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That only sounds a little menacing! As I promised, here’s my update from my monthly LLMD appointment. It was a few days ago, I admit. But I was thoroughly exhausted that night as well as yesterday. I blew off some steam in the meantime by sewing up my own little storm. :) And what did I make? A headband that turned out to be too small and a beautiful new pillow! If I’m feeling ambitious I’ll see if I can post a photo later.
Anyway, back to my update. It was a very busy, and time sensitive schedule that day. First my dad rushed home to take me to my eye doctor. It was suggested (by just about everyone) that I see him so that he could dilate my eyes and check them out a bit closer. He thought he might be able to see if there was something causing the double vision of late. Turns out he did find some signs of inflammation in my eyes and some small hemorrhages.
His exact words were: “ I saw some small hemorrhages, but it’s nothing major. Lets just make sure she comes in for another dilation in a few weeks to keep an eye on it.”
Hmmm… as I told my dad, I don’t associate “nothing major” with the word “hemorrhage”! It seems to me to be something that’s not at all good and should be avoided. But, what to I know? So, I go back in two weeks and we’ll see what happens. In the meantime we’re getting a second opinion by a Lyme-literate optometrist recommended by my LLMD when I told her what he had said. Which, leads me into the second phase of that time-crunched day….
After that appointment my dad rushed me downtown where he dropped me off at my LLMD’s office to meet my mom while he went on to a meeting. And my mom and I preceded to meet with my LLMD. (Very synchronized!) We talked about my latest symptoms and discussed my options for my treatment plan.
She wants me to cut down (majorly) on my refined sugars and carbs. And that means a switch to rice pasta, and no more French bread. Eating those foods allows yeast a hospitable environment in my body since I’m taking so many antibiotics. I’ve got be careful about my yeast levels since the antibiotics are killing off not just the bad bacteria, but the beneficial ones as well.
Since I’ve been blacking out pretty frequently after I stand up, she’s suggested that I need some additional adrenal support as well. So I’ll be up-ing my intake of vitamin C (Smoothies!!) and I’ve begun drinking licorice root tea. It’s not bad; it’s got a very raw taste at first and then suddenly it’s cooling and coats your mouth and throat. I think it takes some getting used to!
I’m also going to begin taking Samento every day. I don’t know much about it, so I’ll let you know as soon as I do. What I know so far is that it’s a natural antibiotic that has been shown to fight Lyme. Sounds good so far! I just have to be careful to start with small dosages and work my way up to higher ones slowly because it can cause herxs as well. My LLMD has also requested that I start taking a lipoic acid supplement every day. We’re looking into that this weekend.
My list of everyday supplements, medications, vitamins, and practices is getting longer! That’s for sure. I’m struggling to keep track of it all, but so far I think I’m doing pretty good.
“Everything is getting better everyday.”
Hey everyone! It has been so long since I felt able to write, it’s good to be finally back to normal. I’ve missed this nightly ritual in the past weeks. And, let me just thank all those that continued to check up on me while I was “missing in action”! As I’m sure most of you know, or have presumed, I had a pretty nasty and scary herx reaction that lasted 3 weeks. I’m much better now, and have been steadily improving for a week.
It was horrible though. I had heard and read about other’s herxs but until you’ve had a bad (*read that as mind numbingly awful and unbelievably painful) one yourself, it’s truly hard to appreciate the meaning of the words. But, I survived. Granted, it took a month’s supply of migraine meds, equal amounts of pain killers, a trip to the ER, several visits to my chiropractor, as well as a new (lesser) dosage of antibiotics and a heck of a lot of detoxing. But I did it! Thanks to my amazing parents who were there for me the entire time. I couldn’t have done it without them.
My latest road bump as been double vision. It’s been, oh almost 3 weeks now (do I sense a pattern??) I think. It started during the herx and we just assumed it was part of the migraine. But that didn’t make sense when the migraine finally settled down and I was still seeing people with 2 heads and walking into walls. Thinking it over it actually started beforehand with blurry vision, that gradually became double. It’s been tough, especially with my already-present vestibular disorder that causes dizziness. Let’s hope this doesn’t last too much longer… But seriously I have been improving. This week I’ve been able to keep the eye patch-wearing to a minimal amount and have discovered what triggers it so I’m better able to stave it off. I’ve got an appointment with my LLMD (Lyme Literate Medical Doctor) this week, so we’ll see what she has to say about it. Nice photo though huh? I’m thinking the black is a little boring…. I’ll see what I can do about decorating it :) It needs something…. thoughts anyone? I’m thinking of painting one of those dizzying spirals on it so that everyone who looks at me gets just a wee bit dizzy… fun, no?!
In other news, I’ve been dizzy and unbalanced (did I say that?) enough to break out a cane. We didn’t have one that fit me anymore so I borrowed my brother’s extra one. It’s nice to have, but I hate using it. I always did. For one thing, it’s beyond me on how you walk with them. I mean, really, it’s harder than it looks! I’m also beginning to get more and more into the book Cure Unknown. My LLMD suggested I read it as soon as my diagnosis was confirmed, but I just haven’t been too excited about it until now. I’ve heard enough about it though to keep me reading, little pieces at a time. It’s finally all clicking in and making sense. It’s actually a pretty good book; I’m glad we bought it. It’s a good reference. As soon as I’m done with it it’ll be my mom’s turn.
More good news, it’s my spring break this week! I’ve got a million things to do and only a few days to do them in. We’ll see how that works out. It will give me the time to get back my blog however!
“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
Anyone else out there using Lyme Log? I just signed up and it looks awesome! You imput your symptoms, medications, and activities that you want to log and it sorts all the info into graphs and charts over time. It even gives you an option to record whether of not the day is part of a herx. This is perfect, and I think it’s just what I need. I hate keeping track of my symptoms, and this seems like a quick, easy, and painless way to do it every night.
It took me a while to figure out they’re scoring system, until I realized that I needed parts of it reversed. Great. What does that tell you? But come on people, pain is ranked on a 1-10 scale with 10 being the highest isn’t it? That’s how I’ve always done it. Luckily they have it set up so that confused little people like me can reverse it. Didn’t I tell you this looked awesome?
I’m hoping that my doctor will be able to access this at her office. That way all my logged symptoms will be right there!
I’m off to bed for tonight though. It was a long, tough day to get through today. After last night, of course it would be right? Oh, and I started a new medication today. Now I’m taking Levaquin to help fight my co-infection of bartonella. Anyone else taking this med? I’d love to hear from you if you are, or have in the past. I’m somewhat nervous about it because my pain increased horribly only hours after taking my first dose this morning. We’ll see what happens. I’ll keep you all posted.
“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” ~ Lance Armstrong
Ah, another week completed. And I survived it folks. Week two on antibiotics for my Chronic Lyme Disease has drawn to a close, and what a crazy week it was!
The only reason I’m able to tell when I’ve finished up another week is because I run out of days with pills in them in my 7-day pill container. I love this thing! It has seriously made my life so much easier. I no longer have to open up who knows how many bottles each night, and I’m actually remembering to take my morning medications which is definitely a plus!
I’m still working on getting a routine down that will work for me. I absolutely hate set schedules and times, but I’ve discovered over the years that if I don’t work on creating one for myself I really do suffer. I’ll forget to take meds or supplements, or I’ll forget that we actually have an exercise bike in the basement that I could be riding, or that I have English homework due on Friday. So, instead I’m teaching myself to develop routines that work for me. I take my meds at the same time, I check my classes online every day and work on them in a certain order, and I also have times during the day in which I just know that I need to stop working and just rest. (I’m still working on that whole exercise bike thing…) As much as I hate them, I know I need them. It’s a process… acceptance is the first step, right?
So to continue working things out I’ve added my meds and my supplements to my daily computer calendar so it will actually remind me to take them at a certain time if I set it to. Anyone guessed yet that I haven’t set it quite yet? I’m a bit of a stubborn person… and I tend to adopt the attitude of “I’ll do it myself!!”. For better, or for worse, we shall see.
I’m feeling alright, overall. Some odd symptoms are sneaking back now and again, but so far they’ve been manageable. I’ve still been able to work on my course work for school, I’m really happy about that. This week is the final week of the semester however, so I’m looking forward to the long weekend we’ve got after Friday afternoon. I’ve got plenty of Girl Scouts work to catch up on, and some books I’m dying to just settle down and read for a few hours.
And, who’s not excited about inauguration day?! It’s so soon and yet so far away. I wish I could say I wanted the time to fly by, but I’d really rather it didn’t so I’ll have some time to breathe and finish up my finals projects and papers!
But, I’ll not get a head of myself. I really can’t wait for tomorrow morning though. I’ll be up bright and early tomorrow for an acupuncture appointment. I’ve been looking forward to it for weeks. It’s been so long since my last appointment that I can’t even remember when it was! (I’m restraining myself from further comment…)
Anyway, ’till tomorrow,
“Wonder is the beginning of wisdom.” ~Greek Proverb