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First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.
I want to talk about the actual storm of the moment.
Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.
I stalled for time. Putting off the inevitable, I guessed.
Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.
I’m not good. But I’ve been so, so much worse.
I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.
These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.
I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.
I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.
I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.
My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.
And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.
I won’t let this disease win. This round isn’t over yet.
I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.
Ask me if I’m ok tomorrow.
I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?
May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.
Yours in peace and healing, molly
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.
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
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.
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!
, originally uploaded by Jessie Koon.
This popped up in my Twitter feed today from Kind Over Matter. All I can say, is that I honestly and absolutely believe that things happen for a reason. One thing happens that causes something else, and before you know it there’s a chain reaction leading to an exact moment in your life. Most of the time these undercurrents go unnoticed in our lives. I love to stop and notice those movements in life, and enjoy the pure the serendipity involved.
This photo is exactly what I needed to see this morning.
I woke up feeling miserable. I was moving slowly, stiffly, nauseously. I couldn’t eat a bite. I could barely stand long enough to get dressed, never mind the make-up. Vertigo swished and swirled around me as I tried to bend down. It was as bad as I’ve been in a long, long time.
And this had been building up all week. Each day worse than the day before it. And this morning I almost cried. Today was the day that I had been asked by my school to tape a PR video testimonial interview. I was so excited to do this. I believe in my school, and it’s mission. This was a chance I jumped at. And I woke up in worse shape than I had imagined.
That’s when I saw this photo. I smiled. And I knew that this was meant for me to see this morning. It brought out that motivation I needed, that knowledge that I could do this. I wanted to do it, and I wanted to do all I could to help myself achieve this.
I pushed myself to swallow my handful of pills and go to my craniosacral appointment. I’m so incredibly grateful for my therapist there. She is amazing -inspiring and motivating me to focus myself for this opportunity, and then focusing herself on my body.
She worked a miracle today.
I just got home from the interview, and it was the most fun I’ve had in a while. And, remember, I’m one of those people who usually have fun doing anything! This was incredible. I’m so grateful, and sincerely happy to have gotten the chance to do this! It was great, and I was great! I pulled something out of myself, and I hope that what I brought to this process today will help someone. I know it was worth it if it does.
I had to share this with you!
Peace and healing, molly
Lately, I’ve been working to make sure and do what’s best for me right now, in the moment, as it happens. Most of my minutes however, seem planned out. I wake up, and have supplements and probiotics to take. Then I have to wait at least an hour until I can eat breakfast. I read the paper, wander out to my raspberry patch to pick a few berries, check my Facebook and Twitter. You know, all the normal things. Then suddenly I have to think about when I’m allowed to take my vitamins, and my afternoon medications, and my early evening medications, and then my nightly dose of fiber, and then, my night medications. It’s a lot. It’s really a lot. Add onto that summer school and you have one tired girl. It feels as if moment after moment I have something, somewhere, that I should be doing, or taking.
One of those things is my detox baths. I do like taking them. The Epsom salt in them makes the steaming hot water not hurt my muscles, which used to be the case. I couldn’t take baths for years because the hot water would make me feel horrible. I’ve tried to make them as enjoyable as possible. I have a plethora of essential oils to choose from and add depending on my mood or how I’m feeling. So in the winter these baths are wonderful. Quite pleasant. Extremely tiring and exhausting, yes; but worth the effort to detox my body. I can tell when I need it. However…
Piping hot Epsom salt detox baths are fine in the freezing Minnesota winter months, but in the summer heat I’m strangely not drawn to them. I wonder, “Where’s my motivation?”. And then I realize, “Oh yeah; The motivation is not feeling like crap any more!”. So I go run a bath, sweat it up, and don’t accomplish much of anything for the rest of the day. Yeah, sounds about right.
I’m exhausted now, and I didn’t even have time for a bath today. Instead my mom and I took a trip out to a local natural foods store to check out their Gluten-free options. We went in searching for bulk flours and a loaf of bread. A few hours and a cart of of Gluten-free goodies later, we heard a voice. Turned out to be the loudspeaker, thank God, announcing that the sale of 10% off all your Gluten-free food items would be over in 10 minutes. Needless to say, we dropped the search for a bread mix and ran to the register!
In that store I was in heaven! All Gluten-free items were marked with red tags on the shelf. Do you know how much simpler that made our shopping? They had so many options for us to choose over we were almost overwhelmed. Perhaps the most thrilling is their selection of bulk flours. So much more inexpensive than we’re used to paying! We found noodles, pizza crusts, bread sticks, pretzels, oatmeal, and goat milk yogurt! And so much more. No question about it – we’ll be going back! We must have been there a few hours. Sure, we’ve seen a lot of these things before. But this time we given options, so many more ideas, products, and foods that we could trust.
So what did we do when we got home? My mom and I dug up all the empty jars in the basement and labeled our new bulk flours, rice, and noodles. They all have red tags on them clearly stating that they’re Gluten-free with the cooking directions right there. Every time I open that cabinet I just get a smile on my face. Our food, and my dad’s food, all arranged neat and tidy. I need to be able to see my food, or I’ll forget it’s there. Honestly! I also cleared out all our kitchen food cabinets. I rearranged, threw out, and emptied the contents. One shelf is now only and completely Gluten-free. There’s no crumbs in it and no confusion involved. I know that I can eat every single thing on that shelf! I feel so liberated!
Liberated and dead tired that is. I probably did altogether too much stuff today, but it made me happy at the time. I think that must count for something. I believe that I am in the middle of a herx right now though. I’m now on my third week of my newest treatment plan. One week on antibiotics, one week off, and this week I’ve gone back on again. It’s been hard, I won’t lie. My daily headaches are back, as well at the nausea and dizziness, the shakiness, and the pain. I’ve worked though some of it because I need to finish my summer course soon, but there have been times that I knew I needed to stop. I just needed to rest, take a break, and let my body do it’s job.
Sometimes, that’s all you can do.
Peace and healing, molly
“When an illness knocks you on your ass, you should stay down and relax for a while before trying to get back up. “ ~ Candea Core-Starke
Yes, yes I know. I’ve been slack in updating lately. I fully acknowledge it! The last few months have held so many ups and downs that I’m exhausted just trying to think about it. Trying being the key word there, as I’m already exhausted before even trying to think. Quite a conundrum, I’d say.
So, wow. Six months of treatment for my Lyme. I’m still trying to wrap my mind around it. The hardest aspect of this update is accepting that just a few months ago I hit the point where I felt as badly as I had last winter in November and December. That’s huge. I hadn’t felt like that in all of these months. And I hit this low while I was off my antibiotics. Am I really getting better yet? I don’t know. Right now, I don’t feel like I am. But I’m holding onto my favorite affirmation: Everything is getting better every day.
Today marks the end of my first week back on antibiotics after my Mayo experience. I’m still not feeling quite myself. I feel a disconnect between my mind and my body. My brain fog is insane right now. I can’t keep a thought in my mind. I’ve got a constant headache, and I’m so very tired. It feels as if it take a huge effort on my part to accomplish anything.
I have accomplished a lot lately, but perhaps I took too much on. Again, I don’t know.
My LLMD feels that being taken off the Levaquin is what finally brought my intracranial pressure down. She’s comfortable putting me back on her treatment plan, but we’re proceeding cautiously. I wish it could be more aggressive though. I want to see the end of the tunnel, not just know that it’s there. You know? So currently I’ve got a week on antibiotics and then a week off. I see her again on the 14th to check in and learn what will come next. She’s keeping an eye on my adrenal functions now too. I’ve begun taking a low dose of licorice extract each morning hoping to up my cortisol levels. Their low functioning might be what causing some of my deep fatigue.
In the meantime, my eye specialist isn’t completely assured by Mayo’s findings. I go in to see her on the 15th, and will hopefully be able to start lowering my dose of medication controlling my spinal pressure. We’ve found that many of it’s side-affects are actually my Lyme symptoms. It would be nice to know which they’re being caused by!
I’m still enjoying the time at my cabin. It’s been so wonderful to be out of school and able to relax finally. At the same time, it’s been a bit overwhelming so far. The sound level is tough. Loud sounds cause my dizziness and nausea to increase. I’ve got super sensitive hearing as a symptom. Hopefully I’ll still be able to be myself and have some fun with my family this week!
Peace and healing, molly