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!