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

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.

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

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

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.

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!

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."

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

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.

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!

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.

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

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.

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.