Pet Therapy

I love writing about the "magical" healing that happens in my body when I am atop my dear Icelandic horse. When I am on Fjóla, I am usually free from the pain of my Lyme disease; the second my feet hit the ground, my pain comes back. If I could live on my horse, I would!

Swimming with Fjóla

Fjóla is the most affectionate horse I've ever known. She comes galloping to the gate when she sees me, she follows me around like a puppy and she stands at the gate staring at me in disbelief when I return her to her pasture. Nothing spooks her and from the first day that I met her, when she wrapped her neck around my body in a horsey hug, I knew that she had qualities that would make her an excellent candidate for pet therapy. One day, when I am not so sick from Lyme disease, I really hope Fjóla and I can pursue that option.

For now, I get my "kicks" from following a Facebook page called Gentle Carousel Miniature Therapy Horses. Their adorable mini-horses travel to hospitals, nursing homes, etc. and the smiles on the faces of all--young and old alike--who meet their adorable horses are simply incredible. These horses bring such joy into the lives of those they come to comfort.

I, like the rest of the country, have been in anguish over the recent shootings at Sandy Hook Elementary. My heart feels like it has been ripped out of my chest and put through a shredder. I can't even begin to comprehend the grief of those in Newtown. If I could scoop up the whole town into my arms and hold them tight, I would. Like everyone else, I feel so helpless.

Two days ago, something in my newsfeed on Facebook caught my eye: It was a photo of one of the little horses from Gentle Carousel Miniature Therapy Horses, and I learned that they were trying to find a way to take a team of their horses to Newtown, Connecticut. Yesterday, I learned that a group of school children and faculty in Connecticut collected a large amount of money in an effort to make that happen.

I know so many people want to help those affected by this heartbreaking tragedy, but don't know how. If you visit Gentle Carousel Mini Horses website here, there is a link where you can make a donation to help with the expenses of making this miracle happen. The thought of all of those children getting to see and hug these little horses, perhaps even in their school--a place now shrouded in anxiety--will bring such peace and joy and begin to pave the way for healing.

Magic, one of the Gentle Carousel Horses they are trying to bring to Connecticut. Please visit  www.horse-therapy.org to meet more of their incredible horses.

The children of Newtown have had their peace of mind taken away by a human being; what better way to help them heal than through the unconditional love of animals. Any amount of money you can donate to this awesome cause helps. One little girl even donated her entire allowance--one dollar--to try to help make this miracle trip happen.

Newtown, we love you so much and our hearts are breaking for you!




 "The best thing for the inside of a man is the outside of a horse." --Ronald Reagan

Don't PICC On Me!

While most people will be kicking off the new year with high hopes and sparkly new resolutions, I will most likely be kicking off early 2013 with a PICC line in my arm. I know I need to do this, but I'm really struggling to accept getting a PICC line. Lyme disease has me in a headlock and I'm crying uncle; I know this is the next step, but, but, but...

The things that I love to do are going to be greatly hindered, if not right smack at the tippy-top of the No-No List with a PICC line: being at the barn/riding my horse, playing my drums, hula hooping. Though we don't know for sure at this point, I'm told I could possibly have my PICC line for six months. There's no way around the fact that this treatment is going to be difficult and inconvenient.

Someone once told me that I have a very creative way of solving problems. That may have been a polite way of saying that I am headstrong, stubborn and persistent. Lucky for me, in the case of chronic illness, those are pretty good traits to have! They help me to endure when life is throwing lemons (and Lyme!) at me.

If you tell me I can't play drums because I have a PICC line in my arm, I will tell you that the drummer from Def Leopard only had one arm. If he could drums with only one arm, so can I! (Apologies in advance to my neighbors!) If you tell me I can't hula hoop around my upper body, I will tell you I can hula hoop with my lower body. I've even seen people do some pretty cool hooping tricks with their feet!

I don't want to put myself in an environment where I am putting myself at a great risk for infection because of my PICC line, but if you tell me I can't be at the barn, well, my heart will break into a thousand pieces. I will probably show up at the barn anyway, maybe in a biohazard suit or perhaps with my arm wrapped in bubble wrap. If you tell me I can't ride my horse, I will tell you I can still groom my horse. And if you tell me I can't groom my horse, I will tell you I can still bring a blanket and lie in the grass next to her. I will find a way to do the things I love to do. (These same traits make me a rather difficult patient for my poor doctor, sometimes.)

Is it any wonder that today, I randomly came across this quote that I love: Don't let what you cannot do interfere with what you can do. While I haven't quite come to terms with having to get a PICC line, I am taking baby steps toward acceptance and I know that I will find a way to do the things that my heart needs to do to make it through the dark days of treatment. I will find a way. 

A Horse is a Horse, Of Course!

Here's an interesting lesson I learned yesterday: Don't ever ask a horse a question if you're not prepared for the answer. I had a tender heart-to-heart with my wise Icelandic horse, Fjóla, and her response to my dilemma was, um, well...quite unique. But, first, let me recap what has been going on.

I've had a very severe decline in my health, and my current treatment (intramuscular injections) for my Lyme disease is no longer working. Treating a very complicated case of Lyme disease along with multiple other tick-borne diseases is very difficult and it's common to hit a plateau (sometimes multiple times) during treatment. If one thing doesn't work anymore, then you have to try something else.

The disease is running rampant through my body and my shots are no longer helping. I'm in severe pain again and I have to push myself very hard just to function at a rather depressing level, but at this point I am still able to function and for that I am very grateful. I want to avoid at all costs going back to that very dark place where I am bed-ridden again and I feel like it's coming soon if I don't take action.

My doctor has been telling me for months that she thinks I need a PICC line, and I think I am finally coming to terms that it's coming to that. My neurological symptoms are very, very bad and sometimes I have great difficulty with my speech and I feel drunk. My memory is deteriorating rapidly and I am starting to feel like an Alzheimer's patient again.

I'm very, very, VERY scared of getting a PICC line, but right now it's one of my best options for remission. There are many serious risks involved so I have been painstakingly weighing the pros and cons, but at this point, my disease is winning and I am being robbed of the ability to function without severe pain. I am a fighter and I have not come this far to give up. I will do what it takes to get better!

This decision is not an easy one and I know that many of you will be very concerned by the risks associated with a PICC line and may not understand my decision to go this route (if I do). I still have many unanswered questions myself and much research to do before my decision is finalized, but I am leaning heavily toward this option.

Back to my experience with my horse, Fjóla  yesterday. I drug myself out to the barn hoping a little horse therapy would do me good, but by the time I got there I was so exhausted I had to lay in the car with my feet propped up before I could get out. She saw me coming and came running and calling to me, which makes me smile no matter how sick I feel! I got her out of her pasture and really wanted to ride her, but all I could do was alternate between brushing her and then resting while she grazed.

I ran out of steam pretty quickly, so I put her back in her pasture and she did what she always does, which completely melts my heart--she stayed by the gate staring at me in disbelief like, "Are you sure you're done playing with me?!" So I sat down on a big rock in her pasture and she opted to stay by my side, instead of following her horse friends to the other side of the field. She stood as close to me as possible and I swear this horse was never given the message that she is not a lap dog!

So, since she apparently wanted to help, I told her my troubles. I told her I didn't know what to do about the PICC line and I told her how I was just so damn tired of feeling so horrible day after day. I cried and she nuzzled and snuffed my face and shared some disgusting bits of pre-chewed grass. (Don't worry, I lovingly declined the gesture!)

And then I said, "Fjóla, I just don't know what to do! What do I do?!" And then? She walked to her water trough, took a huge drink of water, came back to me and suddenly released the entire contents of her unswallowed drink of water/chewed up grass all over my lap! If you didn't know, horses can hold a lot of water in their mouth...

So, yeah, ask a horse a question and it may not be the answer you're looking for. But I got the feeling that she was saying, "Pal, whatever will be, will be. I can't decide for you; I'm a horse! But whatever you decide to do, I will be here for you, because I love you."

Playing soccer on Fjóla

Santa Claus, Please Accept My Heartfelt Apology

I have a confession to make: Today, I made Santa Claus cry. But, in my defense, he does have a very big heart! You see, today my family and I went on a trolley ride with Santa. As you can imagine, it was a whole lot of fun for both young and old alike.

When it was our turn, Santa asked my kids if they were good and also asked what they wanted for Christmas. And then, well...Then he asked me the same questions. And suddenly, without realizing what I was doing, I looked poor dear Santa Claus right in the eyes and choked through my tears, "Please Santa, I'm very sick, and all I want for Christmas this year is a cure for Lyme disease."

And Santa--sweet, jolly Santa--looked back at me with big tears in his eyes, caught completely and utterly off guard.  Oh dear lord, what have I just done?? I just made jolly old Saint Nick cry! He didn't know what to say; and I don't blame him. Now I know why he only asks kids what they want for Christmas!

So let me just take this minute to apologize:

Dear Santa,
I'm sorry I made you cry.

Love,
Alyson

PS Thanks for my pony.
PPS I will leave you extra cookies this year.

Finding Peace

I've hit a rough patch in my battle against Lyme disease. I was doing so well, and then, suddenly, not well. These past few weeks have been a struggle and I've been frustrated and very sad with how quickly and unexpectedly things went downhill.

No matter how I try to shake it off, this question just keeps haunting me: Is the rest of my life going to be this incredible struggle with my health? I wish I knew the answer to that question, but I don't; my answer differs depending on how I'm feeling at the moment.

I realized something very important yesterday: This journey I am on is not about whether or not I am cured; it's about learning to be at peace with my body regardless of whether I am sick or well. Much as I wish there were, there is no magical handbook on what to do when faced with chronic illness. I only have this blog where I can record and revisit the lessons I have learned that have brought me where I am today.

Being on the right path toward being at peace in my body means accepting the things that I cannot change. No matter how much I struggle against it, I cannot change the fact that I am battling a very severe illness and I cannot change the fact that my health is in an unpredictable state right now. But I can change my attitude toward these things.

Whether or not I am one day cured, I can still be grateful toward my body right now for all it has done for me. My days may not look like what I want them to look like right now, but that does not mean that I will let them slip by without soaking up as much joy as I possibly can. It's not easy, but I am trying. I am trying.

"If you ask me what I came into this life to do, I will tell you: I came to live out loud."~Émile Zola

Vitamin K Deficiency

A few days ago, a friend sent me an email saying that she recently learned in a nutrition class that long-term antibiotic use can cause a Vitamin K deficiency and she asked me to look up the symptoms to see if it sounded like something I might have. I hadn't heard of it, so I looked it up. Three days later, I had something very scary happen to me (trust me, you most likely don't want to hear about it) that made me extremely glad to have my friend looking out for me...

Vitamin K is important for helping your blood clot normally, so people with a deficiency can have excessive bleeding from cuts. Long term antibiotics (especially cephalosporins) can deplete your body of Vitamin K, and, ladies, one of the ways a Vitamin K deficiency can manifest is as heavy periods.

I've been noticing an increasing trouble in getting my blood to clot after my shots. As I said, I also had something very scary happen to me a few days ago that made me practically run to my doctor's office begging for a test for a Vitamin K deficiency. I am anxiously awaiting the results, thanking my lucky stars for the timing of my friend's email on Vitamin K, and I will keep you all updated on my results.

For those of you on long-term antibiotics or simply concerned about a deficiency in this vitamin, here is a list of the top ten foods highest in Vitamin K. Maybe this is why I've been craving asparagus lately (and absolutely nothing to do with why I've been craving ice cream!)

(Photo Credit here)

Acupuncture

Recently, a few of my dear friends ganged up on me and somehow managed to persuade me into trying a new doctor for treatment of my chronic Lyme disease. This doctor has degrees in both Eastern and Western medicine, and, although he came highly recommended to me, the thought of going to even one more doctor sounded like about as much fun as getting a root canal. But a tiny little voice inside of me said, "Go." So, I went.

"Can you stick out your tongue, please?" Dr. L. asked. After a brief peek at my lovely lengua, the doctor told me with a concerned look on his face that I had blood clots. Yikes! "And you have very poor circulation," he went on. I suppose that may have something to do with why I always feel like I'm in Antarctica even in the summer time. 

Dr. L. did acupuncture on me and I was literally bouncing off the walls for six glorious hours. And that's all it took to convince me that this is a doctor who can really help me. I've been seeing him twice a week for two weeks now. And I feel amazing! I expected that he would tell me to stop taking antibiotics and that they are killing my body. On the contrary, he believes that there is no way you can heal from Lyme without antibiotics!

I will be seeing Dr. L. in conjunction with my regular LLMD (Lyme literate doctor). I've tried acupuncture for my Lyme disease in the past (with a different acupuncturist) and really didn't notice much of a difference, but I cannot believe the difference in my body from only two weeks with Dr. L. My energy is back and I can function again. I'm able to fall asleep at a normal hour and have been able to wake up easier in the mornings, for the first time in years!! And--drumroll, please--I haven't had any of my seizure-like episodes since seeing Dr. L.!

 A normal visit with Dr. L. entails acupuncture, laying on an acupressure table (heavenly!) and jade hot stone therapy. He highly recommended that I get an acupressure mat to lay on at home, which I did (thanks, mom!), and it makes a big difference. Dr. L. has seen big improvements in his Lyme patients who lay on spiky acupressure mats, like the Spoonk or the Nayoya Acupressure Mat. (I, personally, chose the Nayoya mat and neck pillow, and I really love it, but it definitely takes some getting used to! You're laying on hard plastic spikes and you have to build up a tolerance to it. It really does help my pain levels, though.)

I also have seeds (yes, you read that right!) taped to my ear to help me locate six acupressure points in my body. I am supposed to stimulate the acupressure points at least five times throughout the day. I feel like a Chia Pet!

I am very blessed to have a darn good trio of doctors working to get me better--my Lyme doctor, my acupuncturist and my neurologist. I am in good hands and I feel in my heart that these three are going to give me my life back.

Greedy

Improvement from Lyme disease is a strange and slow process. I haven't had as many of my seizure-like episodes; however, I am still having them. My energy has increased dramatically, but it comes and goes in the blink of an eye. I still have huge Lyme crashes from out of nowhere, ravaging my body with a barrage of fatigue and pain (usually lasting for a few hours at a time).

Tired of being sick, I've been greedily snatching up bursts of energy like a little kid let loose in a candy store. I've ridden my horse a few times in the past week. I've worn circles in the ground, spinning around and around with my hula hoop. Yes, I love to hula hoop; so much so, in fact, that I combined the two a few days ago and hula hooped on my horse!

Hula Hooping (minus the horse, of course)

My Happy Place!

I even got to go camping this weekend. Ever so slowly, I can feel my body starting to fight back against this dreadful disease and I can feel my Bicillin injections starting to work their magic.

Living with Lyme disease has been such a difficult journey these past few years, but it has truly opened my eyes to the beauty of life. When you have to fight every single day of your life to be able to do the things you love, they become treasured and no longer taken for granted. I hope I never forget the painfully beautiful lessons I've learned from my trek through Lymeland.

Me with my blind dog, Maya, who has taught me a thing or two about overcoming! 

A Fighting Chance

Emu! Photo credit for this amazing shot here.

An emu is a very funny looking bird. It's also the name of the place where I spent my Labor Day weekend--the EMU, aka the Epilepsy Monitoring Unit. Sadly, there were no emus there. But with my wires and electrodes, I was about as funny looking as an emu!

All in all, there were 24 electrodes on my head and 6 on my chest.

Being in the hospital is rough. Being in the hospital with a controversial disease is a nightmare. (I have chronic Lyme disease if you're just tuning in to my blog.) I was treated respectfully, but the neurologists did make their beliefs on Lyme disease known to me. "You do know Lyme disease is a very controversial topic, don't you?" "Lyme disease is eradicated with a short course of antibiotics; after that you're fine. There is something called Post-Treatment Syndrome, but that's pretty rare." "We don't understand why you're having these "spells," but we can send you to a psychiatrist if you like."

It wasn't pleasant, but I survived my stay in the EMU-with-no-emus and I had two episodes while there. I found out today that the results of my video-monitoring EEG were completely normal; I am not having epileptic seizures. What a blessing!

However, if not for one thing, I would be very upset since being sent home from the EMU with nothing other than a (rejected) referral for a psychiatrist. That one thing? I had an appointment today with a Lyme-friendly neurologist. Other than my Lyme doctor, this was the only doctor that I have ever been to since my diagnosis who was extremely knowledgeable about Lyme disease and just how badly it can ravage the body and brain.

I cannot describe the feelings I felt today, seeing this neurologist who not only validated the immense suffering that I have been through, but told of other Lyme patients with similar things going on. This was a doctor who, instead of washing his hands of a patient with Lyme disease, was not afraid to say that there is so much that is still unknown about Lyme disease. This was a doctor who treats patients with Lyme disease instead of shoving them out the door, leaving them feeling baffled and discredited.

The neurologist said my episodes are a type of hyperkinetic movement disorder, which is caused by a problem in the basal ganglia part of the brain. I've had a very exhausting several days and my brain is struggling to wrap up this post. It's getting extremely difficult for me to write, but I really wanted to put out an update tonight, because I know a lot of family members and friends are waiting to hear what is going on.

In a nutshell, we don't know exactly what is causing my episodes. It is highly likely that they are being caused either by my Lyme disease or another tick-borne disease that I have called Bartonella (to which I believe I was very recently reinfected). The episodes may go away on their own or they may get worse; at this point, we don't know. What I do know is that I feel like I actually have a fighting chance now knowing that there are still doctors out there like my Lyme doctor and my neurologist who aren't giving up on me or others with this incredibly complex and misunderstood disease.

I have two options right now. I can do a short course of steroids (which is generally contraindicated with Lyme disease) or I can take anti-seizures medicines, which has proven to be helpful in treating these, uh, I don't even know what to call them anymore...these things. My brain is shutting down now. I need to go to sleep.

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!

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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!

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* 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

The Very Things That Held You Down

When I was at my sickest with Lyme disease, I was angry and depressed. I was frustrated with being in pain every day. I hated not knowing if I was going to get better or not. I was miserable and grieving my old life--I wanted my freedom back from being sick!

During that rough time of my life, one of my best friends--knowing how much I love quotes--gave me a little plaque with this quote by Dumbo on it: "The very things that held you down are going to carry you up." Though I've never been a fan of animated Disney movies, it was a very thoughtful gift, and there's not a doubt in my mind that my friend knew what she was doing when she gave me that particular quote!

But to be honest, it hit too close to home for me. It made me squirm. It meant finding peace in the midst of chaos; it meant not only accepting my illness, but also learning from it and growing from it. Even though it made me uncomfortable, I displayed that little quote right above my bathroom sink where I would see it several times a day. And every single day--whether sick or well, happy or sad--I read and reread that quote, "The very things that held you down are going to carry you up."

I looked at that quote tonight while brushing my teeth, and thought about how that one little sentence has guided me over my journey with Lyme disease. Last night I reread an old blog post that I wrote called The Courage to be Sick. I wrote that a week after one of the most traumatic experiences of my life, and though I didn't see it at the time, that post could not have been a more perfect example of how the very thing that was holding me down was already carrying me up.

My little plaque is completely beat up, withered and fading, but still standing. Just like me.

Total Extinction

It's time for me to begin weaning myself off of my three times a week Bicillin injections for treatment of my chronic Lyme disease. Now, you would think that this would be the kind of change I'd be jumping for joy at. I mean, seriously, who wouldn't want to ditch several-minutes-long, pain-in-the-butt (literally and figuratively!) shots three times a week?! Me, apparently! Change means facing the unknown, and for me the unknown means changing a treatment that is working really, really well.

Monday was my 72nd shot--the six month marker for me. I had been working toward that goal, well, for six months, obviously. My friend and I joked that I would reach "total extinction" (remission) at the six month point. While I wasn't magically healed by the 72nd shot, I cannot deny that these shots have brought me farther than any other treatment I've done.

Alas, I am not in remission, and that means--like it or not--it is time for me to soldier on with the next part of my treatment. Last night was my first (planned) night skipping a shot and I was terrified of how my body would respond to this change. I worried myself into a panic yesterday.

Sometimes, you have to learn a lesson over and over before it sinks in: When you dwell on fear, it grows and grows. I realized last night that I was unconsciously choosing to make the fear of the unknown a thousand times worse than facing the actual experience, and that was the last thing I wanted to do.

I decided today I needed a change in attitude, and I must say, when you go looking for motivation instead of dwelling on fear, motivation has a way of making you look like quite the fool! I took myself out to lunch alone today--a very rare occasion for me, since I'm the mother of two young kids--and I noticed that the man sitting at the table next to me was sporting a neck brace, an eye patch and a cast on his arm.

Poor guy, I thought to myself. But then I realized that I was the miserable one feeling sorry for myself, despite the fact that I was still feeling pretty decent considering the skipped shot. This man was smiling, laughing and having a wonderful lunch with a friend. If I didn't think it would break him, I probably would have gotten up and hugged him!
 
Well, what can I say? I learn my lessons the hard way! Don't most of us, though? Anyway, enough feeling sorry for myself; enough moping about having to be sick for a while again (So we meet again, Flagyl!). Enough! It's time to move forward.

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” Helen Keller