Thank God That’s Over

Yes, Mayo was yesterday. And today I’m so incredibly thankful that it’s over now. I’m drained, physically and emotionally. I woke up at 5 AM, to get to the hospital by 8:15, only then to have a day of one thing after another, after another. We left around 3:30, still without having had lunch. Yes. You did the math correctly. That’s 7 straight hours of doctors. And not just regular doctors. No. These were the kind that don’t believe in chronic Lyme. Lovely… right?

 

But I’m getting ahead of myself.

 

My first appointment was the best of the three. I met with an ophthalmologist who had been in contact with my eye specialist about me. Turns out that he and my dad worked on the street around the same time in the 80’s at the hospital. It’s a small, small world! So in-between their exchanging of stories he took a look at my eyes. Long story short: He thinks my eyes are almost 100% better! The inflammation is barely discernable! What a miracle. Something went right. He is of the opinion that all of my intracranial pressure problems and optic nerve swelling is solely because of the Doxycycline I took for a little over a month in January/February which is from the family of Tetracycline antibiotics that is actually known to cause this reaction in some people. We knew this had been a possibility, but because so much time had passed since then most people we had seen weren’t comfortable with it. This is GREAT news however! It means I won’t have to have any kind of surgery to get a shunt placed. I keep reminding myself how GOOD this is! Thank God!

 

So, with that, onto my second appointment. It was with a Nurse Practitioner who was an Infectious Disease specialist in the Pediatrics and Adolescent Medicine department. I just had a bad feeling going into this one. Long-standing Lyme Disease and Infectious Disease Doctors don’t mix well. At all. But I took a few deep breaths, and tried to hold out for a positive experience. By this time I was starting to lose what energy I had managed to sum up for the first appointment. I was so tired. My head hurt, and my eyes hurt from when the last doctor had kept pushing on them to prove a point {inflammation}. Yeah, you read that correctly too.

 

As soon as she began talking to us however I knew this wouldn’t be a positive experience. She knew next to nothing about Lyme as a persistent infection. My friends know more about Lyme than she did! She asked me if I had pain in my knees, had ever had a rash, and insisted that she had never heard of Lyme being passed congenitally. She worked hard to get a timeline from us. And she wanted to know my symptoms. Well, I was prepared! Remember my symptom list that took me so long the night before the appointment? I pulled it out, and groaned internally as I saw the look on her face. My opinion: She didn’t believe it. Or me. She wanted “a current” list. So I insisted that I written that list just the night before. She breezily moved on.

 

I did feel bad for her. She wasn’t in a pleasant situation with her 17 year old patient and my mom throwing out our own research, facts, and small statistics. As a practitioner it can’t be easy when your patients have the upper hand when it comes to information about a disease, whether you believe them or not. She couldn’t understand how I was being treated with the Lyme test results I had. {I’m only positive on one band.} She hit a sore point with me too by bringing up school. I don’t care what she says, I do go to school even if it is in my own home. Don’t tell me I don’t. I’m sorry.

 

She went to talk with her doctor about my “situation”, and came back a short time later. They had decided that in their opinion it would be best if I could be retested for Lyme, Bartonella {I had showed her my rash and had said I was being treated for it.} and another infection called Ehrlichia. That way I could rule out Lyme and prevent unnecessary treatment if they came back negative. Where, at this point, my mom and I once again talked about the high chances of negative test results since I had been infected so long. I’m sure she thinks we’re all crazy. She was much more in favor of treating my fibromyalgia. That she knew about. But, I digress. Because of our own concerns, we chose to skip the Lyme blood test. If we redo it, I’d much rather do it through a lab my LLMD trusts. We did agree to do the two other tests though, and we should hear their results in a few days.

 

By this time I was just done. I didn’t want to deal with her anymore. I didn’t have it in me. I was glad to be done with that appointment. Only one more to go. Last but not least, on to my Neurology appointment. The doctor was nice enough. She too was very interested in my timeline, took extensive notes, and even examined me. She didn’t like the Lyme diagnosis either. But she took notice of my symptoms. She tested my muscle strengths, my reflexes, and my balance. And I assume they all came back pretty normal because she didn’t say a word about them. I felt as if I were shaking like a leaf the entire time she was testing me, but she said she didn’t feel it. I felt as if I teetered and tottered when I walked one foot in front of the other, but she didn’t seem to notice. Many of my symptoms like that are subjective.

 

She agreed with the first doctor, saying that she too was comfortable with the Doxy being the cause of my problems that sent me to Mayo in the first place. And she took the time to explain how this happened. Which we greatly appreciated! But she was concerned about all my other symptoms still not being resolved. Her recommendations? She wished I would retest all of my neurological and inner ear dizzy, balance, and sound issues. Perhaps they’ve gone away? Or gotten better? Or worse? She didn’t know. But she wanted them to be checked out again, just in case. I don’t really want to deal with that right now. What I went through six years ago when we found out I had a 50% deficit in my left inner ear was enough for me. I blocked most of it out and don’t remember it. So I don’t know if we’ll do that or not, but it was what she recommended. She also felt {like so many countless doctors before her…} that this could be a physical expression of depression and I could benefit from some counseling. Something may be wrong in my life that my body is trying to draw my attention towards, she said. But again, she didn’t know. And I almost cried. I say almost because I held it together enough until after we’d left her office.

 

I’m sick of people telling me I’ve got to be depressed because of what’s happening to me. I’m tired of nobody believing me when I describe my symptoms. Instead doctors have accused me of lying, of cheating test results, of making up symptoms, all to get out of school or to get attention. I swear that half of my pent up emotions are from doctors thinking these things. I almost cry just thinking about it. I know that I’m sick. Why can’t these doctors see it too? My family does. My friends do. My LLMD does, and I’m thanking God. I’m so blessed, so lucky to have doctors at home that believe me, that trust me, and that I trust to treat me. I need them right now. I need to continue healing, and to get better. Just as the Neurologist said, I don’t want to be stuck in a rut of ill health all my life. Those that think I would want that are the crazy ones, the insane ones. Who would choose this? Not me. I don’t choose it. I just make the best of it.

 

And so, I’m concentrating on the good news. This means I shouldn’t be put back on any of the Tetracycline antibiotics, but there are plenty more to choose from I think. We’ll keep an eye on my eyes, and if I feel my pressure going up again we’ll re-access. It may be another medication reaction, since we now how sensitive I am to them. But for now, I’m tired, I’m beat down, I’m sore, but I’m happy. I’m thankful that at least some good came out of yesterday’s ordeal.

 

Peace and healing, molly

 

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Author Unknown

Lyme Log

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.

 

Peace, molly

 

“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

Unhappily Awake. Wide Awake.

I can’t sleep. I want to be sleep. In fact, I wish I was sleeping right now. But no, I can’t sleep because the minute I turned out the light tonight I knew I wouldn’t be falling into a nice dream-infested sleep anytime soon.

 

The darkness was too dark. I was suddenly, unquestionably nauseous and as I lay there thinking I should get up, walk around, find some water, and probably a bucket, I couldn’t move. My legs ache so much I can’t lay on my side like I normally do because they’d be touching. My feet ache. My arms, my fingers, my back, they all ache with pain. My ears are ringing, and all I want is to fall asleep after a very, very long day.

 

But I’m here instead, with my little plastic bucket by my feet waiting to see if I’ll throw-up again. I summoned up the stamina to walk right down the ladder of my loft bed, fall onto my couch, and precede to throw-up. Not just once, but several times. I’ve only ever been this nauseous from the dizziness, enough to make me do that, one other time that I can recall. And that was about four years ago.

 

I was hoping, no I was praying, that things wouldn’t get this bad so quickly. Is this another Herxheimer reaction? If so, how long will it last? Will it get worse, or will it be better? My day went from good  (I made progress in Algebra II this afternoon!), to bad (Both my parents are sick with the Flu, and I’m doing my best to dodge it), to terrible tonight. And I doubt it’ll be getting any better because I’m decently sure that I just threw up at least some of my meds. Great.

 

Here I go, back up my ladder bucket-in-hand.

Thanks for the venting session :)

molly

 

“Sleep is like the unicorn – it is rumored to exist, but I doubt I will see any” ~Unknown

“Time Flies”, Really? Are You Sure About That?!

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 :)

 

Peace, molly

 

“The only reason for time is so that everything doesn’t happen at once.” ~ Albert Einstein

Ah, The Sweet Sound Of Silence.

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.

 

Peace, molly

 

“There are times when silence has the loudest voice.” ~Leroy Brownlow

I suppose It’s Time…

Well, it’s been a while since I wrote any “status-updates” hasn’t it? *sigh* Can you tell I love writing about that? But, that’s why I made this blog… so I suppose it’s time to address that for the week.

 

Here goes nothin’

 

Okay, so I’ve now graduated into 3 weeks of Lyme Disease treatments. Yay me!! That was yesterday I believe, or Monday night, one of the two. But, no matter, close enough cuts it for me!

 

Yesterday was also an important day in this whole progress because it was the first day I began taking my 2nd antibiotic. That was fun… I’m just thanking the heaven’s above that I actually remembered to add the new med into my pills the night before! I (feeling oh so very smart, I might add…) added the date and med into my amazing computer calendar, meaning that my computer scared me on the morning of by popping up with a reminder to take it. So, yes, I was feeling a bit smug, if a bit sheepish at jumping because of a pop-up. But, I’m a jumpy person so that’s not my own fault. Oh jeez, I’m digressing.

 

Back on topic!

 

Where was I? Oh yes, my 2nd antibiotic. Well, no bad reactions from it yet. Which is definitely a good thing! My doctor was a little worried about my heart rate after I began taking it, so lucky me, having a dad who used to be an EMT I’ve been under surveillance. So far so good. A normal, steady pulse. Which, is a little odd in itself. Normally my pulse is super fast, and my doctors are considering it a symptom of the Lyme.

 

So I have an appointment bright and early Friday morning to have an EKG done just in case. Very precautionary. I’ll have been on the med for three days beforehand. I’ve never had an EKG before. Do I sense a new adventure?!

 

And, before I get any questioning comments from my parents… no I am not always that enthusiastic. It’s actually been a really long week so far. And, it’s only Wednesday! Uh oh…. I’ve been so extremely fatigued I hardly want to admit it. The pain hasn’t been too bad, minimal I’d say. But it’s there. As is the dizziness which has actually increased a lot in the past week. Last night it was so bad that I didn’t feel like I could turn my head. Ack! 

 

I’ve also had a migraine on and off for the past week. It’s the 1st one in almost two months though! I’m so thrilled at that!! I used to have them weekly. I started seeing a chiropractor in the middle of last year and I still can’t believe the results I’ve been getting. So, needless to say I’m very excited to have an appointment tomorrow morning. Cross your fingers we can get rid of this one too!

 

Other symptoms that have cropped up include me breaking out into cold sweats still. That’s really not fun. I’ve also been pretty shaky all week. And, of course the nausea has been pretty bad. I think that’s being caused by the antibiotics. But, I always get more nauseous when my dizziness increases so who knows. 

 

I think that’s just about it. Otherwise, my new school semester started today. New classes included! I’ve got a new art course, economics, and chemistry now. I’ve also been working on a Girl Scout Leadership camp that my best friend and I were asked to plan/host. So that’s been fun. We’re still in the brain-storming phase though so we’ve got lots more work to do coming up here.

 

So there’s my update! Not the best news, but not too bad either I’d like to think. I’m not sure if I’ve gone into a Herx reaction or not yet, but we’ll see what my doctor has to say on Friday.

 

More later,

 

Peace, molly

 

“Don’t panic!” ~Douglas Adams

What, Monday again?

Hello all! What an interesting day this has been. I’ve never been a Monday person. Mondays seem to sneak up on when you’re most vulnerable and least expecting them….right after a wonderful weekend filled to the brim with excitement. And, then what? You wake up Monday morning absolutely hating your favorite new song that you decided to use as your alarm clock. Was that really smart, in hindsight? I think not.

I’m not sure if it’s the antibiotics starting to show some affect on the Lyme, or perhaps it’s just me feeling “sluggish” after having that cold that’s going around last week. I’m still blowing my nose, but I no longer feel the need to compulsively carry the Kleenex box around with me anymore. So, I’m feeling pretty good on that advancement. It could be winter catching up on me too though. Winter’s not so hot for me. My symptoms of widespread pain, dizziness, nausea, and migraines seem to worsen in the winter. But anyway, I don’t know what it is but I am just so tired. Unbelievably tired. I feel like I’ve been sleepwalking all day, not quite sleeping but not altogether awake either. Interesting feeling. I remember this feeling. And, I don’t like it.

This is the dreaded fatigue of Fibromyalgia and Chronic Fatigue Syndrome. This is one of the symptoms that I’ve fought for years. I was doing so well in the past months that I almost all but forgotten this feeling. (Easy to do with memory loss! An added benefit? Perhaps.) If you’ve experienced this you know what I’m talking about. If not, I’ll try to sum it up. It’s similar to having the flu, but different as well. (I know, I know, that doesn’t help much! It offers a comparison though.) I just feel drowsy, tired, unmotivated to get up and move (which only makes it worse, I know.) For me, it comes along with headaches and muscle aches. My legs ache to walk up and down the stairs, or if I sit for too long in one position. It’s fatigue, plain and simple.

So, for those of you who are asking me today how I’m feeling? My answer: “I’m tired! But, I’m doing alright. No worries there.”

Well, there’s my Lyme update for you all. Not the most pleasant to read. Shall we move on to better things? Ok, I shall. I’m so proud, I was only able to work for a few hours today but in those hours I feel like I accomplished so much! I spent pretty much all day writing, finishing up assignments and reading new ones. But, I knew I wanted to write one of the 8 written works I have due in two weeks at the end of my quarter. I’ve been given almost free-range to write whatever I want in my Creative Writing class. I’ve been so excited to start on them! And today I did.

I waited until my parents were out for a few hours with friends tonight, and I sat down at my computer. I had no idea what I was going to write, but a beginning sentence flew into my mind and I quickly wrote it down before I forgot it. From there, things just flowed. I had no clear idea of where the story was going until I starting typing. It was so much fun, so fulfilling to just sit down and write. Things I usually struggle with creating like names for characters, narrative styles, and story context all just came out. I still don’t know where the story came from that I wrote. But, I’m so proud of it anyways!

I think the best part of it all, was the reaction I got from my mom after she read it tonight. I, of course, can’t remember her exact words. But, she loved it. Just the look on her face as she read the first sentences made me smile! The best complement she gave me however was when she said it “gave her Goosebumps”. What more could I ask for?! Oh wait, I did get more. My dad read it and liked it too! And, I can’t even remember the last time my dad read a novel so I’m so happy he enjoyed it! Thanks for reading it mom & dad! I appreciate it, and hopefully I’ll have some more stories for you to look over this week.

So there’s my news of the day!

       molly

“Tug on anything at all and you will find it connected to everything else in the Universe!” ~ John Muir