MN State Senate Hearing

I’m off to the Capital!

Tomorrow afternoon is the senate hearing for the Minnesota Lyme bill, otherwise known as S.F. 1631. The bill is striving to protect the rights of both doctors and patients in the treatment of Lyme Disease.

I’m very curious about this process. It should be pretty interesting, if not madly overwhelming.

Wish us good luck!

More details can be found here and here.

I’ll post a follow-up as soon as I can!

 

(2-9-10) UPDATE: The hearing yesterday went about as well as I could have expected! It was a long, drawn out few hours filled with both Doctor and patient testimonies. We certainly packed the house, that’s for sure! It was surreal to see so many other people there who were affected by Lyme; but it was a reassuring feeling as we got down to business.

Long story short – The bill was approved after a 5 to 3 vote on the senate committee level, and will now be passed onto the senate floor!

Oh, sweet victory!

We’ll take them as they come, and hold our breath as we wait for the legislative process to continue. I’m so happy that I was able to attend the hearing, and see this process with my own eyes. Parts were emotional, irritating, nerve-wracking, and overall hilarious. But in the end it was worth it.

This article has been floating around my Lyme circles today on Facebook and Twitter. Check it out!

Legislators hear testimony about treatment of Lyme disease

 

“May good luck be your friend in whatever you do and may trouble be always a stranger to you.” – Irish blessing

Guilt-free Goodness!

Ah. I love baking. It’s such a calming experience. I feel so much more relaxed after time in the kitchen (on most days). Tonight I had 3 very overripe  bananas – that had accidentally ripped open this morning – sitting on my counter. What to do, oh what to do?

Banana bread of course!

I have no clue why, but I’ve been craving banana bread for the past 3 weeks. I’d made a loaf a few weeks ago when the craving began that was delicious, but of course when I went looking for it I couldn’t remember which recipe I’d made! Well, to be honest, at first I couldn’t even find it. Then – aren’t I smart? – I thought to look in our growing GF cookbook binder. Sadly, I found several banana bread recipes there and not just one. That would have been too easy.

Confusion ensued.

In the end I gave up and decided to go searching for a new recipe. A better recipe. I’ve experimented with stevia sweetened baked goods. I’ve even had a few good results! But the recipe I found tonight is A-M-A-Z-I-N-G. Ok, so maybe not that dramatic. But it is delicious!

It’s gluten-free, sugar-free, dairy-free and yeast-free! Guilt-free goodness, my Lyme friends!

It’s not beautiful, but here’s a photo:

It tasted better than it looks, I promise! The bread stuck in my pan and the entire loaf fell apart. Better luck next time. Hey, at least I got to eat the middle part first (my favorite). I’ll post the recipe eventually. I want to make a few revisions to it still.

I know what I’m having for breakfast. Yum!

Peace and healing, molly

 

“The roots of all goodness lie in the soil of appreciation for goodness.” – Dalai Lama

Nerves, Nerves, Nerves!

I’m jumpy lately. I just when my name is called. I jump when I see somebody walk into the room. I jump when my dog’s squeaky toys squeeeak. I jump when my phone goes off. I even jump when my phone goes off on vibrate!

In short, I jump. Do you jump?

I feel like my nervous system has gone haywire on me. I’m having nerve pains everywhere, and like crazy. I can’t stop shaking. And now this sudden jumpiness. More Neuro Lyme symptoms?

What gives?

This must be a new level of herx.

More soon, love you all. I’m dead on my feet and my book is calling to me.

 

“Happiness means quiet nerves.” – W. C. Fields

Life with Lyme – Unpredictable

I’ve given up on the idea of predictability. It’s a myth, a scam, a relentless tease. At least, it is when you’re living life with Lyme. I’m not trying for the “half glass empty” approach, or the storm cloud affect. No I promise I’m not. I’m as hopeful as ever. I’m simply accepting reality.

I’ve known this for a long time. If this disease had an owner’s manual it would be remiss to omit it. But sometimes Lyme can just punch you in the stomach. Literally.

My last post was a celebratory one about the tilt table test results. At the time, I said this:

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!

Let’s see… that was on Friday the 22nd. A week later (last Friday) I was back at the hospital again. But this time I was getting an abdominal ultrasound.

The pain, and swelling, increased each day until my appointment with my LLMD on Wednesday. By that time the pain was literally in my entire abdomen. But it had localized with the most severe pains coming from underneath my ribcage on my left side. Yep, my spleen. Great!

I was measuring the swelling. At one point it was almost 3 inches more than my normal measurement. 3 inches! It stayed pretty steady around an increase of 2 inches for the week, however. The pain was dull, shooting, stabbing, burning – you name it. Sometimes I couldn’t even sit up straight.

My LLMD felt around (painfully!) and was worried since she could feel the tip of the spleen sticking out from the ribcage. I should mention that she had checked in early December and didn’t feel a thing. So, off I went for a blood draw and an ultrasound appointment.

It wasn’t too bad. The swelling had (of course) gone down since Wednesday by Friday. But the lady was so nice, and so quick about it. My mom and I grabbed a cup of tea at the coffee shop on the way out, and were home just as the sun had fully risen. Why it had to be that early I have no idea. I’m a person who doesn’t function until noon on a good day!

Anyway, it was Friday so we put a few calls into the office to make sure my Doctor got the results before the weekend, and surprisingly enough she called back with results in a few hours.

Normal. Let me say that again, louder: NORMAL.

When my mom told me I think my reaction was, “WHAT?!”

Something was, and is, seriously wrong here! How can everything look normal?! Ah. That is one of the great Lyme mysteries. We all ponder it, turn it over in our minds, and eventually fume about it.

My LLMD believes that my entire abdomen is enflamed and irritated from organs to intestines. My are nerves sending out haywire responses and my body doesn’t know what to do with them. Funny, neither do I.

So, I’m still in pain. It still hurts to touch my abdomen, and doing so causes a wave of nausea. The pain hasn’t let up since last week. I’ve lost my appetite almost completely. And, I’ve given up tracking the swollen ups and downs.

I’ve accepted that this is a phase in my treatment. Granted, an unexpected one and yes, unpredictable. But I’m not happy about it. Herx or med reaction, I don’t know. I only know that I haven’t lost all hope that it’ll be better when I wake up in the morning.

Much Lymie <3, molly

 

“It’s something unpredictable, but in the end is right.” ~ Green Day

 

An update from what transpired during the rest of my LLMD appointment will be coming this week. Mepron, oh Mepron!

All’s Well That Ends Well.

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

It’s a Tilt & Topple world out there.

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.

Too Tired to sleep. Oh, wait.

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