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Today has been another Lyme-filled adventure. Let me tell you. I feel as if I got so much accomplished, and yet as I sit back thinking about the day I’m worried. Did I do too much today? It was a good day, so I obviously jumped at the chance to actually function instead of just going through the motions of another foggy day. I woke up early for an appointment with my eye specialist, finished and turned in a long-term art project, made lunch, did laundry and hung it outside to dry, and finished 2 lessons in math (which is a major accomplishment these days!). I did all of these things, and then I was up again, laughing and chatting away at dinner with only a short hour-long break in between. So I’m in a quandary. It feels awesome! But I have a nagging feeling as well that I’ll be paying for it tomorrow. We shall see.
On to my usual update however- I saw my eye specialist, and even got to take the “visual field test” again that I hate. It makes me so dizzy! You have to press a button every time you see a white flashing light in your peripheral vision while your head is in a box. Well, I always start seeing flashes that don’t look like the other other flashes, so I have to figure out which ones to press the button about! By the time they do both eyes I start wishing I had someplace to lie down. But, those test results were normal. They test to see if I’ve developed any blurry or blind spots because of the swelling in my optic nerve. So far, so good.
The rest of my appointment went so-so. I was also lucky enough to have to get dilated once again. She was disappointed not to see any further improvement in my swelling. But, there seems to be no more bleeding. So that’s at least a good sign that I interpreted out of the meeting. She’s not sure what to do with me at this point. We came to the decision (after she conferred with my LLMD) that the best route is to have me get another spinal tap so that she can see what my cranial/spinal fluid pressure is. If it’s still up, then we move on from there. If it’s going down, then that’s good news. One major complication however, I now have to stop taking my new medication that was keeping the pressure down.
I need to be off the medication for the spinal tap, as well as the spit test and the tilt table test my LLMD is ordering. It will skew the results. We’ve also recently discovered that it’s not recommended for people with adrenal dysfunctions to take this medication. It causes complications, and we believe it has caused those symptoms to flare up in me recently. So I’m not sure what symptoms will crop up again after I stop taking it now. The doctor told me though that it isn’t at all unusual for me to be experiencing disturbed vision side affects like I have been, and that they might increase. So far I’m seeing black spots, white spots, black sparkles, colored flashes, and increased eye floaters. Sometimes scary stuff, but so far they all seem to be coming and going. I’m just thankful nothing has been permanent, or long-lasting.
My LLMD called this afternoon just to check in with us and answer a few questions we had. She’s such a busy doctor, I always appreciate the time she’s able to take out of her day to address concerns. Sure, it takes days to get a hold of her, but she always seems to have sufficient answers for me. This time she wanted to let us know that she agreed with the spinal tap, and is aware of all that concerns that. She spoke with my specialist about it. She also suggested that she’d like me to see a neurologist that she refers patients to. I agreed that I’d be perfectly willing to do that, especially after I heard that he specializes in inflammation of the brain and has a specialized MRI that could be very beneficial to us at this point. So many of my symptoms are neuro that it just makes sense to me to see him. My LLMD also mentioned that right now she’s wondering if I need to get a port and get some IV meds into my system. If the neurologist finds anything, she’s counting that as fuel towards the fire to submit to the insurance company if the need arises. That’s far in the future for now, but it’s the first time she’s mentioned IV meds for me before. I’m not sure how I feel about it, it’s still sinking in.
One more important event to note- today marks 4 months of treatment for me! 4 long, busy, chaotic, and fast-flying months. As I look back there are times that went by so slowly: the horrible, painful herxs, and the 3 week long migraine that nothing could stop. Those times I could do without. But there have been some good times in the past 4 months as well. Some time of healing, and of recognition. Overall, I think it’s been an eventful start to my adventure. Please, keep visiting me as I continue following my path and blogging along the way!
Peace and healing, molly
“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” –Helen Keller
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
Hello all! Well, this is just a quick little update for you all, because as some of you have noticed, I’ve been missing for the past few weeks. I started a new antibiotic 2 weeks ago which about 12 days ago caused a major herx reaction. It’s been a miserable, and very long 2 weeks. It was the worst migraine I’ve ever had, and I’m still working on detoxing to get rid of it. I’ll explain in a few days, but I just wanted to give you all a little heads up as to what’s been going on.
Thanks for checking up on me!
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
I don’t know where the days went. It was Tuesday, and the next thing I know it’s Friday night and I’m exhausted. Well, that seems to point towards me having at least an exiting week. Which I did, I can verify that for ya. =)
But anyhow, lets see what did I do? There was a Girl Scout leader meeting that Em and I went to on Monday night. We publicized our camp a bit, so that was fun. And chatted, of course. There’s always more planning to be done. Let’s see what else…. Oh, ok I had a chiropractor appointment mid-week or so. That helped my migrates so much. Suddenly I could move my back freely and breath easier too. I’m just amazed every time I go back. My headaches are much improved from this time last week. I’m, needless to say, happy about that. Then I had a few days of internet-inactivity/mind-numbing frustration. It’s up and running now… but it and I haven’t found a mutual appreciation yet. We’re working on it…
Then Tara had a dress-fitting for the wedding. That was so fun! A little crazy and stressful perhaps, but it was nice. Tara brought over the dress she ended up buying this afternoon though. It’s so beautiful!! I can’t wait to see it on her. It’s absolutely perfect for her, a mix of everything she wanted. And, it’s vintage! She’s thrilled, it was so fun seeing her face as she showed it to me. I got to try out my bridesmaid dress too, which I love! It’ll be green and it’s so cute. I’m happy with it. Both Chris and Tara thought I’d like it. They were right!
And tonight, my goodness was there excitement. I was able to hang out with Dan and Gracia at the mall for a few hours. To be perfectly honest, I was just relieved to be out of my house! But, it’s been over a month since I saw Gracia last. And that’s a long time not to see your best friend! So it was awesome to see them, I was so excited I barely got any work done today (but shhhh….). Ahhh, normality is truly bliss.
I think overall, it was a great week but it was a rough one. The rain had me nearly couch-ridden for a few days there. Something about the change in humidity I think, it always makes me hurt so much more. I’ve been much dizzier, and nauseous this week. I’m started taking my anti-nausea meds every day. I’m just dragging, and moving slower than I’d like. I keep noticing how tired I am. I’ve also discovered that blurry vision is my newest herx symptom. That explains why I was having such a problem finding the correct contact prescription! It felt like my eyes kept changing, and turns out they probably were. Greaaat. And the blurriness is just making me more dizzy, which makes me more nauseous. It’s just a cycle that I can’t seem to catch the end of.
Here’s hoping for a restful weekend!
“Sometimes in our confusion, we see not the world as it is, but the world though eyes blurred by the mind.” ~ Unknown
Has it really only been a week? God, it feels like so much longer! Not only have we been struggling with our internet connectivity while we switch providers, but on top of that my computer completely crashed. It’s Murphy’s Law in action. I swear!
I still don’t know what happened to my computer, and I’m not sure that I want to. It’s working now. I’m just thankful for that! I do know however that it took my dad hours on the phone over the week with Dell as well as a weekend of reloading every piece of software I use on a daily basis on a connection not much faster than dial-up (read that as Extremely Time Consuming!!!) I think I finally loaded the last program this afternoon. But seriously, I always joke around with my dad that he couldn’t live a day without his computer…. yeah… somehow I don’t find that so funny anymore!
I had a few days there that I barely knew what do do with myself. I couldn’t check my email, talk on IM, listen to my music, go to school, or blog. Or the million other things I felt like I should be doing. It was so bizarre! I seriously did feel so unconnected with life. I wasn’t bored, just impatient. And yet, it was only a day or so that I had no computer. I fear I may have been overreacting. But, alas, my perception is biased now that I have it back and I’m blogging, listening to the new Fray CD (Which is awesome!! Thanks Em!), responding to emails, and checking my Facebook. Yep, that’s right guys I’m even multitasking. :)
It’s good to be back though. I missed blogging. I think it’s becoming somewhat of a release, as well as some guaranteed time for writing.
I was able to fill my time this weekend though. It encompassed a lot of Girl Scout planning. This camp we’re planning now is actually taking shape. I’m getting so excited! And some much-needed family time as well. It was so fun, Matt, Becky, Chris, and Tara were all able to come over for a late lunch Saturday. It was great to catch up with everyone. And, Tara was sweet enough to ask me to be her Bridesmaid this September. I’m so excited about that too! Now, I know that the time will absolutely fly by until then.
Yesterday was nice too. I spent the morning teaching preschool, and the afternoon painting for an art assignment. It’s been so long since I painted last, I really enjoyed it! And, surprisingly the painting didn’t turn out too bad. Last week I spent a day creating some more fused plastic bracelets, which turned out so cool! So I’ve been exercising quite a lot of creativity lately. Probably good for me, huh?
As far as a health update goes, I’m having a flair at the moment. I woke up this morning knowing that it would be a painful day. The rain is definitely not helping. But, I’m managing.
More tomorrow. If I remember I’ll post a few pictures of those bracelets :)
“The only reason for time is so that everything doesn’t happen at once.” ~ Albert Einstein
Well, I had an eye-opening experience this afternoon. I love those, I really do. They’re such rare experiences and yet they shouldn’t be, they really shouldn’t be. It’s so clear in my mind I had to write about it. I was resting this afternoon after a long morning when it happened. I had English, and Art, and Chemistry all swirling around in my brain, and to add Economics on top of that was a bit much on a day where I was testing out new contacts and Herxing (needless to say). So there I was watching TV, or at least trying to. I moved from the chair to the bed. Switched movies at least five times. And, I still couldn’t find a comfortable position or concentrate on anything to watch. I was just restless, in pain, and oh so fatigued.
Finally, I turned to my favorite movie: Alfred Hitchcock’s Rear Window. But, that’s beside the point. As I was lying there listening to the voices of Jimmy Stewart and Grace Kelly argue about the merits of people being able to live anywhere they wanted, I suddenly realized that it was quiet. I mean, sure there were the voices on the TV and the dog breathing loudly in the hallway and the sounds of life outside the window. But, in my head it was quiet.
All I could hear was the silence. It wasn’t deafening. It was sweet. It was peaceful. It was absolute bliss for a few moments. The high-pitched ringing that had been echoing through my skull for hours had stopped. I remember simply smiling, until I realized that I didn’t know how long it had been stopped for. What if it had been gone for an hour already and I, too busy trying to tune it out, had missed the joyous occasion?
And so, my eye-opening experience comes into play now. I realized that for the past few days, maybe even weeks, I’ve been experiencing new symptoms but I’d been blocking them out. I noticed them, and I lived with them, but I hadn’t been enough in-tune with my body. That’s something I need to work on. I need to stay grounded. I need to not live outside my body looking in, but actually live in it. And that, my friends will be hard. I fully admit that. We’ll see how I do with my renewed realization in the next few days.
More to come.
“There are times when silence has the loudest voice.” ~Leroy Brownlow