Oh, The Irony! Call Me Kooky, But...

Oh, the irony:  

On my most horrible days, I am a shell of the person I want to be.  I feel useless because I don't have enough energy to do anything.  Because my husband has to leave me in the car while he runs into the store and does all the grocery shopping.  Because I have to lay down as soon as we get home while my husband puts everything away and then makes all of our meals.  Because I am in too much pain to enjoy doing anything and I feel like my tears are a burden to my husband.  I despise feeling useless.  It hurts so much that there are so many of these times.  I feel like so much time is being stolen from me.

So I stop myself.  And I try to convince myself that time isn't being stolen.  Because it hurts too much to think that it is; that I'm 27 years old and I spend quite a few days like this.  I convince myself that I will not let damn bacteria take time away from me.  There may be times that I am unwell, sure.  But I will not be useless during that time.  I will use that time.

So I ask myself, "what am I supposed to take away from this time?  What is it that I'm supposed to learn?"  I think I'll never stop figuring that out, and I think that when I am well again and I look back at this time in hindsight, it'll be clearer.  But I feel like the tears that I shed during the times I feel useless tell me a lot about what I need to learn and how I'm supposed to use this time...


When I stop and think about it, for years I have been terrified of illness.  One of my biggest obsessions with my Obsessive Compulsive Disorder has been over illness (obsessing about it and trying to prevent it through compulsions).  How ironic that all this time I was carrying a stealthy disease.

I continually ask myself why this (Lyme) is happening to me.  The other day I was at the gym with Ty, trying to get in a short workout even though I didn't feel well, and I literally started cursing Lyme out loud with every step I took.  First I started feeling angry because I was feeling weak and exhausted and thought "why??"  And that anger turned into "how do you like all this oxygen in my blood, huh?  Oh, you don't like that?  You don't like seeing me build strength?  Well screw you!"  Tyler laughed and then we both laughed and there's a possibility that those words are a toned down version of what actually happened.  And it made me feel good to talk to the blasted bacteria and tell them that I. Will. Win.

I've always been a strong "everything happens for a reason" believer, but with Lyme I keep finding that I'm falling short (which doesn't make me much of a believer, apparently).  I only fall short sometimes, I suppose.  When I'm feeling well, it's much easier to feel hopeful and to look toward the future with optimism and hope and think "yes, I will be well again!"  When I'm not feeling well, I find that I'm trapped in a hole, wondering how I got there and how I'm supposed to get out, thinking "how much longer am I going to feel like this?"  I think it's the uncertainty of treatment and remission that drives me over the edge.  There are no answers with Lyme.  I'm a control freak, and I just want to know!!  I want to know what kinds of treatment I will continue to endure, how long it will take, how much money it will cost, how Lyme will impact the children we have, if I can get this in to remission and keep it that way...  I just want to know.

As the saying goes, "the ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."  These words haunt me lately.  I feel I am failing as a human when I am angry at Lyme.  What does it say about me, that I have such feelings of anger and hopelessness about this disease sometimes?  I feel like a hypocrite.  I can tell other people that everything happens for a reason, but I am having a very hard time seeing the reasoning for this illness.  What a crock.

But if I look deeply at the kind of person that I am, from every angle, it kind of makes sense again.  My flaws are that I worry.  That I obsess.  That I feel the need to have complete control.  That I trust no one anymore.  That my faith can be shaken when everything comes crumbling down.  That I am so preoccupied with worrying about what will be, that I am not enjoying what is.

My strengths are my compassion.  My understanding.  My desire to reach out to others.  Writing how I feel through music.  Recognizing other peoples' pain and finding a way to try to relieve it.  Loving others to a fault.

Both of those lists have been the way that I have been for as long as I can remember.  And it all starts to make sense to me.  The things that can bring me down are my weaknesses, and my strengths are my tools that I have been given to overcome them (seems obvious, right?).  I have every intention of working on my weaknesses so that whether this is the only life we live or not, I live it better.  "Better" means letting go of expectations, worries, flaws...  Living with what is and being in the moment.  That doesn't mean that thinking about, preparing for, and looking forward to the future are bad things.  That means that for me, I can't obsess about what the future might hold.  I have to focus on right now, on getting better, on continuing to be a loving person through hardships.  We all have hardships.  Life is about helping to make someone else's hard times a little more bearable, no matter what you believe is the reason for those hard times.

So why me?  Because I have something to learn through this (I say "through this" and not "from this," because I think it will be a continual journey).  And perhaps I have something to teach through this.

If there are things that I'm learning, it's that on the other side of hell there is hope.

It's that I am stronger than I think I am.

It's that I'm seeing a side of my husband that I've never seen before- a new kind of understanding, compassion, and caretaking (Good Lord, I love you so much).

It's that I can get so fired up about something that I'll do anything to fight for it.  Who are we if we sit idly and let the things that hurt us continue to hurt others?

It's that I cannot live in fear.  Above all, I cannot live in fear.  I'm truly starting to feel the karmic circle here for me with Lyme.  Isn't it ironic that my whole life I have lived in fear of illness?  Most of my Obsessive-Compulsive-Disorder is centered around fear of and the warding off of illness.  Is that not ironic??

I guess I feel like I'm getting somewhere; if not actually improved health, at least an improved understanding of my spiritual role in it??  I do think that overall my health is improving, though.

It's time to listen to the messages that life sends us.  Listen to the people that are strategically placed into our lives, listen to the happenings that take place.  Call me kooky, but I think that otherwise, it is all in vain.



Update:

Things have continued to be up and down, and up and down since the last time I wrote.  I had an appointment on May 4th, which I was anxious about, as I had had an Echocardiogram (ultrasound of the heart) a couple weeks prior and knew I would be getting the results.  Turns out, that was a two second conversation consisting of "your echocardiogram was normal..."  Hallelujah!  This rules out structural abnormalities of the heart.  The hospital failed to do the correct EKG that day, which possibly turned out to be a blessing in disguise.  My doctor had ordered a 30 minute EKG that was supposed to be done that day as well, which is pointless if I'm not having symptoms in those 30 minutes (and I likely wouldn't have).  She decided it would be more effective for me to have a holter monitor and wear it for two days anyway.  I got it attached yesterday and have it removed tomorrow.  I had some palpitations and pounding of the heart during activities where your heart shouldn't be pounding, or at rest, so I'm hoping it's picking up some "good" stuff.  The goal is to determine if the symptoms I'm having are from something benign or harmful.  Prayers for something benign, please.

Feeling Wired

My blood pressure was 80/60 again.  Woof.  I'm staying on the Ceftin, Zithromax, Rifampin, and Bartonella tincture (and the host of supplements and the like).  My doctor reemphasized that if she had it her way, I'd be treating with the Bicillin injections (if you recall, they were a couple thousand dollars and my insurance won't touch it with a ten foot pole, which is why I'm on the oral antibiotics instead).  She said she thinks that eventually that's what I'll need in order to kick this to the curb...  Oye.

She really wants me to see the cardiologist for a consultation, so that's in the works.

I went in to have my first IV hydration on the 6th (infused with vitamins), in hopes that it would make me feel remarkably better.  I did seem to have a great weekend, but it was unclear to me as to whether it may have been the hydration helping, or whether it was the natural cycle of the bacteria doing it's thing.  When I woke up that morning before I went in, I had already thought "well this is going to be a better day..."  So I'm not sure.  I may try it again in the middle of the next herx or something.

I've still been having muscle cramps every so often, that usually strike me at night or in the middle of the night.  A few weeks ago they were absolutely horrible...  Writhing, screaming, tears...  Tyler was starting to get used to it and talked me through it saying "you know this is just the Lyme.  You know this will be over in a few minutes...  It will end."  It was comforting to hear those reminders.  This week, I was startled from sleep at 3:30am three separate times due to unbelievable muscle cramps, and I had a fourth one this morning when I was taking Kea out.  These times, they didn't bring me to tears for once- so that's an improvement!

I'll keep you posted on the results of the holter monitor (two day EKG monitor) that I'm wearing as I get them at the beginning of June.




Thank you for taking the time to read <3

Bartonella Herx

Last time I posted I was doing better than February, but was feeling things slip away a little bit again.  That continued throughout March.  It wasn't horrible, but there was a definite feeling of a backward slide.  Things got a lot worse the last week in March.  I had terrible hand/arm pain, major muscle cramps, internal vibrations and tremors, head/neck/jaw pain, headaches/migraines...


Symptoms:  

When I tell someone my hand really hurts, like really hurts, I don't doubt that it's hard to understand.  It's a hand...  Is it broken?  Sprained?  Injured in any way?  No?  Then it probably can't hurt that bad.

Jiminy Cricket...  Yes it can.  And so can any other random area of my body- isolated or not.  Lyme and coinfections do crazy things.  This actually seems to be Bartonella for me- a coinfection of Lyme, that often causes more neurological symptoms.

The last week in March, I had horrible nerve pain in my hand- sometimes throbbing/radiating pain, sometimes sharp, stabbing, or shooting pains, sometimes pain in my bones- it traveled, migrated, and changed constantly, but it was pretty constant pain for a good week.  Then it started to travel up my arm and up to my shoulder.  Sometimes radiating from hand to shoulder and sometimes stopping in an isolated spot and just about bringing me to my knees.  There was an overall weakness in that hand & arm as well, and I started to notice that when I was accompanying my students on the piano, I'd drop my right hand out and try to continue just with my left hand, filling in as many missing pieces as I could with one hand.
Then a new symptom came up.  The skin on my hand, over a knuckle that was particularly painful, started to hurt to touch.  That feeling crept up my arm, all the way to my shoulder.  It wasn't the skin over my entire arm and shoulder.  It followed a particular path- the particular path that I could feel the pain follow when it would gravitate from my hand to my shoulder.  It was very strange- almost like it was following a nerve exactly.  The skin was so painful to touch, just along that line.  This was new for me.  I'd read about other Lymie's having this symptom, and I'd never been able to imagine what it was like.  EXCEPT, oddly enough, once I was experiencing it, it felt familiar to me.  Although it felt like a new symptom for me in relation to Lyme, I was indeed familiar with it.  I realized that every single time I get really ill, like with the flu or something, my skin hurts.  It's been that way for years, and I literally thought that was just the way people felt when they were sick. And now I know...  Apparently that's not normal...  lol.
It's interesting how all these months so far, I've never known how to distinguish what might be a herx from just the regular ups and downs and flares of Lyme and coinfections, but for whatever reason, that last week in March, I thought "this has got to be a herx."  I've been in so much worse pain than that, and have had so much more severe symptoms than that, but it felt a little different, and perhaps it was the new symptom in conjunction with the pain that lead me to feel that way.  I think it's also how unrelenting it is.  I think regular symptoms are up and down a lot more, but when I'm herxing, it's pretty severe, for a longer period of time.  When I saw my doctor this week, I laid out how March looked, simply stating the facts.  She said "well, it sounds like you've been herxing quite a bit."  She'd never said that to me before either, so I thought it was interesting we had the same thoughts.

I also had a really bad episode of severe muscle cramps on the right side of my upper body.  Tyler was with me this time, and it legitimately scared him to see it happening.  He watched me cry, scream, and squirm in agony and didn't know what to do or how to help : - ( I felt so awful.  Right before this one started, I reached behind me to grab something with my right arm, and I lost control of my arm.  It was just kind of heavy.  Then the Charlie horse started in one muscle in my right lat, and spread across my whole side, back, and shoulder, leaving me in a state where I was unable to move- except in a hysterical way- and crying in pain and desperation for it to end.  That one lasted a good five minutes.  It was miserable.  When it finally stopped, the whole right side of my body was weak and exhausted because the cramps were so intense.  I had to lay there for another 10 minutes or so just to recover before I could try to stand up and carry on my day.  Those muscles were sore the rest of the day, and my right hand remained weak.

This happened again last night.  I was walking back to our front door with Kea, and she got spooked and started barking (her serious, deep and roaring bark), which in turn spooked me.  Startled, I jumped, and that quick flex of my lat was all it took to set off another cramp.  I fell to the ground when I got in the house, crying in pain until it passed.  I've been noticing that although sometimes it's seemingly random, it's been happening a lot when I flex a muscle suddenly.  It doesn't always go into a full-blown excruciating cramp, but it seems to start one more easily.

I had a lot of moments when I'd be out running errands and would limp my way through them.  It's so amazing how the pain comes and goes, and how I'm sure to an outsider it appears crazy- that I'm not injured, and I look fine, but when the pain settles in my hips, legs, feet, or back, it's so painful that I cannot walk without a limp.  If I'm at the grocery store, I use the shopping cart as a crutch.  Nothing makes you feel more crazy than entering the store without a limp, and leaving with one (or vice versa)...  I'm sure the employees think I'm crazy in the head.


Thoughts:  

It's interesting how many strangers have randomly told me "well, you're healthy!" or "good thing you're healthy!" or "that's because you're healthy..." or SOMETHING along those lines recently.  I'm probably only aware of it because it strikes a different chord in me when I hear that now.  Let me tell you, do not judge a book by it's cover.  I know this seems silly.  Perfect strangers are saying harmless things that shouldn't bother me, and I'm not saying "don't say things like this to strangers...  you don't know!"  That is indeed, silly.  I'm just saying it's a definite reminder not to judge a book by its cover.
People look at me and because I'm a young, [seemingly] fit, blonde female, so many assumptions are made.  So many.  Instantly.  I don't doubt that we make instant assumptions about others all the time.  It's human nature.  We judge people constantly, whether we're aware of it or not.  It's both nice to hear that people think I look healthy (I'm sure if I looked as ill as I felt, that would do a separate number on my psyche), and it drives me up the wall.
The woman who did our taxes skipped over "medical bills," because she made an assumption.  Tyler and I stopped her and said, "perhaps we should look at that."  She said "oh no, you'd have to be seriously ill for that to apply to you."  And I kind of laughed under my breath.  She said "I hope neither of you are that ill.  Your bills would have to be around $10,000..." and we looked at each other with kind of an "eff it, it's not worth the battle" face, and let it go.  The only reason our bills didn't add up to $10,000, was because I didn't start treating until August, FYI.
Try not to make assumptions.  I'm trying not to.

It was exactly a year ago today that things took a turn for the worse with my health.   Up until that point, I had a few symptoms that were pretty constant (joint pain, for one), but others would come and go in episodes.
But April 11, 2014, a bad episode began.  I had tremors, chest pain, heart palpitations, shortness of breath, dizziness, weakness, cognitive difficulties, shooting pain, numbness & tingling...  A plethora of symptoms, every one of them with extreme severity (I didn't drive), and I had no idea what was wrong with me.  Urgent care did tests and EKG's, and told me nothing was wrong with me.  But the reason this was a turning point is because since this day a year ago, the symptoms stopped coming in waves, they became constant.  I suppose I should be thankful, because this is what lead me to push  for an answer.

Treatment:  

I am remaining on the three antibiotics (Ceftin, Zithromax, Rifampin), and we added in an herbal tincture for Bartonella again.  I took this tincture last September as well, before I started any antibiotics.  Since my neurological symptoms recently increased again, my doctor wanted to hit Bartonella (coinfection) a little harder.  I'm starting with a quarter dropper, twice daily, and will increase to half a dropper, twice daily if I don't herx from it too badly.  I had a major increase in palpitations for a couple of days after starting it, but it seems to have settled down again.

My doctor gave me a good magnesium supplement to see if it helps with the crazy muscle spasms at all.  Lyme and coinfections seriously deplete vitamin and mineral levels, so it could be the result of a pretty good magnesium deficiency.  I hope that's what it is.

Good news- My blood pressure was 100/60 again at my appointment this week, a continued increase from 80/40 for sure!  Woo hoo!

Besides the chest pain, palpitations, shortness of breath, etc., my doctor listened really closely to my heart and heard an arrhythmia.  She wasn't too concerned, but it's there.  She sent in an order again for me to get an EKG and Echocardiogram to check things out (I had to cancel my previous cardiology appointment).  Probably just symptoms from Lyme or Bartonella, but we will find out for sure.


Lyme Disease Challenge:  
Thank you to everyone who's partaken in the Lyme Disease Challenge!  It's pretty amazing how many people the campaign has reached and how much money has been raised to go towards research.  It's also amazing how much attention Lyme is starting to get in the media.  This week, Dr. Oz did a segment on Lyme, and did the Lyme Disease Challenge- what a way to raise awareness. My heart goes out to Avril Lavigne, who recently came out about the fact that she's been fighting Lyme since last year.  It's unfortunate that it takes a celebrity being ill to get Lyme some attention, but I'm thankful for Avril choosing to be so open about it to educate the public.  Thank you, Avril!!

It's never too late to take the challenge.  All it takes is a picture of yourself taking a bite out of a lime, with one fact about Lyme Disease.  That picture and fact are guaranteed to reach quite a bit of people who have never even heard of Lyme- and that's the point : - )

It's Time For Some Good News

Wow, have things changed since January.  I was not in a good physical state when I wrote my last entry.  I was miserable.  I was also worried that adding in a 3rd antibiotic (Rifampin) was going to throw me into a worse state if I herxed from it.  Amazingly, it didn't.  It did the opposite.  Days after I started taking it, symptoms started decreasing- some of them almost disappearing entirely.  This disappearing act happened when I started Zithromax and Ceftin back in October as well...  It was like the calm before the storm.  I felt so much better for a few days and then things got progressively worse over the next 3 months.  So although I was feeling really well after starting the Rifampin at the beginning of February, I tried to brace myself for what might be coming...  And then a week went by, and then two, and then three...  And I was realizing that it was an upward trend that was likely going to continue!

February was overall the best month I have had in about a year.  I haven't had that much energy, clarity, or freedom from pain in a long time.  It was amazing.  I went from driving 3 minutes to the grocery store and having to sit in the car for 20 to muster up energy before I went inside, then having to sit in the car for 20 before I drove home, to working out again (for the first time since June).

Currently, I'm not doing as well as I was in February, but it's so significantly better than January that it still feels great.  On a day that I was refilling my pill organizer (yes, I'm 80 years old), I messed up and missed a dose of antibiotics.  I realized the next day, when I woke with the same horrible head, neck, and jaw pain that I know so well, and then rechecked my organizer.  Holy moly, does missing one dose catch up with me.  Symptoms start creeping back in at their leisure (twitches, muscle spasms and Charlie horses that take over the whole right side of my body, tremors, internal tremors and vibrations, stabbing pain from back through chest, nerve pain- anywhere and everywhere, shortness of breath, chest pain, zone-outs, fatigue).  So I've been playing catch up for the last few weeks, and it's my own damn fault.  On the bright side, missing that dose was a small, unintentional test that tells us there's still a significant amount of bacteria that we need to get under control.  So we keep moving forward.  Three antibiotics, monthly check ups and monthly blood draws.

It's crazy to me that we've been treating for 7 months now.  But I feel encouraged that I'm starting to see improvements for the first time!  Prayers that improvements continue are highly welcomed!

Oh, and DO THE LYME DISEASE CHALLENGE!  It's not challenging!  For the love of Pete, the lime is supposed to be the fun part, but if going to the store is holding you back, share mine and post one new fact!

Well, Alright...

Opening Update:   

So I had my monthly doctor's appointment yesterday, and it went very well.  It went differently than I expected, but well.  Today marks 3 months on my antibiotic regiment, and I knew that at yesterday's appointment we were going to discuss the next course of action.  I thought she may want to switch one antibiotic out and add herbs, or switch to only herbs (I had hoped- and we had previously talked about those possibilities), but with how the last month has gone, she went the opposite direction.  I'm on board with her, I'm just a little surprised and... I don't know what- surprised.  

So I've been on Ceftin and Zithromax for the last 3 months.  Those antibiotics target both Lyme and Bartonella spirochetes (reminder that when one has Lyme Disease, they commonly have co-infections from the same tick bite.  Most of my neurological symptoms- which are most of my symptoms- are likely actually from Bartonella).  Now we're *adding* Rifampin on top of Ceftin and Zithromax, which is a cyst-buster.  If you recall, the bacteria morph and change forms in order to evade your immune system and treatment.  They form and hide in cysts.   So the Rifampin is to break those open... Should be a good time.  

Feels:  

I'm actually feeling okay about staying on the antibiotics- in that I trust this doctor, and she said that Rifampin is extremely effective and she can often discharge patients after using it.  I just don't feel well already, and I just took my first dose of Rifampin, and I'm just kind of scared to see how my body reacts.  My nervous system is already on the friggin fritz all the time and it does not feel good.  I had also mentally prepared myself for a 3-month course of antibiotics, and I think part of what got me through that decision was thinking that it would be over after 3 months and I could hopefully remove one, or both, and switch to herbs for a while.  So this decision to keep me on the two I've already been on for three months, and adding another one that made the pharm tech say "oh man" when I dropped it off at the pharmacy, is making me realize "alright, so clearly we're going the distance with the antibiotics..."  I was really excited to stop them- because of fear of the effects of long-term antibiotic use, because they're pharmaceuticals, and because they're obnoxious to take (with food, away from dairy, 12 hours apart, etc. etc.  And when I'm taking so many other things that have overlapping requirements or completely different requirements, I'm shoving pills down my throat all day, trying to stay on a schedule and make sure I'm taking everything at the right time, with or without the right food).  So I guess I'm disappointed, and scared, and bitter that I added two more white pills a day to my load instead of removing them, but I also still have hope that we're at least killing these jerks.  If how I'm feeling is an indicator of the amount of bacteria that are dying, then it's worth it.  

So yeah, the gentleman working at the drop-off counter at the pharmacy yesterday is fairly familiar with me.  Ty and I used to workout at the same gym as him so he recognized us from there, but now he sees me quite often at the pharmacy.  When I dropped off the Rifampin scrip, he looked at it and said "oh man...  Is this for you?"  Not really the comforting words that one wants to hear when they're not feeling well and yes, it is for me...  He asked if I was trying to "fight off an infection or something?"  Um yep, you could say that : - / 

Continued Update:  

January has been a whole different experience.  Previously, some symptoms were decreasing (and others were increasing), but there seemed to be more ups (that lasted longer), and less downs (which didn't last as long).  January has been an up and down battle, daily.  Every day has been different, although there are some patterns when you log my symptoms.  Literally one minute I may be in excruciating pain, and the next it's like it never happened (that's always a nice relief!).  Then I may be starting to feel well one moment, and get kicked onto my butt, with a "ha! There!" the next.  January has been more unpredictable than previous months.  I was starting to learn the patterns and cycles of the bacteria, and now things are so stirred up, it's all changing and every hour is a guessing game.  I guess it's a good thing that things are stirred up.  Something's happening.  Let me just reemphasize from my last post how rapidly I can go from not feeling well to well, or feeling well to unwell.  

As I read off my list of symptoms that I had over the last month to my doctor, she said "well I didn't hear one thing that's not absolutely classic Lyme," which was weirdly comforting.  Sometimes when a new symptom pops up, it scares the living day lights out of me- like noticing that it feels like I stop breathing when I'm falling to sleep, and sometimes even during the day that I get stuck in the exhale position and have to remind my body to inhale; and like shooting pains or aching pains in my hands when I do my favorite thing- play piano; or shortness of breath and chest pain when I do my other favorite thing- sing, or during any of my other favorite activities for that matter; or internal tremors and vibrations when I'm falling to sleep, which make me feel like I'm both buzzing and like there's an earthquake; or horrible nerve pain; or forgetting how to drive to a place I've been to many times, in a town I've lived in my whole life; or...  

The only not-comforting thing, is that I have a lot of heart-related symptoms.  My doctor really believes they're not actually from heart problems, but rather, from neurological problems- but we can't believe and hope for that, only to find out down the road that I had an unknown heart problem either unrelated to Lyme altogether, or exacerbated by Lyme, or brought on by Lyme (Lyme carditis).  So she's writing a referral to a cardiologist to get another EKG and an echocardiogram done to check things out more.  

My blood pressure was 90/50 at my appointment, which my doctor joked was an improvement from my average of 80/40 when she usually takes it...  We wonder if the symptoms I seem to feel in my chest and heart are a result of my dipping blood pressure- which may make it feel like my body/heart are playing catchup.  I hope so.  

In other news, we did more bloodwork last month, during which she ran my CD57 again, amongst other goodies.  As a reminder, the CD57 marker is not diagnostic, but is used as supportive evidence.  The CD57 is kind of a marker of overall immunity.  We want the number to be over 100, but our goal right now is 60.  When we ran my CD57 before I started treatment, my number was 14.  We want that number to go way up. When we ran it this time, it was 9.  Yikes.  Makes sense, considering how I'm feeling.  But she says that doesn't mean we're not on the right track.  It means my body is clearly under a ton of stress trying to fight this, and the "pot is stirred up."  Things are happening, but in the mean time my immune system is screaming for help and trying to stay afloat.  

So this graph is fun.  

• A CD57 natural killer cell level of about 200 is believed to be the area in which it is safe to discontinue use of a protocol without the risk of encountering a relapse.
• Even if your symptoms disappear, you should still continue with treatment until your CD57 reaches about 200 to avoid a relapse.  
• 200 is also the level where CD57 natural killer cells should naturally reside.

So anywho, this has been filled with sarcasm.  It makes me feel better about what's going on.  I'm feeling pretty well mentally at this moment, just not physically.  

Bring on February.  

The Show Must Go On

It wasn't until the last couple of spoonfuls of my soup this afternoon that I realized the strange position I had been eating in.  I felt so weak that I had been completely hovered over the bowl... Sitting up straight and bringing the spoon all the way up to my mouth felt both too exhausting, and too risky that it may spill everywhere before reaching my mouth, since my hands were so shaky.  Then I got up super slowly, and walked super slowly over to the kitchen to put my bowl in the dishwasher, because the act of standing up and beginning to walk brought a rush of light-headedness, tremors, vibrations, and my heart pounding out of my chest.  Such awesome timing, too, as I had been feeling well enough to get a bunch of stuff done all morning (although I could have gotten away with doing nothing all morning today if I had needed to), and was minutes away from heading out the door to go teach, which I needed to do.  Typical, Lyme...  Typical.

A lot of times, Tyler comes home from a trip and will say "how have you been feeling?"  Lately, my response has been "you know?  Not too bad!"  In the following days while he's home, he gets to deal with every episode during which I am not feeling too well, which has lead him to ask "why does it seem like you're worse when I'm home?  You say you're feeling 'not too bad' while I'm gone and then I come home and it seems like you're worse."  And then I realized, there are multiple reasons for this.

Firstly, Tyler does not make me worse- let's get that clear right off the bat.  Tyler makes everything in my world better.  One reason I may be worse, is because Lyme flares constantly.  That's what I need the world to understand.  I can be having a great minute, hour, day, couple of days, and then BAM- out of absolutely nowhere, I'm down for the count.  Sometimes it lingers for a minute, hour, day, or couple of days.  It. is. always. different.

Yes, I'm having more moments and days when I'm feeling much better than I was a few months ago.  I am SO thankful for that, and so encouraged by that.  But this cycle of telling him (and everyone else) I'm "feeling pretty well" and then clearly not feeling well at all is a giant reminder to myself, to Tyler, and to the world that Lyme is a freaking hot mess.  A hot mess.  It is so unpredictable and obnoxious and every other annoying word I could describe it with.  I also think it's easy to over-do it when he's home, because we do use that time to get a lot of stuff done that I've been putting off.  I probably do have more moments of feeling pretty well while he's gone, because I can get away with not doing anything when I need to.  When we have two days to get a lot of stuff done before his next trip and we run a bunch of errands at one time, I do not do well.  A lot of times I'm like "yeah!  It's go-time!  Let's go do this, then that, then that, then this..."  And somewhere in the middle I become absolutely useless.  I sit in the car while he runs into the store, then we get home and I crawl onto the couch while he prepares our meals.  Ugh.  Lyme is always the uninvited guest that shows up to the party, where everyone's heads turn and the band's music dies, and it just gets really weird...  -_-

Secondly, I realized that it's not that I don't have flares while he's gone.  It's that I judge how bad they are differently.  When I'm alone, I can feel like crap and no one else has to know- no one, if I don't want them to.  I can carry on my day, or not carry on my day, without it affecting anyone else, and without worrying about what anyone else will think.  I can tremor and hover over my soup and not feel like I'm worrying or burdening someone, choose not to go to the grocery store because I'm the only one who will face the consequences, etc.

When he's home, I always hope to be able to rise to the occasion, to be able to keep up- to go grocery shopping, to actually prepare meals, to be active, to get things done that I've likely been putting off while he was away...  And I've been falling short, almost every time, and it is so much more disappointing to have a flare when I'm with him than to have a flare when I'm by myself.

I've also realized that the moments that I feel really well, I am the freakin' energizer bunny- how I used to be the majority of the time- a go-getter, an over-achiever, obsessively clean and organized, on top of things, never stopping until I get everything checked off on my list of things to do, athletic...  These moments started getting pulled away slowly over a couple years, and I think it's hard for some people to remember that that was the most "normal" me.  I have finally recognized that when I have a list of things to do in front of me, and I don't feel like doing a single one of them, my body is begging me not to do a single one of them.  I get worse when I overdo it.

So my answer to you is the same...  How have I been feeling lately?  Depends on how you define "lately."  If you asked me at any moment other than "now," my answer would be different.  Two hours ago I was awesome and now I don't have the energy or mental capacity to get up and do anything.  Five minutes ago I was awful and now I feel like I want to run around the lake (feel like I want to, not like I'd be capable right now lol).

A couple weeks ago I had a gig at The Bitter End.  I felt pretty solid all day and was really looking forward to it.  A couple minutes before I was supposed to begin my set, I got the worst muscle cramps on the whole right side of my upper body- torso up to shoulder.  When you're performing, the show must go on, right?  No one's ever supposed to know if anything's going wrong in the performer's world- performance-related or not.  And I guess I kind of feel like it's the same in real life sometimes.  Thus the reason that when I'm alone I have a lot more "pretty good" moments, and when I'm not alone I feel the need to push through and put on a good show (note that in relation to my husband, I know 100% that I don't need to, that he will support me no matter what.  It's just the way I am, and just my way of trying to pretend like Lyme doesn't affect every part of my life I guess).

To sum up this "dear diary" post (apologies), if you were to graph how I'm feeling every moment of every day, the trend is that overall I am doing better.  I am.  I think I just need people to realize how broad of an "overall" that is.  If I tell you I've been doing better lately, that doesn't mean I'm "all better."  That means I'm feeling encouraged by the graph, and I am.  "Better" is comparative.  It means showing overall improvement.  Still a reason to be happy.




And if you're interested- I'll continue to be on this 3-month round of antibiotics until my next appointment at the end of January.  Then we make a new game-plan.

Lately I can just feel my nervous system is on the fritz.  I can feel when it's settled down, when it's flaring, and when it's about to flare.  They're the strangest, most unpleasant feelings of external tremors, internal tremors, internal whole-body vibrations...  So bizarre.

We'll keep pushing forward and hoping this overall trend continues!

Things Are Lookin' Up

I had an appointment a week ago, which was super short and to-the-point, but super encouraging.  I'd been questioning whether or not I wanted to be on antibiotics, because although no one can tell me how long I may be on them, the first course alone is 3 months.  My doctor told me it wouldn't be abnormal for me to be on them for 2 years...  Holy moly, right?

When my doctor first asked me how I felt about antibiotic treatment, I was too overwhelmed to care.  I thought "you're the doctor, I'm here to do what you recommend at this point."  Only a few days after I started them I was having second thoughts; I think mostly because the amount of white pills I consume daily is increasing and I hate that, and we all know how long term antibiotic use can affect someone.  I also wanted to be able to feel their effects, to know that they're going to do some serious business if I'm going to be taking them...  And nothing seemed to be happening.

I had been waiting to have a giant herx, which is definitely no fun- like a "having bad symptoms today?  Let's make them a million times worse!" type of thing (herxing is when you have a reaction to the load of toxins being released in your body...  When bacteria die they release toxins.  We're hopefully killing a ton of bacteria here, so I was expecting the worst).  I was still having up and down days, but nothing that I couldn't handle, nothing worse than I'd ever experienced before, and if anything, I was having more "up" moments than "down" for the first time in months.  Although I'd never wish a herx on anyone, I almost hoped I'd herx so I knew the antibiotics were doing something- so I knew that large amounts of bacteria were dying for sure.  I actually had a few days where my symptoms were almost nonexistent (almost..).  That hasn't happened in 7 months.  So what was happening?  I was confused as to why some symptoms went "poof" when my understanding was that they were supposed to get worse before they got better.  I was really thankful to have those days that I felt really well, but I wasn't sure what they meant.

So hallelujah, that my doctor believes my response means the antibiotics are doing their job.  She said a herx is something we want to avoid.  My understanding was that it was almost inevitable; apparently not.  She said herxing usually happens when you don't respond well to your treatment, or it's too much, too fast.  So the fact that my symptoms were waning meant that I'm probably on the right thing, and the right amount.  The. Best. Words. Ever.  I know that sounds dumb- I was starting to feel better and was afraid of that?  Only because I'd been told so many times that a herx was a possibility (if anything, I was told "you will herx"), and meant that the bacteria were dying.  Again, I thought it was inevitable and a good sign, even if it made me miserable.  I also know that the bacteria are highly evolved little buggers and that some treatment forces them to change forms so that they can hide- I was really afraid that was happening.  But for now I will take every moment of feeling a little bit better, and believe with every particle of my being that my response means that this is already working.

My doctor did some small tests to check out my nervous system and said that neurologically, I look a lot different than I did on day one.  She could tell things have settled down a little bit.  Woo hoo!  Let's keep that going!

I've had a little bit of a setback this week- we just moved and I overdid it.  Symptoms are creeping back in (pretty major pain and tons of internal tremors and vibrations mostly), but hopefully I'm working my way to a point where I'll be able to bounce back a little easier from things like that.  Fingers are crossed.

I have two more months of this round of antibiotics, and in a month we're likely going to keep one and switch the other out with a different antibiotic, so the bacteria don't get used to them.  Happy thoughts that things continue to go forward and not backward!

Today, I am thankful for some moments of relief- they're the beacon that remind me that I'll find the way.

Who's In Charge Here?

Who's in charge here?:  

After my last appointment, the plan was to get started on injectable antibiotics (which would get into my nervous system more effectively) and oral antibiotics.  It wasn't until I went to the pharmacy to pick these up that everything changed.  To shorten an unnecessarily long story, when I went to initially pick up these prescriptions, the total cost just for the injections would have been over $1,000.  I went home to think about it, went back in the next day to pick it up (with the help of our gracious family), and somehow they'd given me the wrong price the day before.  The new total was over $2,000 for the injections alone.  What??  How do you even get it that wrong?  And, WHAT?!  My insurance won't touch it with a ten foot pole, so it would all be out of pocket.  $1,000 was enough to stop me in my tracks and think about it.  But double that?  Just for the first 3 months of treatment?  

It wasn't a fun week for me, realizing that the one thing my doctor recommended I start with wasn't covered by my insurance, and was far too expensive for us to pay for.  How did I get into a position where I have to choose between doing what's best for my health and being able to pay the bills?  As if I wasn't already aware of how ridiculous our system is, this was a giant slap in the face.  I'm standing at the pharmacy, physically leaning on the counter because I was so weak that day, and I had to walk away from the pharmacy empty handed.  I felt betrayed by the system.  I felt like "they" didn't want me to get better.  I lost it.  

I am thankful that the options even exist for me.  There are so many places in the world where that drug wouldn't even be an option.  The injections are there, if I could find a way to pay for them.  But let's look at our system here.  The receptionist at my doctor's office told me "I know you'll hate me for even telling you this, but if you got the same drug from a veterinarian, it would be $15."  I didn't really know how to respond at first, because I wasn't sure how to compare the drug for humans vs. animals.  I said "well, what's the difference?"  He said "nothing.  They're both human grade.  The difference is the way they market it.  That's the markup for humans."  That's the markup for humans.  $45 for 3 months, or $2,000 for 3 months.  Yep, I was disgusted.  

I cannot afford to pay $2,000 for 3 months of injections.  We're looking at a minimum of 2 years of treatment.  $2,000 for just 3 months is not adding up to a great total in the end.  Although, if my health continues to decline at the same rate, we're also looking at a not-so-great outcome in 2 years from now.  So, what do we do?  

Okay then...  New game plan:  

Although my doctor said there's no alternative to the injections (there's nothing else that will do exactly what she wants those to do), of course there are oral antibiotics.  I figured it's at least a start, and I can wrap my mind around the cost of the injections until I see my doctor again in a couple of weeks.  I started two orals last Thursday evening (Oct. 30), and am taking 1,250 mg. daily between the two.  They're pretty heavy-duty.  The pharmacist made sure to ask if I knew what I was doing when I picked them up...  

This has been so much more of a mental battle than I thought it would be.  As someone who really believes in living off of the earth, treating as naturally as possible, eating/drinking organically, etc, I have a very hard time waking up and beginning my cocktail of drugs that are keeping me going.  I'm taking meds to support my adrenal function (cortisol levels are on the floor in the morning and at noon without it, and the resulting fatigue is too much to be able to function), meds to stabilize my blood pressure (average blood pressure range is 80/40-90/50 without it), two antibiotics to kill this bacteria, and a plethora of supplements.  I hate it.  If they can make me better, of course I am thankful for that.  I think the battle comes from not knowing if any of the treatment for Lyme will work.  

Right now, besides the antibiotics, the meds I'm taking are to help various parts of my body get back to functioning normally, because Lyme is wreaking havoc on them.  That's not taking away the Lyme, that's just handing me floaties until I can swim on my own- keeping body parts functioning until we get a grip on the Lyme.  To me, it's like battling Godzilla...  Godzilla's stomping on homes and buildings and ruining entire cities.  We can start to pick up the rubble in the city, but Godzilla's still out there and is just going to find other cities to destroy while we're rebuilding the ones he already destroyed.  Who's going to take down Godzilla?  There are a lot of things that we can try, but no one can tell me for sure if any of them will work.  It's all a guessing game as to what will work and when, and if.  I'm still processing that.  At my first appointment, my doctor said that if nothing else, we can hopefully prevent it from getting any worse.  

Who's in charge here?:  

As a total control freak, the lack of control is driving me crazy.  I keep telling myself that maybe that's the lesson I'm supposed to learn here.  I'm working on it.