Happy First Birthday!

(photo credit here)

Happy Birthday, Adventures in Lymeland! One year ago today, I started this blog. I'm not really sure which is harder for me to believe--the fact that I've been blogging for so long or the fact that I've been sick for so long.

Through my blog, I've gotten to know so many amazing and courageous Lyme friends that I wouldn't have otherwise met. Having people who truly understand the pain and frustration of living with Lyme disease has been an essential part of my healing journey. The love and encouragement I have received from new friends and old friends all over the world who have read my blog blows me away! I get excited to read each and every comment I receive! (Well, maybe not so much the spam...)

I spent some time today reading through some of my old posts. It was very surreal--my memory has been so greatly affected by Lyme disease that I had absolutely no recollection of writing most of my posts! Did I really make it through so much....crap?! Who was this strong and brave woman I was reading about? Who was this woman, getting knocked down time and again and getting back up every time? Me? Really?!

I've recently started a painful and difficult treatment. I truly believe it's my best option at remission. My closest friends have heard me privately buckling under the strain. "I can't do this anymore!" "I want to quit! Let me throw in the towel, please!" Rereading my old posts-- reacquainting myself with that strong and courageous warrior woman who I forget lives inside of me--has given me renewed strength and hope. I've come too far to give up now!

I love having this blog as a keepsake to relive my forgotten triumphs in my fight to win my health back. Last October, I was almost completely housebound. My pain levels were often unbearable, and I was too sick to handle antibiotics. My failing body was even rejecting my supplements. It was a very scary time!

I've got a long way to go still, but it is so encouraging to see how much ground I've already covered. I look forward to many, many more blog posts! Much love and thanks to all of you! <3

“It is good to have an end to journey towards; but it is the journey that matters in the end." Ursula K. Leguin

We Gallop Away

I close my eyes,
she comes to me;
we gallop away,
above the trees.

On my pony's back
I shall fly;
above the clouds,
away in the sky.

We go to a place
where I'm not sick:
no pills, no pain;
no needles' prick.

We stay awhile,
then I must go.
I know in my heart
she loves me so.

We will fly again
another day.
I wait for her;
she waits for me.

Pot of Gold

I've had two Bicillin injections now. Number three is due tomorrow.  The thoughts are racing through my mind: Will this be the treatment I've been waiting for? Will this finally bring me into remission? Will this be the pot of gold at the end of the rainbow?

Sometimes, I feel like a fish swimming against the impossible current of chronic Lyme disease. Will I get my life back? Will I get better? Will I have to keep swimming forever? Will Bicillin be my miracle?

Mark My Words

I survived my first Bicillin injection on Wednesday! The needle amazingly didn't hurt a bit and it was over in a heartbeat. The site became sore several hours later; not right away like I expected. I figured that I would start Herxing right away, but I actually didn't get really sick until around 10 hours later. I was VERY sick for a few hours--complete with uncontrollable, violent muscle jerking--and I wanted to throw in the towel, but I had a friend with me who helped me through the pain.

Tonight is my second shot. My derriere is pretty sore, and it's going to be very painful when I have to have another shot on that side (we alternate sides every time). I will be getting injections on Mondays, Wednesdays and Fridays from now until question mark. My plan for this weekend is to hole up in my bed and watch a marathon of The Wonder Years on Netflix.

I am so proud of my body for how hard it is fighting this battle. Lyme disease treatment is incredibly difficult, both physically and mentally. But, I am stubborn and strong-willed and I will never, ever give up. Mark my words, I WILL OVERCOME THIS!

"Although the world is full of suffering, it is full also of the overcoming of it." Helen Keller

Doubt

The day before I start a new treatment is always a tangle of emotion: fear, hope, strength, doubt, anger, courage. It is, without fail, a mess of what ifs: What if I can't handle this treatment? What if I can't handle the pain? What if I get too sick? What if I'm not strong enough to do this?

I've wrestled with my demons all day. Courage and strength have been slow to come. How am I supposed to gear up for this painful treatment? How am I supposed to prepare for the strongest treatment that I've ever done--and that may or may not even help, for that matter?

Tonight, I just cannot find peace with having Lyme disease. Sometimes it's all you can do to tuck yourself in bed and know that you gave it your all. Tomorrow is a new day.

My Horse

♥ My Fjóla ♥

"My horse's feet are as swift as rolling thunder
He carries me away from all my fears
And when the world threatens to fall asunder
His mane is there to wipe away my tears."
~Bonnie Lewis

Something to Think About

(Click here for photo credit)

For many people, autumn is hands down their favorite season of the year. What's not to love about the sudden, intense burst of color--reds, yellows and oranges everywhere? After a blisteringly hot summer, the crisp, cool air of fall is a welcome sigh of relief.

When it comes to fall, people think about jumping in leaves, eating pumpkin pie, carving jack-o-lanterns, Halloween, Thanksgiving, warm cider--you know, the good things in life! There's one thing, though, that most people don't think about when it comes to autumn: Lyme disease.

According to David Simser, an entomologist with the Cape Cod, Massachusetts Cooperative Extension, "The adult deer ticks present in autumn are much more likely to be infected with Lyme disease than the younger nymphs prevalent during the peak months of May and June. That's because an adult tick has already feasted on more blood than a nymph, he said, which increases the probability it has picked up Borrelia burgdorferi, or Lyme disease's bacterial culprit."

One place most people don't think about that ticks love to hide out: leaf litter. Who--especially children--doesn't love to jump in a big pile of leaves? You may want to think twice about letting your child jump into that pile of leaves. Make sure to check your child (and yourself) very thoroughly after playing outdoors.

If you do find an attached tick, knowing the proper way to remove it is essential. If incorrectly removed, the tick is likely to expel its bacteria into its host, discrediting the myth that a tick has to be attached for a certain amount of time before it can transmit Lyme disease.  Check out this site for instructions on how to properly remove a tick.

Fear

Yesterday, I was driving across town with my two kids. We were en route to the great little fish market in our town to pick up salmon to cook for dinner. It was raining, but the sun was shining, so I told the kids to look for a rainbow. My older son quickly pointed out a fading double rainbow in the sky. I'm a sucker for rainbows, but this one was hard to see and I recall saying, "I'd better watch the road so we don't wreck!"

Moments later, we got on the interstate and came up over a hill. Suddenly, I saw brake lights in front of me and I realized that the car in front of me had abruptly slammed on their brakes to avoid something. I glanced ahead and saw that traffic in both lanes was completely stopped.

The roads were wet--my least favorite of all driving conditions since I've had two absolutely terrifying car wrecks in the rain (I talk about the other wreck here). I jammed on my brakes as hard as I could and we came mere inches from hitting the car in front of us. As soon as I hit the brakes, I instinctively hit my emergency flashers in an attempt to give the car behind me enough warning to avoid rear-ending us. They slammed to a stop, and I saw in my rear view mirror the car behind them veer off into the grass on the right to avoid missing them.

I heard loud squealing brakes and watched in horror as the cars right behind us in the lane next to us were not so lucky. Three cars veered off to the left to avoid crashing, lost control and went directly into oncoming traffic. According to a local news station, there were six cars involved, but amazingly only one person was transferred to the hospital (with unknown injuries).

It was scary to be right in front of that car wreck. Obviously, it was much better than being in the car wreck, but still, it was a very stark reminder of how truly fragile life is. A traumatic car accident can shatter your peace of mind forever. Having two traumatic car accidents can really do a number on your sanity. Watching helplessly last night as others had a traumatic car accident left me very, very shaken.

My Car--The Organ Donor--After my Car Accident

It could have been us. We could have slid into on-coming traffic. But it wasn't us. We were okay; we are okay. It's hard to feel so vulnerable. I remember how difficult it was for me to get back in a car after both of my car accidents, particularly the second one, because I had been the one driving the vehicle and I had been the one who had to get back in the driver's seat.

It is so easy to let what if fears consume you. What if I hydroplane. What if I wreck again. What if. I came across this beautiful story this morning about a woman who overcame her fear of driving again after her own traumatic car accident.

I don't want to live a life of fear. I don't want to live a life of what ifs. Being human means being vulnerable. You can either let that fear consume you or you can choose to live life to its fullest. The choice is up to each and every one of us.

Toxic

This week, I started a new treatment for my Lyme disease and it's causing an incredibly strong Herxheimer reaction (or Herx, for short). My pain level is extremely high, which is weirdly a good thing in Lyme treatment, because it means the Lyme bacteria is dying.

Understanding a Herx reaction is essential to understanding Lyme disease. It is the key to knowing that the diagnosis is correct. As the Lyme bacteria dies, it releases toxins into your body faster than the body can get rid of the toxins--which causes a major increase in all of your Lyme symptoms (joint pain, muscle pain, headaches, etc.)

As a Lyme patient undergoes treatment and endures a Herx--sometimes called a healing crisis--they need a lot of extra support. It has been compared to chemotherapy because the body is literally being poisoned in order to heal. Herxing can be unbearably painful and can last anywhere from a short amount of time to several weeks.

Unlike chemotherapy, where everyone rallies around a cancer patient and gives them the compassion, support and encouragement they need to get through their incredibly difficult treatments, Lyme patients are often left with little or no support, understanding or compassion. Instead of encouragement, Lyme patients are often met with hostility (especially in the medical field), negativity and disbelief. Even when we are in excruciating pain, we often don't look sick--which, sadly, makes it hard for many people to have compassion.

I have heard a lot--and I mean a lot--of negative things since I received my diagnosis of late-stage Lyme disease. Because Lyme disease is so poorly understood (both in the medical field and among the general public), most people do not--cannot--understand the devastation, the pain, of this disease in its chronic form unless experienced first hand.

I think often of the person who, slightly over a year ago, spewed hateful and thoughtless words to me about my treatment, my children and my doctor. Her poisonous words haunt me to this day, following me around and threatening to make me second guess myself. She hurt me deeply, but I chose to use the pain she caused me for something good--I started this blog to educate others about Lyme disease.

I chose to make my journey public so that others could understand this controversial, politically-charged Lyme disease hell that I, and countless others, are stuck in. Sometimes, though, I feel like people are watching me, waiting for something bad to happen so they can say, "Ha! See, I told you you were on too many medicines!"

Lyme patients get very weary of defending their doctors and treatment plans, and I am no different. Just like a cancer patient finds the best doctor who specializes in treating their cancer, I have researched the best doctor specializing in my disease. My doctor keeps up with the latest research on Lyme disease and the best available treatment options. I have chosen her very carefully and I am in the best of hands. How many of you can say that you truly love your doctor? I can; my doctor saved my life and I am forever grateful for her.

Before I started treatment, I lost the ability to care for myself and my children and I could not cope with the amount of pain I was in. A year and a couple of months after being in treatment, I have made worlds of progress. I can participate in life again and my pain is so much more bearable than it was before I started treatment.

However, my doctor doesn't feel that I am making good enough progress in my treatment for the amount of time I have been on antibiotics. The longest I've been off of antibiotics is two weeks, and the two times that that happened were very difficult and painful. My doctor and I have collectively decided to step up my treatment with intramuscular Bicillin injections--shots to the butt--three times a week, because they cross the blood brain barrier (or BBB).

Crossing the BBB is essential in the case of chronic Lyme disease. Any time Lyme disease has gone untreated for over a year, the Lyme bacteria will have had a chance to disseminate throughout the entire body. Lyme bacteria love to hide deep in tissues; they can and will bore into and attack any organ in the body--the brain included. Oral antibiotics are not able to cross the BBB, so when you attack the Lyme bacteria with oral antibiotics, the Lyme bacteria will run for safety--the brain.

I started oral penicillin this week, and next week I transition to the Bicillin injections. The injections are extremely painful and last several minutes. Any treatment that crosses the BBB causes a major Herx. This treatment is going to be very difficult and I'm going to get much worse before I get better. I'm scared, naturally, but I'm also very hopeful that this treatment will help me go into remission.

Thank you all for all of your love and support. I try my best to focus on the positive and not the negative, but sometimes that's easier said than done. It's hard being stuck in the middle of a controversial disease.

“Do what you can, with what you have, where you are.” Theodore Roosevelt

Sink or Swim

This was one of those days where if you make it out alive, you are highly likely to emerge with a ratty knapsack slung over your shoulder, heaped to the brim with the kind of life lessons you definitely didn't ask for and can only learn from a difficult day. It was most certainly a sink or swim type of day.

There were numerous times throughout the day when I felt myself sinking, sucked under by my uncooperative sickly body and way too much stress for one day. But the good news is, my loved ones really came through for me today. They even tossed out several life boats to me throughout the day. Here are a few of them for your enjoyment!

Life Boat No. 1, sent to me from my hubby:

This amazing comic nearly made me pee my pants with happiness. (Click for more awesomeness!)   

And then, there's Life Boat's No. 2 and 3, sent to me from my friend via text message several weeks ago, but due to a crazy cell phone mix-up, came through today two weeks too late, yet at exactly the right moment. Thank you, weird cell phone mix-up! These are titled WHAT WE DO WHEN WE ARE BORED AT WORK and the friend who sent these may or may not work at a certain (Unmentionable) Packing Store, which may or may not be what makes them so funny to me.

Pac Man/ Packing Peanut Man

ARRRRRR, Matey!

Life Boat No. 4:  Comfort food for dinner! Chicken with broccoli and General Tso's chicken. (Yeah, I'm adventurous.) What healthy Chinese food meal would be complete without fortune cookie time? Okay, so I actually can't stand the "cookies"; they taste like dog biscuits and I give them to my dog. But, here was my fortune: Your problem just became your stepping stone. Catch the moment.
Cheesy, just the way I like it. 


So, what did I learn today?
-My friends are awesome!
-If you eat too much comfort food, it's no longer comforting.
-I am loved!
-Sometimes, even cats have bad days.

Beginnings, Endings and Peace

Tonight, I held my friends' newborn son for the first time. I looked down upon his peaceful, sleeping face. There's nothing closer to perfection in this world than touching the velvety soft skin of a baby's head. Welcome to the world, little baby Elias Jack, I thought. My thoughts were immediately interrupted by sadness: When I started getting sick in 2009, I first thought I was pregnant. I was convinced and I was overjoyed.

Dizziness, nausea, painful breasts, exhaustion, check! But things went downhill quickly, and it was unmistakeable that, despite the initial similarity in symptoms, I was very much not pregnant. Bizarre symptoms popped up and the dream of a baby was shattered like a miscarriage.

In place of happy baby news, the test results were not good: I had late-stage Lyme disease. Then came the worst part: Because I had gone mis/undiagnosed for so many years, the Lyme disease had crossed the placenta during my two pregnancies (in 2003 and 2007), and I had unknowingly exposed my precious babies to the most controversial disease of our time. Both children are positive, not only for Lyme disease, but for multiple other tick-borne diseases.
 
I had a deep internal struggle tonight about whether or not to hold baby Elias. I knew that it would tug at my heartstrings and if you take one look at the picture below, you will see the look in my eyes. We wanted one more child. Our family wasn't finished. Lyme disease took that from us.

I am blessed beyond words to already have my two wonderful sons. Had I had a name for the ridiculously long collection of symptoms that I had been dragging around with me for years--Lyme disease--my children would not have been born. I would not have taken the risk of passing on Lyme disease and multiple other tick-borne infections to any child. 

While there's nothing closer to perfection than feeling the velvety soft skin of your own sweet baby's head, sometimes it's enough to hold onto someone else's dream for just a moment, touching the velvety soft skin of their baby and breathing in all of their hopes and dreams for that little baby. Sometimes it's exactly enough to remind you just how perfect and beautiful life truly is. That little baby put a band-aid on my heart. 

 You are amazing, little Elias J.! Now, go conquer the world!

"Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies."  ~Erich Fromm



FOR MORE INFORMATION ON PEDIATRIC AND CONGENITAL LYME DISEASE, PLEASE CLICK HERE.

Lyme Disease and Alzheimer's Disease

Several months ago, I had an experience where I ran into someone who appeared to know me quite well, but I had no idea who the person was, how I knew her, or how well I knew her. While everyone occasionally forgets names and faces, this was much different. In fact, it was downright scary. For me, it felt like I was looking Alzheimer's disease in the face.

We engaged in a conversation lasting approximately 10 minutes, with me trying desperately to figure out from context clues who this person was! I couldn't piece it together, and, about 20 minutes after parting with her, something in my brain woke up and I realized exactly who she was, how I knew her, and how well I knew her. She was an old neighbor, a person I saw on a near daily basis for a few years.

The whole incident was very traumatic and left me feeling like Lyme disease had stripped me of any semblance of control over my body. While I have made great strides of improvement in my health since that time, today, however, as I near the two week marker of being off of antibiotics, I found myself in the same horrifying situation once again.

I knew that I knew this person. The face was very familiar. And I knew that this person had some connection to my husband--which was more clues than I had the first time--but other than that, all details were erased from my brain. This time, it took nearly eight hours for my brain to snap back to Earth and reveal the identity of the mystery person. The name popped in my head and all details were suddenly back again. This was someone who I had hung out with several times; someone who had visited my house on multiple occasions.

On many occasions, I have felt like I have Alzheimer's disease.  In 2006 (I might be wrong about that year!), Dr. Alan MacDonald found a link between Lyme disease and Alzheimer's disease when he found Lyme spirochetes in the brains of seven out of ten victims of Alzheimer's. Dr. MacDonald passed away in 2008, ironically from Alzheimer's, but his work is being continued by other researchers.

My Alzheimer's-like episode today had me thinking about all of this, and in my research for this blog, I came across this article saying that Alzheimer's may be transmissible, and may in fact be the result of an infection.   

Lyme disease is commonly misdiagnosed as Alzheimer's disease. It sure makes you wonder....

Dreaming of Green

I am dreaming of the day when undiagnosed Lyme patients can simply go to the doctor and get properly diagnosed and treated. Awareness for Lyme disease is so poor, that a huge majority of people with Lyme disease--myself included--get diagnosed only after talking with someone else with Lyme disease.

Every doctor and specialist I saw said, "There's nothing wrong with you."  "Well, then why can I barely walk? Why this bone-crushing pain? Why??!" I wondered and sometimes asked the doctors. I had given up on doctors when, as fate would have it, I bumped into an old friend who happens to have Lyme disease.

The inevitable question came up that you come to dread when you don't feel well: How have you been? Prompted by my friend, my story came tearfully rushing out. But instead of having one more person flatly deny, "There's nothing wrong with you," I was answered with kindness, "Your symptoms are the same as mine were. We have to get you tested for Lyme!"

My test came back highly positive for Lyme disease and multiple other tick-borne diseases. My friend on the street could recognize Lyme disease in me, yet doctor after doctor, specialist after specialist couldn't recognize it!

I am dreaming of the day when psychiatrists know to ask their patients, "Have you had a tick bite recently or traveled to an endemic area?" Panic attacks, anxiety, depression and agoraphobia can all be symptoms of tick-borne diseases like Lyme disease. I went to a psychiatrist in 2001--shortly after a tick bite--to seek help for a sudden case of agoraphobia, severe separation anxiety from my husband, severe depression and panic attacks.

Had the psychiatrist known to ask me if I had had a recent tick bite, maybe it would have been early enough that I could have been cured of my Lyme disease. And even if it was too late to be cured, I still could have learned how to protect my not-yet-born children from being exposed to multiple tick-borne illnesses in utero.

I am dreaming of the day when midwives and obstetricians routinely ask their patients if they've recently had a tick bite or traveled to an endemic area. This simple question could save countless babies from this rapidly growing and silent epidemic. Congenital Lyme disease is not something you ever, ever want to experience, but it's happening more and more.

It's frustrating waiting for increased awareness of Lyme disease. Lyme green would definitely look pretty next to the pink breast cancer awareness products sweeping the nation, but I'm getting tired of waiting for the sea of Lyme green to hit the shelves. (Bring it on!)

While we wait for the world to finally take notice of the Lyme epidemic, the number of endemic states is rapidly escalating. While we wait, more and more mothers unknowingly pass Lyme disease on to their unborn children. While we wait, you or someone you love may become infected with Lyme disease.

If caught early enough, Lyme disease is usually curable. How sure are you that your doctor knows the facts? Are you willing to bet your health to find out? According to one study, the average person with Lyme goes 22 months and 7 doctors before getting properly diagnosed. Add in the fact that Lyme disease is more prevalent than AIDS and you may begin to see why those of us with Lyme disease are getting very antsy waiting for our "silent epidemic" to finally receive its voice.

Let the sea of Lyme green begin!