Saturday, December 31, 2011


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


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!

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