope.

Cheers!

 

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope”

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” ~ Bill Cosby

I usually leave you with just one quote to ponder with me. But tonight I’m offering two. Hope, and laughter have been some of the best medicine for me this year.

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