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!