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Yes. I have one word for you: Cupcakes! This is no laughing matter. Cupcakes are to be taken very, very seriously. Got it? This is important stuff we’re dealing with here!
Or, you can be like me and throw caution to the wind as you dare to enter the world of refined sugar and gluten-free baked treats. Come join me!
I woke up this morning and stifled a groan. I don’t wake up well. At all. My joints feel stiff, my muscles ache, my head is heavy, my eyes are dry and I’m usually starving from not eating much for dinner the night before. I always hate the first steps out of bed that capture the Bartonella pains in the soles of my feet.
I staggered out to the kitchen this morning, and that’s all I remember. Next thing I know I’m cutting a grapefruit, making toast, and spilling peanut butter. Who knows how much time had passed, but I didn’t care. I was hungry for a change. And I was thinking. Today, I would make cupcakes. Yes, it sounded like a wonderful idea!
Lately, I’ve coped with my bad days by spending more time in the kitchen. Whole days have gone by that I’ve accomplished little more than having dinner ready, or planning a new meal, or researching a new ingredient. I can’t seem to sit still, or concentrate on anything.
But cooking makes me happy. I’m creating something with my own two hands to share. It fills a gap in my life that I’d forgotten about until recently. And, for now I can still measure, pour, mix, chop, simmer, and season. My mind can still comprehend recipe instructions. I just can’t always eat. I’m working on that one. Baby steps, baby steps.
So today I made cupcakes!
More simple things to come.
Happy cooking, molly
Life is really simple, but we insist on making it complicated.
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!
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
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
There’s so much to say that I hardly know where to start. It’s been weeks since I felt well enough to post, and as usual I missed it. It’s so incredibly frustrating for me when I sit down to write and not an un-jumbled thought comes into my mind. So bear with me here as I attempt to shed some light on the past few weeks!
First, I’m so excited to tell you that my eye specialist gave us some AWESOME news in the middle of last month! I know, shame on me for forgetting to mention it. If it’s any consolation it was mentioned in my Twitter stream. Anyway, my eyes are almost 100% better!! No more Optic Nerve inflammation or ICP for me! Turns out that taking me off both the Doxy and recently the Levaquin did the trick! My dosages of Diamox which I’ve been on for months to keep a handle on the side-affects of ICP and lessen the raised levels have been cut in half. I have a follow-up appointment with the doctor in a few weeks where if things are still looking up the Diamox will be cut out of my treatment regimen. If I could jump without getting too dizzy, I’d jump for joy!
My appointment with my LLMD was around the same time last month. I handed her a list of my worst symptoms, and we agreed that I’d been herxing since starting back on antibiotics roughly a month before. From my own observations since then, I herxed constantly for around 6 weeks. A few of my biggest complaints were horrible brain fog, fatigue, pain, nausea and uncontrollable sudden acne breakouts.
For the nausea she explained that it was most likely being caused by toxins in my stomach/gut and no medications she gave me would help to a great extent. Great. So she suggested trying Reed’s Ginger Brew, a ginger ale with up to 26 grams of ginger jam-packed into a bottle. It’s helping! It seems to calm my stomach, wish it would give me my appetite back too though.
My brain fog she chalked up to toxins as well. In her words, “we’re killing things up there!”. Lovely, no? The phrase Toxic Overload comes to my mind. The acne is being caused by toxins too, trying to get out of my body through the skin. She recommended trying some herbal tinctures that other patients of hers were showing great results with. Our hopes are that they’ll reduce the fogginess and confusion and curb the daily headaches that have come back full-force. I haven’t ordered them yet, but we’re looking into them. I, of course, would be willing to give them a shot. Once we do get them, I’ll post their names.
My parents and I are also looking into investing in getting me a co-infection panel from IGeneX. My LLMD has been hinting at it for months, but the cost has always been a deterrent. If we knew that the test would for sure give us results, then of course it would be a no-brainer. But as it is the tests can’t guaranty that every infection will be discovered. Many false negatives show up. It’s up to the doctor to interpret. We suspect that I have Bartonella, but Babesia is also a possibility. Of course, it would be much better if I didn’t have any co-infections! But if I have them, it’s best to know so we can progress with treatment for them. Our plans are to get the panel later this month since I have another appointment coming up next week, I believe.
I’ve had some new symptoms appear lately. One of the most interesting is knee pain, for the very first time in my life! Knee pain and Lyme are “tied together” by the traditional definition of Lyme Disease. So I’m not sure what to make of it. I’m also having a lot of chest pains, and abdominal pain. My foot pain comes and goes, after not being a problem for months after Bartonella treatment. But most annoying and troublesome of all has been my growing food sensitivities.
I posted a few days ago that I had been “contaminated” after eating out. That means that gluten was somehow introduced into the dish, and my sensitive digestive tract didn’t like it one bit. I had a lovely gluten-free meal at Axel’s Bonfire last week with friends. I carefully questioned the waitress, and felt fine after eating it. Only to get slightly sick the next day. I didn’t know if it was from gluten contamination, the ice cream I’d eaten as desert, or from the MiraLAX I’d been taking for a week since finding out that my fiber supplement had gluten in. I voted MiraLAX and forgot about it. Then a few days later, after stopping the MiraLAX, I went out to eat for lunch with my mom. We carefully instructed the deli on how to prepare our salads, grabbed some ice tea, and a bag of potato chips each. A few hours later, we both knew we had a problem. By the time we had gotten home the pain was horrible. I spent a few hours in the bathroom that night and I’m still recovering. I feel so much better than that night, but I still get a stomach ache from eating just about anything at this point. Gluten-free or not, food has not been my friend lately.
Our best idea has been to get me tested for Celiac Disease. My mom was tested and was negative. But there’s still a possibility I have it. The trouble is, I’ve been almost completely gluten-free for months and to test for celiac you must be eating wheat products for at least a month beforehand. I’m not willing to do that at this point. It’s not worth it! So we’ll see what my LLMD has to say, but we desperately need some help with all these intolerances at my house now. Gluten, dairy, soy, eggs, and nuts if you count both my mom and I. Things are getting worse, what do we do? Between the nausea and the bloated discomfort I know is coming, eating is a challenge these days!
I’d like to end this post with something positive however. I’ve had a taste of normality folks, and it was beautiful. I’m not sure how I managed it, but last week I spent day, after day, with friends and family doing things I wouldn’t have been able to do only a week earlier. I had an absolute blast! It must have been 4 or 5 days in a row of eating out, playing in the park, movies, sleepovers, and shopping. My heart is brimming with enthusiasm over it. It’s all a blur in my mind, but the memories are sweet.
Peace and healing, molly
“The best thing about the future is that it comes one day at a time.” – Abraham Lincoln
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