Saturday, December 31, 2011

Inspiration

I was sick with Lyme disease for many months before I developed joint pain in my hands. Shortly before the pain set in, I noticed that my fingers were starting to change shape--a noticeable curvature--especially in the last two fingers on each hand.

At that point, I didn't know that what I had was Lyme disease--the doctors said it was mono and no one had any reason to believe otherwise. My bizarre symptoms, however, became less and less "mono-esque," and, ironically, I was taken less and less seriously.

I was sent to a rheumatologist, who, after reviewing my blood work (which had all come back normal) and then hearing about the changes taking place in my hands, dismissed me away with a sigh, and--this is a direct quote-- "Sometimes, when we don't feel well, we notice things about our bodies that we wouldn't normally notice."  Ouch!

Interesting how only a few days later, the throbbing, aching, pins-and-needles feeling set into the joints in my fingers. I didn't know what was happening to my body and I was scared. I thought about all the things that I loved to do with my hands--play guitar, make bread, sew, etc.--and I panicked. Would I still be able to do those things?? When I tried, my hands stung so badly.

I have played guitar since I was 15. I can't say that I'm even remotely good, despite all that time playing; however, I still love to play. It is one of my favorite outlets. As my body started going more and more haywire, I wanted to turn to my guitar more than ever, but because of the joint pain in my hands, I couldn't. Since no one could find anything actually wrong with me, I easily assumed that I would be plagued with joint pain for the rest of my life.

My heart sunk at the thought of not being able to play guitar again (among other things) without pain. And that is when one of my best friends told me something has inspired me through my journey with Lyme disease more than anything else. "You know about Django Reinhardt--the famous jazz guitarist, right?" my friend asked me. "No, I don't think so."  "He was badly burned in a fire and the doctors told him he would never play guitar again. He learned how to play the guitar again with only two fingers!"

Django Reinhardt (Photo Credit here)

Who was I to complain after listening to Django Reinhardt play his heart out with only two fingers! "With rehabilitation and practice he relearned his craft in a completely new way, even as his third and fourth fingers remained partially paralysed. He played all of his guitar solos with only two fingers, and used the two injured digits only for chord work." If Django could do that, why on earth was I letting Lyme disease stop me from doing what I loved to do?!

Life is interesting, isn't it? There are people in this world that have the power to make you doubt yourself (like the hurtful rheumatologist that I encountered) and there are people who will remind you that you can do anything--anything--in this world, if you just believe in yourself. Don't let anyone--especially yourself--fool you into thinking you can't do something. Like Django, look for your own way of doing things.

Tonight, as I prepared to ring in a brand new year after this year packed full of both the most intense and triumphant struggles of my life, I played my guitar by candle light for nearly two hours. I played for Django. I played for myself. I played for my friend who showed me how to believe in myself again. I played for my friends with Lyme disease who have forgotten to believe in themselves. Remember to play your heart out in 2012, no matter what life throws at you!

What the World Needs

Photo Credit
"Don't ask yourself what the world needs; ask yourself what makes you come alive.  And then go and do that.  Because what the world needs is people who have come alive."  Howard Thurman





Monday, December 26, 2011

Messages to Myself

These past few weeks have been very difficult. They have been peppered with intense "Lyme crashes"--moments where I go from feeling fine to suddenly being rendered entirely unable to move for up to a few hours at a time.

Today, though, for the first time in a long time, I had an entire day with relatively stable and low pain levels--meaning no Lyme crashes and no going up and down on the Lyme carousel! I was not only able to go see my beloved horse this afternoon, but I was also able to ride her! My happy meter went all the way back up to the top! (I like this paragraph full of happy exclamation points!)

Because I've been so sick lately, I've had such a hard time writing. I've started so many posts that have gone nowhere. That's usually a sign that my old friend Bad Attitude is trying to creep in on me. I don't want to let the difficulties of chronic illness blind me to the many joys and blessings in my life, especially when things are tough. Those are the times when you can learn the most beautiful lessons about yourself.

Since I've felt negativity sneaking in, I've been taking the time to reread and remember many of the difficult, but amazing lessons I've learned. I have very little memory of writing the majority of my blog posts because of severe memory loss from my Lyme disease. 

One of the posts that stands out to me the most is one that I wrote when I was at my sickest. My weight had dipped down to 100lbs and I was so weak that I had to stop treatment, even my supplements. Yet, I saw so much strength in myself at my weakest moment. If I had given up then, I would have missed out on so much! I would have missed seeing my dream come trueFriends, remember: Never, ever give up!  Beautiful things are waiting for you just around the corner!

Sunday, December 18, 2011

Chosen

I've been down hard lately, but today--after two very, very long weeks and a heart dangerously close to breaking--I was finally well enough to go see my beloved horse, Fjóla, for a few blissful minutes. She's a very affectionate horse and always meets me at the gate. Tonight, though, she was so happy to see me that she came tölting up to meet me at the gate!

Fjóla
Sometimes I catch myself wondering if I did the right thing by getting another horse while I'm still so sick, but then when I see her, Fjóla's love for me erases every bit of doubt right out of my mind and fills my heart with peace. How can I forget about the first time I met her--when she wrapped her neck around my body in a beautiful horsey hug? That little horsey had me at hello!

I cried with joy at seeing my little pony again today. After seeing her for only a short time, I felt as though I had all the fight put back in my body. I didn't realize how drained I had been until I walked away from the barn with the spring back in my step. Fjóla picked me to be hers for a reason. Being chosen and loved unconditionally by an animal is truly one of life's greatest blessings.
 
Now I'm ready to fight even harder than ever. It's been a rough few weeks, but I just keep putting one hoof--er, foot--in front of the other and with every step, I know I'm one step closer to recovery. Thank you to my little Fjóla for renewing my weary spirit!

Monday, December 12, 2011

Dream Visitors

Shortly after I wrote yesterday's post, I got really sick again. I ended up spending the rest of the day in bed. Every time I tried to get up, I felt like passing out. I called my doctor last night in tears, and, thankfully, she was able to work me into her schedule today. (I love my doctor!)

I went to her office this morning and she wanted me to have IV fluids. It wasn't so bad, really. I had a warm blanket, a heater and a very kind nurse that brought me mini-cupcakes! There's no way I'd ever turn down cupcakes for breakfast!

Why, yes I did take pictures!
My doctor is having me cut back on my Cowden Protocol--an herbal treatment I am taking for my chronic Lyme disease. I also had lots of blood work done. I've had a really tough few days, but my friends keep reminding me that I'm pretty tough. I know that this is just a bump in the road, and--hard as it is--I'm trying not to lose perspective on that. 

I was so sad yesterday that I wasn't able to make it out to see my horse, Fjóla, but then I was blessed with the most incredible dream last night--not only about Fjóla, but also about my old horse, Shiloh. Shiloh came to me and galloped me away from all my worries and pain. We galloped as fast as we could, until she began to grow tired. Then her friend Fjóla came to take over Shiloh's job of taking care of me. Fjóla's job was to go at a much slower pace--through the thick branches and steep, dangerous, rocky terrain. I woke with peace in my heart; I always did know horses were magic!
Aly and Shiloh, a handful of years ago

Sunday, December 11, 2011

Crazy Week

Earlier in the week, I was driving down the interstate when my car hood flew up, shattering the windshield and completely blinding me. Amazingly, I was able to get safely off the road without wrecking, but I was quite shaken up, and the sound of shattering glass took me straight back to my car wreck a few years ago. Needless to say, I've had a more stressful than normal week and my body is feeling the effects of it.

Like a stalker lurking in the shadows, my Lyme disease was waiting for just such an opportunity to take advantage of the extra stress load on my body. My list of current symptoms is growing faster than a pregnant woman binge eating on ice cream, and I've been reacquainted with a slew of old symptoms that have been silent for months.

I did have some "good" days thrown into my kind-of-crazy week. I was able to make dinner a few times, which was great because I love to cook, but am not able to do it much anymore. I even had one day where I felt good enough to clean the microwave--a task that is way down at the bottom of the list of things to catch up on when chronic illness lives in the house. No one has ever been more excited to scrub a disgusting, germy mess before, and I'm certain I heard the microwave let out a big sigh of relief at being sparkling clean again.

I had a lovely visit with my horse earlier in the week. I got to ride and bask in a rare 65 degree sunshiney day. I've been riding Fjóla--although not nearly as much as I wish--bareback, bridleless and without reins. It is truly amazing. She really is my equine soul mate and I can't believe how lucky I am that she's mine (and I am hers!).

Yesterday, I was very sick and was bed-bound the whole day. Even though it was a difficult day, it was still a beautiful reminder of just how much progress I've made. Sometimes, a little perspective is not a bad thing. I've learned enough from this disease to know that every day is a completely new and different day; just because I'm laid up one day, doesn't mean that I will be laid up the next day. And just because I'm hurting one moment, doesn't mean I will be hurting the next moment.

Today, I'm up and about again. I'm achy, but I'm not bed-bound. I'm going to take it easy today, but I have my fingers crossed that this day includes a great big hug to my favorite little pony.

Saturday, December 3, 2011

Purple Flower

I've hit a rough patch in my treatment for Lyme disease. I don't want to do this anymore. My brain feels like it is underwater. Stringing words together into coherent sentences takes about ten times longer than normal. My head feels like it is in a vice grip, constantly being squeezed. I have flu-like aches worse than any flu imaginable. My hip is on fire and my knee feels like it is being knifed. I feel so stiff all over that I wonder if death got confused and rigor mortis has set in.

I hope with all of my heart that the increase in symptoms and pain means that I am just on the brink of healing. I don't like to write blog posts when I have tears streaming down my face from pain. I don't like writing publicly about the if-I-were-your-dog-you'd-have-me-euthanized kind of days, but the fact is, when you have Lyme disease, you have those kind of days--sometimes more often than you'd like to admit. I've begun the dance that I do best, that all of us do best really--the dance of trying to outrun myself when the going gets tough--anything to avoid facing the pain.

Like a cicada, I want to crawl out of my skin. But, as much as I--as we all--squirm and fight, I know deep down inside of me that it is exactly in these moments of wanting to crawl out of my skin that beautiful things can really begin to bloom. Sometimes you have to learn how to get out of your own way before true healing can begin.

Photo credit for this incredible macro"Fir0002/Flagstaffotos"
Every winter, for as long as I can remember, I would drive down the interstate and get the same gut-wrenching feeling as I looked at the miserable, bare trees whizzing by out the window. They represented all the things that I disliked most about winter--the hard times; the blustery, colorless, cold days with way too little sunlight. A few days ago, though, I was looking at the gloomy, leafless trees when a thought hit me: Those trees--the same ones that gave me a sickening, hopeless feeling year after year--were survivors. Yet, every year, they made it through the long, hard winter--the hard times--and triumphantly burst forth with color to celebrate their survival in the springtime.

I've watched for a few weeks now as my orchid has gotten ready to bloom again for the first time since I bought it earlier this year. Day after day, I've checked it, wondering impatiently if today would be the day that the brand new buds would finally open up. Yesterday, I looked at it and realized that in waiting for it to bloom, I was missing the beauty of the pregnant life in my plant. I was missing the beauty of all the love and care I've given my plant waiting and hoping for it to bloom again. Today, my orchid exploded forth in celebration of survival, rewarding me with the most perfect purple flower.

Writing brings me great healing and, already, in writing this post I've stumbled across an old lesson that I've already relearned and forgotten several times over. In words that I've written once and sadly have absolutely zero memory of writing, "Like a person thrashing to get out of a rip current, my instinct is to run straight back to where I was before I got sick. I want to be the person I used to be, and do the things I used to do again. But I can't. I can't run toward that, because I am on a different journey. Physically, I am weaker than I have ever been in my life. Mentally, I am stronger than I've ever been in my life. So, I'm learning to stop thrashing and step out of the way so my body can do its job." 



"Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.” Thich Nhat Hanh

Thursday, December 1, 2011

Do You Suffer From "What Next" Disease?

 Lyme disease can attack and wreak havoc on any and all systems in your body and the sheer number of symptoms it can cause is staggering. If you don't have the correct diagnosis and new symptoms are popping up left and right, it can be quite terrifying and you may find yourself wondering and waiting for the what next?!

With Lyme disease, it's always something, and chances are, that something is completely and utterly ridiculous. For example:

Me on the telephone to Kathy: Hey, Kathy, I got the weirdest new symptom today! It was the darndest thing. My feet fell off and now I'm starting to grow hooves!
Kathy to me: That happened to me, too--last July! That's why you never see a picture of me on Facebook from the ankles down! Oh, that Lyme disease--what next?!

Kathy to me: Hey, Alyson, I got the weirdest new symptom today! My hair fell out and dandelions grew back in its place!
Me to Kathy: Kathy, that's just weird. We can't be friends any more. Just kidding! Why do you think I always wear a hat? Oh, that Lyme disease--what next?!

All jokes aside, check out this extensive list of symptoms of Lyme disease. The symptoms are broken down to show the different body systems that can be involved with Lyme disease. (So maybe they forgot to include hoof growing and dandelion hair, but other than that, it's pretty accurate.)

Symptoms of Lyme Disease (from the amazing Canadian Lyme Disease Foundation website)

  • The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
  1. Rash at site of bite
  2. Rashes on other parts of your body
  3. Rash basically circular, oval and spreading out (more generalized)
  4. Raised rash, disappearing and recurring
    • Head, Face, Neck
  5. Unexplained hair loss
  6. Headache, mild or severe, Seizures
  7. Pressure in head, white matter lesions in brain (MRI)
  8. Twitching of facial or other muscles
  9. Facial paralysis (Bell's Palsy, Horner's syndrome)
  10. Tingling of nose, (tip of) tongue, cheek or facial flushing
  11. Stiff or painful neck
  12. Jaw pain or stiffness
  13. Dental problems (unexplained)
  14. Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
    • Eyes/Vision
  15. Double or blurry vision
  16. Increased floating spots
  17. Pain in eyes, or swelling around eyes
  18. Oversensitivity to light
  19. Flashing lights/Peripheral waves/phantom images in corner of eyes
    • Ears/Hearing
  20. Decreased hearing in one or both ears, plugged ears
  21. Buzzing in ears
  22. Pain in ears, oversensitivity to sounds
  23. Ringing in one or both ears
    • Digestive and Excretory Systems
  24. Diarrhea
  25. Constipation
  26. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  27. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
    • Musculoskeletal System
  28. Bone pain, joint pain or swelling, carpal tunnel syndrome
  29. Stiffness of joints, back, neck, tennis elbow
  30. Muscle pain or cramps, (Fibromyalgia)
    • Respiratory and Circulatory Systems
  31. Shortness of breath, can't get full/satisfying breath, cough
  32. Chest pain or rib soreness
  33. Night sweats or unexplained chills
  34. Heart palpitations or extra beats
  35. Endocarditis, Heart blockage
    • Neurologic System
  36. Tremors or unexplained shaking
  37. Burning or stabbing sensations in the body
  38. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  39. Pressure in the head
  40. Numbness in body, tingling, pinpricks
  41. Poor balance, dizziness, difficulty walking
  42. Increased motion sickness
  43. Lightheadedness, wooziness
    • Psychological well-being
  44. Mood swings, irritability, bi-polar disorder
  45. Unusual depression
  46. Disorientation (getting or feeling lost)
  47. Feeling as if you are losing your mind
  48. Over-emotional reactions, crying easily
  49. Too much sleep, or insomnia
  50. Difficulty falling or staying asleep
  51. Narcolepsy, sleep apnea
  52. Panic attacks, anxiety
    • Mental Capability
  53. Memory loss (short or long term)
  54. Confusion, difficulty in thinking
  55. Difficulty with concentration or reading
  56. Going to the wrong place
  57. Speech difficulty (slurred or slow)
  58. Stammering speech
  59. Forgetting how to perform simple tasks
    • Reproduction and Sexuality
  60. Loss of sex drive
  61. Sexual dysfunction
  62. Unexplained menstral pain, irregularity
  63. Unexplained breast pain, discharge
  64. Testicular or pelvic pain
    • General Well-being
  65. Phantom smells
  66. Unexplained weight gain, loss
  67. Extreme fatigue
  68. Swollen glands/lymph nodes
  69. Unexplained fevers (high or low grade)
  70. Continual infections (sinus, kidney, eye, etc.)
  71. Symptoms seem to change, come and go
  72. Pain migrates (moves) to different body parts
  73. Early on, experienced a "flu-like" illness, after which you have not since felt well.
  74. Low body temperature
  75. Allergies/Chemical sensitivities
  76. Increased effect from alcohol and possible worse hangover

Tuesday, November 29, 2011

Oops, I Forgot

Last night, I forgot to take my shot out of the fridge. I'm supposed to take it out an hour before it's time for my injections and--despite the not-so-great track record in the ol' memory department--amazingly, this was the first time I've forgotten. Hey, one out of 18 isn't bad!

The problem was that my friend who gives me the shots had just been picked straight up from a 10 hour shift at work, and even though he was being a good sport, no one had to tell me that waiting an hour for a shot to warm up wasn't exactly high on his list of fun ways to spend the evening (not that giving a shot is good fun, either!).

So, we took the shot out and stuck it under the lamp. We tried to speed up time, but that only works on tv. After about 20 minutes, it felt room-temperature-ish, so we decided that was good enough.

Time does strange things when you have to sit still with a giant needle in your butt. I normally don't pay attention to the clock, because no matter how I think about it, there's still a shot in my ass for several minutes! Normally it takes about six to eight minutes because the medicine is very, very thick. However, this time, I noticed that we were almost through an entire episode of The Wonder Years on Netflix. Shit! 

My friend seemed a bit worried and asked me if I was relaxed. Sure, I was as relaxed as could be given the situation, but, truth be told, I wasn't sure what was going to happen to Kevin and Winnie. I mean, after all, he caught her kissing the lifeguard! Oh, yeah--you're talking about the shot that won't end...

Why do you ask, pal? Is my butt turning green and purple? Are rabbits jumping out of my ass? Should I be concerned? Am I dying?! Yes, I must be dying! Oh, NO!

Okay, so you probably figured out that I didn't die. Actually, nothing bad happened at all except for the fact that the medicine apparently had a cold spot and it took 20 minutes to get all of the medicine to come out. When it did finally start coming out, most of it came out in one big blob. It really didn't hurt any more or less than any of the other shots, but I figure it can't be a good thing to have a needle in your butt for so long!

In what was likely no coincidence, I spent most of today Herxing to the moon and back. I laid in bed chanting, "I will never forget to take my shot out of the fridge again; I will never forget to take my shot out of the fridge again; I will never...."

Lesson learned. The hard way.

Monday, November 28, 2011

It Will Dissolve You!

A few nights ago, my husband had a dream that we were at Trader Joe's and I was completely insistent on buying a brand new product called X-treme Lime Treatment. This was the treatment that was going to cure me; I was sure of it!

My husband was trying desperately to convince me not to buy the lime treatment, which--as the name suggested--was meant to dissolve lime in pipes, but all I heard was someone standing in my way of being cured. He explained to me that I was spelling it wrong*, after all, l-i-m-e is not the same as L-Y-M-E.

He begged. He pleaded. But I would not listen! Finally, in a panic, he started shouting at me in the middle of the store, "Don't you understand?! Extreme Lime Treatment will dissolve you! IT WILL DISSOLVE YOU!"


When my husband told me about his dream, we both had a pretty good laugh, especially at that last part, "It will dissolve you!" I thought it was pretty hysterical. Just for the record, my current Lyme treatment is boringly conventional and I have no intentions of downing any pipe cleaners. What about you?





*A very common Lyme symptom is to stumble over words that sound the same but are spelled differently: their, there, they're; lime, Lyme; our, are., breaks, brakes, etc.; quite an embarrassing symptom if you were previously a stickler for good grammar!

Sunday, November 27, 2011

Is it any Wonder?

Is it any wonder that people think Lyme disease is all in our heads? After all, life with Lyme disease means...

riding on a horse one day;


riding in a wheelchair the next.




If that's not confusing enough, this is what I look like when I'm in excruciating pain:
(hint: I'm the one on the right)

On my good days, I don't look sick. On my bad days--unless I'm in a wheelchair--I still don't look sick. So how will the world know how badly a cure is needed for this painful and debilitating disease? That question nags at me day and night. I don't have the answer and I really wish I did.

I am only one person in this big, big world trying to spread awareness for chronic Lyme disease. Sometimes it feels like a lost cause, but I am trying and that's as good as I can do. I am reminded of this beautiful quote by Helen Keller, "I am only one, but I am still one. I cannot do everything, but still, I can do something; and because I cannot do everything, I will not refuse to do something I can do."

Thursday, November 24, 2011

The Ugly Gift

Today, on this day of giving thanks, I can't help but marvel at something that I am grateful for: I am genuinely thankful for my Lyme disease, despite the hell it has put me through. Now you may be wondering how anyone could be thankful for a crippling, painful disease and before you conclude that I have completely fallen off of my rocker, let me explain myself.

Before I had THE BIG CRASH--the moment that I went from functioning to bed bound--I burned through each day going a mile a minute. I was stressed, I was crazed, I felt like crap all the time and my days blurred together meaninglessly. Sure, there were good times; some really good times, even. But, inside, I was miserable. Maybe it was all that unchecked sickness building up in my body, but mostly, it had to do with my lifestyle--with a great big emphasis on a very bad attitude (guilty as charged!).

When you come to that part of your life that everyone must come to at some point--the part where life no longer hands you lemons, but rather, pelts you with them--most of us switch into survival mode. You do what you have to do no matter what it takes to make it through each minute of every hour of every day, never mind trying to make lemonade with those lemons!

When I first got sick, I went into survival mode and guess what I did? I whined, I cried; I was bitter. I took it out on those around me. I looked for every possible way out of my situation that I could possibly come up with, but there was none. The only way out of Lyme disease was through.

One day I realized I wasn't actually running away from Lyme disease; I was running away from myself. Anything to avoid facing my demons--me. That big, fat, bad attitude was staring me right back in the face. We are either our own worst enemy or our own best friend, but the choice is ours.

Not one single part of this journey with Lyme disease has been easy. In fact, it has been the hardest thing I've ever gone through in my life. But it has also been the most life changing thing I've ever been through. Lyme disease forced me to look long and hard at myself and who I truly am. It pushed me out of my comfort zone--and you'd better believe I fought that kicking and screaming--but it caused a beautiful metamorphosis.

Because of Lyme disease, I am thankful not only on Thanksgiving, but on every single day of the year. I am thankful for every moment of my life, even the ugly, painful moments. I have learned and am learning still to live in the moment and enjoy the present--it's all we have! I am thankful for the gifts that were given to me wrapped up in the ugliest packaging ever imaginable--Lyme disease!

I'm not through my journey yet. In fact, I've just begun. But I've got a much, much better attitude and I've learned how to be a better person to myself and now I am ready to actually battle Lyme disease instead of battling myself.
Thanksgiving 2009, a few short months before my big Lyme crash

Saturday, November 19, 2011

All in your Head

One of the hardest parts of having Lyme disease is that every single aspect of my disease is completely naked to the visible eye. It's surreal that there are no outward signs of the pain going on behind the scenes inside my body. If I don't tell someone I am sick, they have no idea. Even my closest friends have difficulty gauging how I'm feeling unless I verbalize it.

One thing that always throws me off is the comment, "You look like you're feeling great today!" While it's a blessing that I don't usually look as badly as I feel, it's incredibly jarring that my physical appearance can be so utterly incongruent with my pain levels.
This is what Lyme disease looks like. You cannot imagine the pain I was in when this photo was taken...

Inside my body on any given day, I'm battling dozens of symptoms that no one can see. Yet, I'm expected to function like a "normal" person, because I still look like a normal person (No comments from my brother here!). When I first came to my Lyme doctor, I had over 60 symptoms--and not a single one visible to anyone else! With treatment, we've whittled that symptom list down to a much smaller number of symptoms, but like I said, there are still dozens.

With so much going on in my body and in my life that no one can see but me, I feel so torn--after all, it's really nobody's business but my own if I'm sick, so why the need for people to know and understand Lyme disease? Simply put, doctor after doctor discredited my Lyme disease as being all in my head because I didn't/don't "look" sick. I don't want others going through the hell that I went through to get diagnosed, but unfortunately that's exactly what is happening all across the country.

The fact that in every single state in the United States, you can drag around a list of over 60 symptoms of an endemic disease and be told over and over that there is nothing wrong with you "because you don't look sick" pushes me to keep telling my story--the story of Lyme disease--until it is heard.

Just out of curiosity--Lyme friends, how many of you were told by doctors that "it's all in your head?"

Article About Lyme Disease

This is one of the best articles I've read about how dangerously misdiagnosed Lyme disease is. According to this article, the average Lyme patient sees seven doctors before getting properly diagnosed, although I'd venture to say that that is an extremely conservative number. By that point, the disease has already spread throughout the entire body, turning it into a profoundly difficult to treat disease, as evidenced in this heart-wrenching story about Billy Wallace.  
The article states that, "Lyme disease cases increased from about 17,700 in 2000 to nearly 30,000 by 2009, according to the CDC."  The CDC has stated on their website that the actual number of cases of Lyme disease may be up to ten times higher. That would mean the number of cases increased from 177,000 in 2000 to nearly 300,000 by 2009. Don't forget that (by a very conservative estimate) only one in seven doctors is able to properly diagnose Lyme disease.
How many more Billy Wallaces will it take to awaken the medical field of this crisis? Because of the lack of knowledge about Lyme disease, Billy Wallace and hundreds of thousands of others, including me, will be fighting this unfathomably disabling disease for the rest of our lives.

Sunday, November 13, 2011

Does Debbie Downer Try To Write Your Blog?

Often, I struggle to find the right words for what I want to say without coming across as writing the most depressing tangle of words imaginable. Lyme disease is not an easy topic to write about without bringing the room down! But, since my biggest hope for my blog is to help others understand what it is like living with chronic Lyme disease, I know I can never achieve that by writing from the perspective of a Debbie Downer, so I try not to let her write my blog posts!


Writing about a difficult subject like Lyme disease is no easy feat. Think of it as being a master chef. For those really tough blog posts that you just can't seem to publish, here's my recipe for success: toss in a gallon of hope, two teaspoons of pain, four heaping cups of gratitude, a sprinkle of tears and two or more cups of laughter to sweeten things up. Add in a few dozen "followers" and cook at 350 degrees until golden brown or until people start "liking" your blog posts.

If you add in too much "pain" and not enough "hope" or "gratitude," your blog post might come out a little too dry and/or burn around the edges. Don't give up; next time just add in a little extra laughter to sweeten it up. Now, let's get cooking and see if this "recipe" works!

(HOPE) On 11-11-11, interestingly enough, I had Bicillin shot number 11, which I took as a sign of good luck! I also began an herbal treatment called the Cowden Support Program for my Lyme disease. Today I am on day three of the six month Cowden Protocol. (LAUGHTER) Three days down, only 187 more to go!

(PAIN) My horse had to have her feet trimmed yesterday and I literally felt like the walking dead. It took every ounce of strength in my body to get to and through that appointment. I was so sick, I didn't even have the energy to hug my beloved horse--who was so excited to see me. In my world, there is no such thing as too exhausted to hug a horse. (HOPE) Yesterday was a tough day, but I know without a doubt that I will beat Lyme disease and one day I will tolt off triumphantly into the sunset with my little pony!

(GRATITUDE) After I got back from the barn, I had a two hour massage (Lyme disease does have a few perks!), which was completely heavenly. It helped pull me out of my funk for a few hours and gave my mind and body temporary shelter from the storm.

(PAIN) I'm pretty sure it's the Bicillin that's kicking my butt. The last few shots have made me feel progressively worse and my Herxing symptoms are piling up. The first three days of the Cowden Protocol are pretty gentle and are intended to help your body detox. Tomorrow--day four of the new protocol--I start five new herbs and also have to have shot number 12 in the evening (LAUGHTER)(er, in the butt, if you'd like to be more technical).

(LAUGHTER) Things are probably going to be pretty intense tomorrow and I told my friend that I am going to wear my Badass Lyme Warrior Woman outfit, complete with convenient Bicillin butt flaps!

Tuesday, November 8, 2011

A Girl and a Horse

I had a very rare afternoon to myself today without my kids, thanks to my mother-in-law, and I was feeling pretty well, so I hopped in the car and went to the barn. It was a gorgeous day out and, as always, my pretty pony was waiting for me.
"Hi, Mama!"










There is no greater joy on this earth than being on top of my horse. I have no pain when I am sitting on her and I believe with all my heart that she understands what a gift she is giving me when I ride her. Mostly, though I don't have enough energy to ride, so we just "park" and I sit on her back and dream about riding while she eats her hay.

When I started Bicillin injections, my doctor told me I'd most likely be too sore to ride my horse. When I told my mom that, she said, "I know you and you'll do it anyway!" What can I say, my mom knows me well. Last week, I went to the barn and tried to climb up on my horse, and ended up hurting myself. I figured it was time to put away my cowgirl boots until I was done with the shots.

But if you know me, you know that I am stubborn. Very stubborn. I took my pony into the arena today and we walked around and around while I contemplated whether or not I should get up on her again. She seemed to say to me, "Just get on already, lady!" So I did. We rode for about 10 minutes--bareback, bridleless, and without reins. And it was amazing.

I'm exhausted after my 10 minutes of being a cowgirl and I'm resting now, but it was worth every bit of the pain that it will cause me for the next several days. Knowing that my dream horse is waiting for me at the barn gives me so much strength to beat the snot out of this disease.


Saturday, November 5, 2011

Erythema Migrans Rash

Last night, as I was peeling off the Tic-Tac-Toe board of band-aids from my butt so that I could apply medicine to my latest Bicillin injection site, I noticed something peculiar on the "good" side (the side currently "on break" from injections). The "good side," in this particular case being the left side, had five circles, each one approximately the size of a quarter.

I figured it was just a reaction to the circle band-aids that I currently had on. Then, I realized that that particular side had only three injection sites, which didn't explain why there were five circles. Also, I could see the three unhealed marks left from each shot, which didn't match up with the circles.

That left me with two other ideas: either a late drug reaction to the Bicillin, or--and this is what I was hoping for--the tell-tale Lyme rash (called an erythema migrans rash or EM for short), which has been known to "magically" appear during antibiotic treatment.

I gave my doctor a call, so that I could let her know what was going on. She had me come in and show her the rash so that she could make sure that it wasn't a reaction to the Bicillin (which is really great because I'm hoping to never, ever have to use the Epi-Pen that I'm supposed to keep handy during shots--you know, just in case).

She said what I was hoping she would: not a reaction to the Bicillin, but in fact, the EM rash--which proves evidence of disseminated borrelia. In non-doctor-speak, what that means is the rash is clear evidence that the Lyme bacteria has spread throughout my body--chronic Lyme disease/late-stage Lyme disease/advanced Lyme disease, whatever name you'd like to call it (I will refrain from using the colorful name my friend came up with for it today).

So, in my excitement, I decided to do a little research about the EM rash appearing long after the actual tick bite and here's what I found:
-Erythema migrans itself may appear at a site far from the original bite as untreated Lyme disease bacterial infection spreads through the skin. 
-Multiple painless EM rashes may occur, indicating disseminated infection.
-A little recognized fact about the EM rash is that it can recur, usually in the original site, with or without antibiotic therapy. We estimate that between 5-10% of patients demonstrate this phenomenon during their illness. Other patients remark that they have migratory rashes of moderate duration from time to time that remain unexplained.

There are a lot of misconceptions about the Lyme disease rash. Here is a great site with lots of pictures of different Lyme rashes.

I can't believe I am publishing this, but I have been begged to, so enjoy!

Multiple EM rashes around Bicillin injection sites

Thursday, November 3, 2011

Time for Change

Imagine finding out you have a rare form of cancer. Now imagine finding out that if your doctor would have diagnosed it years before when you first got sick, you would be cured. Imagine knowing that now you may never get better.

Imagine finding out your insurance won't cover your cancer because they don't know how long you'll need treatment since--because your doctor didn't diagnose you in time--the cancer has spread throughout your entire body. Imagine that you now have to sell not only your beloved business, but also your house to pay for treatments. Imagine as an adult having to move back in with family since you have now found yourself homeless.

When you replace the word "cancer" with "chronic Lyme disease," suddenly people aren't listening anymore. I wish it wasn't, but the story above is a true story and it's happening to a wonderful friend of mine. I wish I could say that hers is a rare story, but the reality is that a huge percentage of people with Lyme lose their homes, their jobs and are forced to file for bankruptcy to pay for treatment--which is very rarely covered by insurance companies.

My friend confided that she not only has to sign up for food stamps, but she has to sign up her daughter for the Angel Tree because she can't pay for Christmas presents this year. What kills me is if this was a story about cancer, it would spread across the internet so fast, her little girl would have a pony in the front yard of their new house for Christmas this year. People would help.

Can you imagine, really imagine being in my friend's shoes? There will be no change until our stories are not only told, but truly heard. The medical system has failed chronic Lyme disease, but we are not giving up. It is time to join our voices and demand a change.

Wednesday, November 2, 2011

Right Around the Bend

In stark contrast to the pain radiating through the area, I have six festive, colorful band-aids decorating my butt. Tonight, I will have seven. Why? Because three days a week, my friend comes over and gives me an injection--the needle, easily the size of a Buick--of Bicillin into my heiney. I am tempted to post a picture of my decked-out rear, but I will spare you. (Sorry, Kathy T.)

The shots last about six minutes; sometimes longer. The Bicillin is very, very thick and the slower the injection, the less painful they are (or so the theory goes). The reason my butt is still covered in band-aids is to mark the site of each injection. Even when the spots don't feel painful anymore, it takes several weeks for the tissue to heal. Accidentally going into the same spot is something I've been warned extensively about.

I am constantly replacing the band-aids as they fall off. Like a trail of bread crumbs, there's a trail of fallen-off band-aids behind me--giving away the identity of a woman who is not supposed to eat sugar, holed up in a dark corner clutching a bag of her children's Halloween candy.

My energy levels have been quite deceptive since starting the Bicillin and I've gotten myself into trouble on more than a few occasions. I've been trying to stick close to home and only go out for short trips. I have been hovering in some kind of strange in-between world. Not quite bad enough to be housebound, but not quite well enough to classify myself as an active member of the human race again.

My mind flashes on an image that is very dear to me: The sight of an old friend--who has since drifted out of my life--bursting triumphantly out of the woods near the finish line of a long and painful marathon. I ran the last leg of the journey with him to the finish line, something that he said touched him very deeply, and my way of saying that I was more than impressed with his tenacious spirit.

Like my dearly missed friend, I feel that I, too, am almost out of the woods.

Saturday, October 29, 2011

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

Wednesday, October 26, 2011

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.

Sunday, October 23, 2011

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?

Thursday, October 20, 2011

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

Wednesday, October 19, 2011

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.

Sunday, October 16, 2011

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.

Saturday, October 15, 2011

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.

Thursday, October 13, 2011

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

Monday, October 10, 2011

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.

Saturday, October 8, 2011

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.



Thursday, October 6, 2011

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....

Wednesday, October 5, 2011

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!