EEG

Packed and Ready to Go

Today, I go into the hospital for my video-monitoring EEG. I will be in the hospital for at least 24 hours and possibly up to 3 days, depending on whether or not I have any episodes. My appointment was tentatively at 11 this morning; however, I was instructed to call first and make sure there was a bed available. I called this morning and no beds were available yet, so now I'm on standby just waiting and waiting to get this over with...

The instructional paper I was given says I will be poked, prodded and tortured in any way the Epilepsy Monitoring Unit sees fit in order to raise the chances that I will have a seizure while I am there. Okay, maybe it wasn't worded exactly that way, but it might as well have been. Mostly, I'm told it's just going to be really, really, really boring.

I haven't had any full-fledged seizures, or pseudoseizures or whatever it is that we are calling them since my experience in the ER a week and a half ago (and hopefully we will have a name for them after this test!). I have, however, had some "minor" episodes. I wouldn't call them bona fide seizures, but something crazy is still going on in my body.

I've got my bags packed (including my awesome bunny slippers) and I'm ready and waiting to get this over with.  We've got a sitter lined up for the kids and my husband and I have decided we will just pretend we are on a date in a really crappy hotel. Here's to hoping this will shed some light on whatever the heck is happening inside my brain. Cheers, friends!

A Quick Update

It's late and I really need to get to sleep, but I wanted to post a quick update. I haven't had any seizures, since Wednesday--the night that I went to the ER because they wouldn't stop. More good news: My MRI results came back normal. I have an appointment scheduled on Friday, the 31st, for my video-monitoring EEG, to see if we can capture any of my episodes on video.

Today was the first day since the seizures started that I've been brave enough/felt well enough to venture out of the house for anything other than doctors appointments. We went to my favorite swimming hole--my happy place--so I could soak in the water to help my sore muscles. I also had a massage this evening, so I'm in good shape now!

My Happy Place

I really wanted to share my good news and say an extra special thanks for all the love and support I have received throughout this very difficult time in my Lyme journey. Thank you all; it means the world to me!

My Story of The Big Brush Off

Yesterday, I had over a dozen seizures. After a traumatic six hour ordeal in the ER, I was told by the neurologist (who witnessed an episode), "Well, you're probably just anxious and depressed because of your Lyme diagnosis." (Ahem, I was diagnosed two and a half years ago, lady!!)

She discharged me and I had another seizure in the car. Never in my life have I felt so completely helpless and outraged by the medical community (and as a Lyme patient, that's really saying a lot).

I had a CT scan and a ton of blood work at the hospital and everything came back normal. How I long for the day when instead of sending you home, the doctors will actually say, "Everything came back normal--except for your Lyme disease tests." But that's a blog post for another day...

The neurologist called my episodes non-epileptic seizures. It may be helpful to read this link about what a non-epileptic seizure is. I, however, was sent home with a very unhelpful and downright demeaning paper describing my supposed disorder (also called pseudo seizures) as "one with no medical cause." It goes on to state in the next paragraph that, "this disorder is caused by stress or emotional trauma." Well, which is it? Is there a cause or not??

The neurologist kept asking me in every way she could possibly think of if I was abused, either currently or in the past. She really didn't seem to believe my answer of no. The clincher? My helpful and informative paper about non-epileptic seizures actually says, "Sometimes, non-epileptic seizures may be due to a person faking the symptoms to get something he or she wants." (I really wish I had a link to where ever they printed this off from!)

The good news is, it's already 7:00 P.M. and I haven't had a single seizure today. I must be still too worn out from my Oscar-worthy performance in the ER last night to muster up the strength to put on another show! Someone give me a trophy, because my acting skills last night were killer!

Jokes aside, I had an MRI this morning and am still waiting on the results of that. I am also waiting on an appointment for a 24-hour video monitoring seizure test that will hopefully shed some light on what the heck is actually going on. I also have an upcoming appointment in a few weeks with a more Lyme-friendly neurologist.

If you don't have Lyme disease, you probably have no idea how badly Lyme patients are treated by numerous medical professionals who are prehistorically out-of-date on their Lyme disease knowledge. If you do have Lyme disease, you likely have your own version of The Story of Receiving the Big Brush Off By Doctors. (Feel free to send me a link to your story and I would be happy to publish a link at the bottom of this post.)

We don't tolerate bullying in schools. So why should we tolerate it in our healthcare system? In my head I keep replaying the scene over and over again--this neurologist who refused to even look at me (all questions were addressed to my husband, not me) asking me the same question: Am I being abused or bullied, either now or in the past?

My new answer: Yes, my whole life, doctors just like you have abused me by discrediting me and my pain, time and again. I am a person, a human being, and I am trusting doctors just like you with my most sacred treasure: my health. You may not understand much about Lyme disease and I'm okay with hearing you utter those words--that you simply don't understand what is happening to my body. But you do not, under any circumstances have the right to insinuate that what I'm going through is in my head or that I am making it up.

Because the truth of the matter is, I've already forgiven doctors just like you who were not able to see my diagnosis as Lyme disease, inadvertently causing me to suffer an inhumane amount of pain and suffering for perhaps the rest of my life from what should have been a curable disease, all because I let doctors just like you convince myself that maybe my pain and suffering wasn't legit.

Hope

For over two and a half years now, I've wrestled with the same question question: How do I live in harmony with chronic illness? I started this blog to chronicle my journey and my attempts at finding peace in the midst of the chaos of living with Lyme disease.

No one can predict what the future will hold for them (except maybe Miss Cleo), but with chronic illness, it's especially hard to plan for the future. So much of your life is up in the air. Making short-term plans can be a nightmare; making long-term plans, nearly impossible.

When I started this blog, I didn't make feeble attempts at guessing what my health would be like "X" years down the road, but I certainly didn't picture myself so sick this far down the road. Here I am, well into my Lyme disease journey and I've been thrown a completely new curve ball: I'm having seizures. A lot of them.

This is all new to me and a lot to digest. I feel like a lot of doors are being slammed shut in my life right now. I'm trying to be gentle with myself though, and I keep reminding myself that just because a door is closed right now, does not mean I won't be given the key in the future.

So now I'm wrestling with a new question: How do I live in harmony with seizures? Where do I put my hopes and dreams that I've already had to put on hold for so long? I want so badly to be able to fulfill my lifelong dream of becoming a massage therapist. I want to help other people struggling to cope with the life of chronic pain, but for now, the only way I can do that is through my words on this blog.

I'm sad and I'm scared. I want answers. But I still have hope. And honestly, that's really all that matters. I will overcome this!

I don't like this post already and I haven't even written it. So let me start off with something good. Two things I am grateful for about today: (One) a great phlebotomist and (Two) the fact that my horse is boarded right around the corner from my doctor's office. Maybe you've guessed by now that I'm not doing well.

Thursday was my birthday, and I kicked it off with a seizure. I hadn't had one in several months. Friday, I had another seizure. This morning I had two more episodes. Technically, we don't know if they are bona fide seizures. I've heard the terms partial seizures, pseudo-seizures and convulsions. Whatever you want to call them, they are scary.

I was able to get in to see my Lyme doctor this morning and she got to witness an episode. To make a long story short, I have to take a million medicines and I have to have a million tests done. I am nine vials of blood less than I was before my appointment (cheers to an awesome phlebotomist, though, which makes all the difference in the world!). I thought I was going to break my record for most number of vials of blood taken, but, I did not (12 is my record, for the record).

Brief visit with my pony after my doctor's appointment

So...This all stinks, and as expected, I'm scared, angry, frustrated and unhappy that all of this is happening to me. But there's not much else I can do but try to adjust, keep my chin up and stay positive. 

If you want to know how you can help, please consider making a donation in my honor to raise money for Lyme disease research. Feel free to share this post and/or link to my donation page.

Bicillin, Round Deux

When my Lyme disease is flaring up really badly (like now), my brain starts trying to spell things like a 1st grader would./Win mi lim dizeaz iz flar ring up rily badlee (lik naw), mi brayn starrts tri ying to spel things lik a furst grayder wod. Needless to say, writing has become incredibly difficult and time consuming for me.

Stringing together words and sentences into anything coherent is daunting and takes days. I'm embarrassed to admit that I've been working on this particular blog post for several days, desperately trying to put facts together in proper order, not omit any necessary information, and/or at the very least, to make this post make sense! If I don't break up my posts into small paragraphs, I'm not able to read them at all, which is a common problem among fellow Lyme sufferers.

Gratuitous picture of my cat to help break up the text. You're welcome, Lyme friends.

When I got off of my intramuscular Bicillin injections (shots to the butt) a few months ago, my nasty brain symptoms came back and I felt myself slipping back into the brain sludge that makes Lyme disease mimic Alzheimer's disease--finding myself lost in a brain unable to remember the whos, whats, whens, wheres and whys of daily life that most of us take for granted unless sickness comes and steals away our memory. (We don't even need to talk about the microwave incident today...)

I've fallen back down to functioning at a much lower level of my pre-sick self--maybe around 45%. I tire very easily and I can't remember anything without sticking post-it notes to my forehead.
So, on Mondays, Wednesdays and Fridays, my butt has a date with Bicillin, once again. Last Friday was my first day back on shots. The reason I'm back on these injections after I already did several months of them is that it was too soon to quit, (quitting the shots was my own personal decision and was not my doctor's suggestion) and so the Lyme disease came back with a vengeance.

Let us all pause for a brief intermission as we all OOH and AHH over this Mama Llama and her cute baby.

While on the shots, I was functioning at about 90 or 95%. The goal with Lyme treatment is to be symptom free for two months before quitting treatment. I thought I would be okay to switch from shots to oral antibiotics, but my body wasn't quite ready and my health has gone downhill ever since.

Most oral antibiotics do not cross the blood brain barrier, whereas intramuscular injections do. That is important in the case of chronic Lyme disease because this infection is in my brain. And I really, really, really would like my brain back! Perhaps it's time to start posting fliers on telephone poles in my neighborhood: REWARD! Have you seen this woman's brain? If found, please return (minus spirochetes) to Alyson.

Well, folks, my brain is shutting down now. So, go on! You've got your update! You'll get another post when my ability to read and write comes back. And if this post doesn't make a lick of sense, well, enjoy this picture of a frog...

Ribbit!

A Blog Post to Myself

When you live with a chronic illness, you go through a lot of emotions in a single day. Some days are easy; some days are not. Today I hit the two year marker of my treatment of chronic Lyme disease. Two years! I simply cannot believe it. And in true Lyme fashion, this day was both easy and difficult.

Last night, I had an amazing massage that gave me so much energy. I was able to accomplish so many things today and that felt like nothing short of a miracle. That doesn't mean that I wasn't in pain, nor does it mean I wasn't exhausted. It just means that I was able to do more than normal, and for that I was grateful.

But alas, all good things must come to an end, and this ending involved the "bursting" of the burst of energy from my massage. I had what I refer to as a Lyme crash. I found myself stuck in my car in the driveway, too exhausted to get out and walk inside. I stayed in my car for about 20 minutes before I could muster up enough strength to move. There is no end to the many ups and downs with Lyme disease. But there was a time when I couldn't even get out of bed...

Over the course of these two years of treatment, I'd like to remind myself of a few things and a few lessons that I've learned along the way. So here goes.

Dear Alyson,
First and foremost, I'd like you to remember to always try your best to be gentle with yourself. You are doing what you can, with what you have, where you are. And you are doing a great job. Yes, it's hard. Yes, you often want to quit. But you don't! You persevere and you are strong. You are not afraid to ask for help when you need it. 

When you feel overwhelmed at the prospect of living the rest of your life with this illness, you're focusing too much on the negative. You are still able to do so many things in spite of your illness. Yes, you have to work much harder than most people at many things. But you don't give up; just look at all you've overcome!

Other people can be there for you and help lift you up when you are down (literally and figuratively), but ultimately you are the one in charge of your health and your mental outlook. You are your own best friend, so act like it. Thank your body for all of its hard work in healing. 


Way to go, Alyson! I'm proud of you!


Love,
Alyson

PS, Never give up on a cure! Some day, some way, you--and all of the others suffering from this disease--will be healed.

Cape May Point, NJ

For nearly two years of my life, I've given everything I've had to treatment of my chronic Lyme disease. Everything. A few months ago when I was doing really well, I was okay with that, but now that I'm relapsing and I feel like I'm back where I started from, I've been really down in the dumps and mentally burnt-out.

I'm happy to report that I'm freshly relaxed (and tan--a rarity for my pasty old self) from a week at the beach. I went with several family members (over 30 people!) to Cape May Point in New Jersey. Because of my rapidly declining health, I did not decide up until the night before we were supposed to leave if I could make the trip or not.

Our Beach Path

The original plan was for me to go to the beach, take a week off of treatment and just relax and enjoy being on vacation. But I started going downhill really fast and thought I'd better get in touch with my doctor before leaving. She said something of the nature that if I was feeling bad enough to call her, then that was probably a sign that I needed to start my new treatment ASAP. Starting a new treatment meant there was no way I would have been able to travel and/or enjoy my vacation.

I love my doctor and I would not be here without her incredible wisdom and knowledge of Lyme disease and co-infections. She has lovingly guided me through these two incredibly difficult years of treatment and brought me back from the brink of death. I know there is nothing more frustrating for a doctor than a patient who doesn't heed their advice, but this was one time when I had to listen to my heart.

It was a gut wrenching decision for me to go against the advice of my doctor--something I've never done--and to go on this trip knowing that the odds were high that I could get much, much worse being off of treatment for a week. But I made the right decision. This vacation put the fight back in me.

Sunset over Sunset Beach

You can't actually take a sick day when you have a chronic illness, but this trip was as close as I could get to my own personal version of Ferris Beuller's Day Off. Yes, I was beyond exhausted; yes, I was in severe pain; yes, I got sun poisoning from one of my medications, but it was all worth it to "call in sick" from Lyme disease for a week! Now I'm ready to go back to school, er, treatment. And Dr. P., if you're reading this, I hope you won't put me in detention for not listening to you and I promise never, ever to do it again!

 .

Hace un Año

Today marks 365 days with my beloved Icelandic horse, Fjóla. Her love and devotion absolutely blow me away. She drops everything to come tolting to the gate when she hears me call for her. She loves to be brushed just as much as I love to groom her. I ride Fjóla bareback and bridleless: no reins, no bit. I steer her with my legs and occasionally a small crop for when she "forgets" my leg cues. When I put her back in her field, she stays by my side until I leave. My pony loves me and, wow, do I love her!

Tonight, because I was feeling so sick from my Lyme disease, I had to park my little 13.1 hands high "low-rider" horsie right next to a chair so I could climb on her back. Icelandic horses are very small and generally, even on "bad" days, I can still manage to clamber my way up. I didn't even have the oomph to try tonight. My health has been steadily going downhill over the past few months, and it has been taking a huge toll on me. As badly as I felt, I knew that I mentally needed to ride my horse tonight. 

Fjóla and I have begun practicing steering (with my leg aids) during the tolt (her fast past). She is generally very poky and takes plenty of coaxing to get moving (we like to joke that her quarter ran out). Tonight, however, she gave me a beautiful fast (but not too fast) tolt. Round and round we went, her mane dancing in the breeze, with my little ponytail floating out behind us. It dawned on me that not only did I have a giant smile plastered on my face, but for that fleeting moment, my pain was completely gone.

I can't explain why even though there are times when I can barely walk, I can still somehow ride my horse. Magic and healing can be found upon a horse's back, and so, then, can I. My pony carries me away from pain and sickness and while I am on her back, I am free of Lyme disease.

Sometimes, when I don't want to take my medicine, I call for some assistance.

Om nom nom!

Bingo!

Wondering if you might have Lyme disease? Well, wonder no longer! Just take a look at our handy new Medical Specialist Bingo Board below:














How many of these specialists have you visited in the last six months? If you've got three in a row or four corners, congratulations: you win a free visit to read the symptoms of Lyme disease!

Can you fill out your whole Medical Specialist Bingo board*? Well, congratulations! You might just be the newest member of the Lyme Disease Club! Pat yourself on the back and send your blood off to be tested! Bingo!

* Gentlemen, you get a "free space" on the "gynecologist" square.



It has been estimated that only 50% of people with Lyme disease ever recall a tick bite. Left untreated, Lyme disease can attack any and every organ in the body. When multiple body systems are being affected, Lyme disease needs be properly ruled out by a doctor well-educated in Lyme disease. A huge number of Lyme disease patients will be bounced around from specialist to specialist before they are ever tested for Lyme disease. Know the facts.

June Update

I'm finally getting around to posting an update. I apologize for the lapse in posting; I've been a really bad blogger lately! I will make up for it with lots of pictures. My health has been extremely up and down, but thankfully I haven't had any more seizures since my last post. I am, however, sporting a lovely 30 day heart monitor in case I have any more of the heart episodes I've had recently. I'm on day 20 with no events yet.

A few weeks ago, I went on an overnight hiking trip. This was my very first backpacking trip since becoming debilitated from Lyme disease in 2009. After being bedridden for months on end and enduring nearly two years of agonizing treatments--including seven months of painful injections--I'm over the moon that I finally accomplished my goal of going on a hiking trip!

This trip was very difficult for me and it really did a number on my body, but I was (and am) enormously proud of my accomplishment and it was worth every bit of the pain that it caused my body. Though I really haven't been feeling very well the past few weeks, I somehow managed the two mile hike in (luckily we found a service road and were able to drive our Subaru in, so I didn't have to hike out very far), and this trip felt like my triumph over Lyme disease. That is, until I noticed something in my hair on the car ride home...

I was the only one who hiked in wearing long sleeves, jeans and tall hiking boots; the other three people had on shorts, short sleeves and sneakers. I was the one warning my friends, "Don't lean against that tree--that's one of the easiest ways to pick up a tick!" I was careful, and out of four people on this trip, I was the only one who came home with a tick bite. To say I was heartbroken would be an understatement.

Please be very careful, friends! Check yourself for ticks thoroughly and often. Even being very careful, I still ended up with a tick bite. This is supposed to be the worst year ever for Lyme disease. I was lucky; because I am currently on multiple antibiotics, my doctor feels I am protected against any tick borne diseases that my little hitchhiker may have been carrying. So if anyone had to come home with a tick bite, I guess it was good that it was me! (As a side note, my tick was donated to science; she was sent off to an entomologist in my state.)

Lyme disease has taken such a huge part of my life away from me. I will NOT let Lyme disease steal my love for the outdoors away from me, too. I know too many people with Lyme who will not go in the woods any more.

I can never be one of those people, because nature is my biggest inspiration for getting better!

As I said, my health has been very up and down; my body is still adjusting to a different treatment protocol (I'm done with the painful Bicillin injections!). I have had many huge Lyme crashes where I can't do anything until it passes. I had one day where I couldn't move for three hours; a few hours later I felt great and went off riding my horse!

It's really hard for people to understand the up and down nature of this disease. There's absolutely no rhyme or reason to it. Sometimes I'm up; sometimes I'm down. Sometimes I'm in a lot of pain; sometimes I feel great. I wish I could explain it, but I can't.

I have really learned to cherish the good moments and play with my children, dash to the barn to see my horse, play my drums, go in the woods, etc. And I have learned to pamper myself in my bad moments--I get weekly massages, indulge in my favorite comfort foods, take epsom salt and aromatherapy baths, etc.

Sometimes, you just have to make the best of a bad situation...

PS, I meant humor, not alcohol! But, hey, this puppy looks pretty content...

Seizures

"Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen." -Winston Churchill

This is an extremely difficult post for me to write, and for some people it may be equally hard to read. I knew I needed to write this post for myself, but I really wrestled with the decision on whether to publish it or to keep it private.

The main reason I keep this blog is to help my family and friends understand my disease, and--because the vast majority of my illness goes on behind closed doors--even some of my closest friends have never seen the wrath of this disease on my body. If I don't feel well, I stay home. Since May is Lyme disease awareness month, I've decided to publish it.

A few weeks ago, my heart started pounding. No big deal, I thought, as I took some deep breaths. Then my throat started going numb. Suddenly, my insides felt like they were on fire, and I felt heat spreading slowly throughout my body like a wave. I felt dizzy and nauseated and thought I was going to pass out. My heart galloped like I've never felt before for around 20 minutes.

I was fully conscious, but I felt completely out of it and trying to form words was incredibly difficult. Next my body started shaking and my muscles started jerking and convulsing. I was so scared and all I could think was that I was having a seizure. After the episode was over, I was left with a dizzy/lop-sided feeling and absolutely no energy for ten hours. I could only get up to go to the bathroom.

I got in touch with my doctor and she felt that my autonomic nervous system was going haywire from too much die-off. (As the Lyme bacteria are killed, they release a toxin into your body faster than your body can process it, causing a huge increase in Lyme symptoms and making you feel temporarily like hell; this is called a Herx reaction, and it is a "good" thing because it means the bacteria is dying.)

The next few days were rough. My anxiety came back. I started having panic attacks. My joint pain came back. My memory started slipping again, and I started going downhill really fast. I stopped my new medicine and I went back to two shots a week instead of just one (we were in the process of weaning from three Bicillin injections a week down to one a week).

Then, last week, I had another episode--this one even worse. First, I started experiencing visual disturbances, similar to those I get from migraines. I was seeing spots and my eyes would not focus. Suddenly, I felt like passing out. I laid down and noticed that my left arm felt completely wet. I touched it and it was, of course, not wet. Next it felt like someone was putting Icy Hot all over my arms and legs.

Then I started shaking and my muscles started jerking and convulsing to varying degrees, which lasted for a hellish 45 minutes. At one point my left arm clawed up and started flailing. At the same time, I felt what I can only describe as a bubble in my right ear moving slowly across to the right side of my brain.

The whole time, I felt a bizarre zen-like calmness, which was completely unnerving, since my body was freaking out and should have been coursing with adrenaline. I will take calm over panic any day, but it was alarming.

We now think both episodes were likely seizures. Seizures are actually a fairly common symptom of  Lyme disease. My doctor wants me to wear a heart monitor for 30 days and to have an EEG to test for seizures. There have been other times during my treatment that I suspected I may have been having seizures, most notably during treatment of my co-infection, Babesia. This is a video of what I looked like during the episode (please note, this is NOT ME in the video).

The experience was deeply traumatizing. Losing control over your body is absolutely terrifying. It's hard for me not to dwell on the fact that it may happen again, especially when going out in public. Going from over 90% better last month to having seizures this month is heartbreaking.

But I don't want to live a half-life where I dwell on what ifs. I'm trying hard to reach out and grab life by the horns and not let it pass me by, because when you have a chronic illness, it's so easy to just let life slip through your fingers. I'm just taking it a day at a time.

It's been ten days since the last seizure and I haven't had another one. I finished my last Bicillin shot last week, took a week off of treatment and started my next protocol yesterday. I'm back to oral antibiotics, although in all honestly, really I'd rather have a shot three times a week than pop so many pills everyday. But those pills are what keep me functioning, so reminding myself of that makes it a little easier to swallow them down.

The most difficult part of this disease is knowing that it could have been prevented. When caught and treated right away, Lyme disease can be cured; untreated for too long and you can end up fighting for your life. When I think back on the decades of countless doctors I saw over the years since my first tick bite as a child, not a single one of them was able to recognize Lyme disease, causing a treatable disease to turn into what could likely be a life-long battle. 

What I want more than anything is to see a change that starts with education. Recognizing the early symptoms of Lyme disease is crucial in keeping the disease in its treatable stage. Please take a moment to read this article about the top ten tips to prevent chronic Lyme disease. 

Just A Passing Phase

Whenever my Lyme disease doctor utters the words, "It's time to change your treatment protocol," it's translated in my brain as, "The shit's about to hit the fan!" I have been in treatment long enough that I have come to recognize a distinct pattern in my behavior when it's time to make the switch to a new treatment.

The first thing that happens to me is that I go into a strange mourning period, known as The Morticia Addams Phase of my treatment. This is the time to find me dressed in head-to-toe black clothing, banishing all smiling from the entire household, and sunk into a miserable, deep depression (usually involving particularly large quantities of ice cream.)

I always need to take a few days to grieve when I have to begin a new treatment protocol. Letting go of what is working for my body and accepting that things are going to be unpleasant for a while is a very difficult thing to face. It means the end of whatever particular form of torture--whoops, I mean treatment--was bringing me relief from the myriad symptoms of Lyme disease.

After my mourning period is over, I morph into The Alice Brady Phase of my treatment. With a sudden burst of energy from out of nowhere that can be likened to a heavily pregnant woman overcome by intense nesting urges, I suddenly fly into a cleaning frenzy as I start prepping my household for the Great Lyme-quake that's about to hit the house once I pop those new pills into my mouth.

If you were to get up for a midnight snack, you might bump into me organizing the Tupperware cabinet, frantically chasing dust bunnies, or lining up bags of unwanted items in the attic for Goodwill. With the threat of me being down for the count for an unknown period of time, this is likely the last time the house will see a sponge or a broom for a very long time.

The burst of energy is usually short-lived. Enter The Cowardly Lion Phase of my treatment. This is the part where I forget all about my strength and bravery and all of the hardships I've successfully overcome since my battle with Lyme disease began. The what-ifs come raining down on my head and knock me out with fear. How sick will I have to get before I start feeling better? How am I going to get through this? What if I can't handle the pain? What if a dodo bird walks down our street and I'm too exhausted to grab my camera and take the photo that would have turned me into a millionaire?

Like a death sentence, The Cowardly Lion Phase of treatment usually has me counting down the hours, minutes and seconds until it's time to begin the new treatment protocol. I'd like to say that at the last minute, I discover my courage and face those new pills like a true champ. Sorry, but no. However, sometime after I'm knee-deep in a nasty Herx, I enter into the final phase of treatment.

(Drum roll please......)

Last, but not least, the hardest, yet most rewarding part of treatment: The Santa Claus Phase of treatment. With the beginning of a new treatment comes the most severe pain involved in battling this debilitating disease, and in these moments I am profoundly affected by the help and generosity of others. Like Santa Claus, I find myself wanting to share the joy with others. This is the part of treatment where life is often covered in a beautiful, soft blanket of snow. With The Santa Claus Phase of treatment comes the hope of a cure and the magical beauty that is this crazy, painful, messy beautiful thing called life.

Detour

As it turns out, my body rejected the new treatment protocol for waging war upon my chronic Lyme disease. It was way too much, way too fast and now I'm backsliding rapidly. I've been working to get back on my feet and to remain positive while swatting away echoes of the "R" word bouncing about in my head:
 relapse, relapse, relapse, relapse, relapse.

Because everyone has a unique immune system, coupled with the fact that many people with Lyme disease are also suffering from various other tick-borne illnesses, what works treatment-wise for one person with this disease often does not work for another. It is very difficult to find the right balance between a strong enough dose to kill the Lyme bacteria, but not so strong that you feel like you're being killed along with it! There is a lot of trial and error involved in finding the right medicines at the right dose.

My joint pain is back with a vengeance; my short-term memory is checking out on me again and I'm getting that spacey, lost, out-of-it feeling again. My energy supplies dwindle rapidly and unexpectedly during the day; I'm wide awake at night. And worst of all, I'm having panic attacks again. The ferocity with which Lyme disease can quickly overpower you when you think you've got a grip on it is staggering. Most people have no idea what a serious disease chronic Lyme disease is!

Despite the major setback, I'm really not as upset as I feel like I should be. Yes, I'm frustrated. Yes, I wish I was better. But honestly, I've been battling this for so long, I've gotten used to taking a lot of detours. And detours only last so long before you get back onto the main road again.

"I may not be there yet, but I'm closer than I was yesterday."  ~Author Unknown