Bingo!

Wondering if you might have Lyme disease? Well, wonder no longer! Just take a look at our handy new Medical Specialist Bingo Board below:














How many of these specialists have you visited in the last six months? If you've got three in a row or four corners, congratulations: you win a free visit to read the symptoms of Lyme disease!

Can you fill out your whole Medical Specialist Bingo board*? Well, congratulations! You might just be the newest member of the Lyme Disease Club! Pat yourself on the back and send your blood off to be tested! Bingo!

* Gentlemen, you get a "free space" on the "gynecologist" square.



It has been estimated that only 50% of people with Lyme disease ever recall a tick bite. Left untreated, Lyme disease can attack any and every organ in the body. When multiple body systems are being affected, Lyme disease needs be properly ruled out by a doctor well-educated in Lyme disease. A huge number of Lyme disease patients will be bounced around from specialist to specialist before they are ever tested for Lyme disease. Know the facts.

June Update

I'm finally getting around to posting an update. I apologize for the lapse in posting; I've been a really bad blogger lately! I will make up for it with lots of pictures. My health has been extremely up and down, but thankfully I haven't had any more seizures since my last post. I am, however, sporting a lovely 30 day heart monitor in case I have any more of the heart episodes I've had recently. I'm on day 20 with no events yet.

A few weeks ago, I went on an overnight hiking trip. This was my very first backpacking trip since becoming debilitated from Lyme disease in 2009. After being bedridden for months on end and enduring nearly two years of agonizing treatments--including seven months of painful injections--I'm over the moon that I finally accomplished my goal of going on a hiking trip!

This trip was very difficult for me and it really did a number on my body, but I was (and am) enormously proud of my accomplishment and it was worth every bit of the pain that it caused my body. Though I really haven't been feeling very well the past few weeks, I somehow managed the two mile hike in (luckily we found a service road and were able to drive our Subaru in, so I didn't have to hike out very far), and this trip felt like my triumph over Lyme disease. That is, until I noticed something in my hair on the car ride home...

I was the only one who hiked in wearing long sleeves, jeans and tall hiking boots; the other three people had on shorts, short sleeves and sneakers. I was the one warning my friends, "Don't lean against that tree--that's one of the easiest ways to pick up a tick!" I was careful, and out of four people on this trip, I was the only one who came home with a tick bite. To say I was heartbroken would be an understatement.

Please be very careful, friends! Check yourself for ticks thoroughly and often. Even being very careful, I still ended up with a tick bite. This is supposed to be the worst year ever for Lyme disease. I was lucky; because I am currently on multiple antibiotics, my doctor feels I am protected against any tick borne diseases that my little hitchhiker may have been carrying. So if anyone had to come home with a tick bite, I guess it was good that it was me! (As a side note, my tick was donated to science; she was sent off to an entomologist in my state.)

Lyme disease has taken such a huge part of my life away from me. I will NOT let Lyme disease steal my love for the outdoors away from me, too. I know too many people with Lyme who will not go in the woods any more.

I can never be one of those people, because nature is my biggest inspiration for getting better!

As I said, my health has been very up and down; my body is still adjusting to a different treatment protocol (I'm done with the painful Bicillin injections!). I have had many huge Lyme crashes where I can't do anything until it passes. I had one day where I couldn't move for three hours; a few hours later I felt great and went off riding my horse!

It's really hard for people to understand the up and down nature of this disease. There's absolutely no rhyme or reason to it. Sometimes I'm up; sometimes I'm down. Sometimes I'm in a lot of pain; sometimes I feel great. I wish I could explain it, but I can't.

I have really learned to cherish the good moments and play with my children, dash to the barn to see my horse, play my drums, go in the woods, etc. And I have learned to pamper myself in my bad moments--I get weekly massages, indulge in my favorite comfort foods, take epsom salt and aromatherapy baths, etc.

Sometimes, you just have to make the best of a bad situation...

PS, I meant humor, not alcohol! But, hey, this puppy looks pretty content...

Seizures

"Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen." -Winston Churchill

This is an extremely difficult post for me to write, and for some people it may be equally hard to read. I knew I needed to write this post for myself, but I really wrestled with the decision on whether to publish it or to keep it private.

The main reason I keep this blog is to help my family and friends understand my disease, and--because the vast majority of my illness goes on behind closed doors--even some of my closest friends have never seen the wrath of this disease on my body. If I don't feel well, I stay home. Since May is Lyme disease awareness month, I've decided to publish it.

A few weeks ago, my heart started pounding. No big deal, I thought, as I took some deep breaths. Then my throat started going numb. Suddenly, my insides felt like they were on fire, and I felt heat spreading slowly throughout my body like a wave. I felt dizzy and nauseated and thought I was going to pass out. My heart galloped like I've never felt before for around 20 minutes.

I was fully conscious, but I felt completely out of it and trying to form words was incredibly difficult. Next my body started shaking and my muscles started jerking and convulsing. I was so scared and all I could think was that I was having a seizure. After the episode was over, I was left with a dizzy/lop-sided feeling and absolutely no energy for ten hours. I could only get up to go to the bathroom.

I got in touch with my doctor and she felt that my autonomic nervous system was going haywire from too much die-off. (As the Lyme bacteria are killed, they release a toxin into your body faster than your body can process it, causing a huge increase in Lyme symptoms and making you feel temporarily like hell; this is called a Herx reaction, and it is a "good" thing because it means the bacteria is dying.)

The next few days were rough. My anxiety came back. I started having panic attacks. My joint pain came back. My memory started slipping again, and I started going downhill really fast. I stopped my new medicine and I went back to two shots a week instead of just one (we were in the process of weaning from three Bicillin injections a week down to one a week).

Then, last week, I had another episode--this one even worse. First, I started experiencing visual disturbances, similar to those I get from migraines. I was seeing spots and my eyes would not focus. Suddenly, I felt like passing out. I laid down and noticed that my left arm felt completely wet. I touched it and it was, of course, not wet. Next it felt like someone was putting Icy Hot all over my arms and legs.

Then I started shaking and my muscles started jerking and convulsing to varying degrees, which lasted for a hellish 45 minutes. At one point my left arm clawed up and started flailing. At the same time, I felt what I can only describe as a bubble in my right ear moving slowly across to the right side of my brain.

The whole time, I felt a bizarre zen-like calmness, which was completely unnerving, since my body was freaking out and should have been coursing with adrenaline. I will take calm over panic any day, but it was alarming.

We now think both episodes were likely seizures. Seizures are actually a fairly common symptom of  Lyme disease. My doctor wants me to wear a heart monitor for 30 days and to have an EEG to test for seizures. There have been other times during my treatment that I suspected I may have been having seizures, most notably during treatment of my co-infection, Babesia. This is a video of what I looked like during the episode (please note, this is NOT ME in the video).

The experience was deeply traumatizing. Losing control over your body is absolutely terrifying. It's hard for me not to dwell on the fact that it may happen again, especially when going out in public. Going from over 90% better last month to having seizures this month is heartbreaking.

But I don't want to live a half-life where I dwell on what ifs. I'm trying hard to reach out and grab life by the horns and not let it pass me by, because when you have a chronic illness, it's so easy to just let life slip through your fingers. I'm just taking it a day at a time.

It's been ten days since the last seizure and I haven't had another one. I finished my last Bicillin shot last week, took a week off of treatment and started my next protocol yesterday. I'm back to oral antibiotics, although in all honestly, really I'd rather have a shot three times a week than pop so many pills everyday. But those pills are what keep me functioning, so reminding myself of that makes it a little easier to swallow them down.

The most difficult part of this disease is knowing that it could have been prevented. When caught and treated right away, Lyme disease can be cured; untreated for too long and you can end up fighting for your life. When I think back on the decades of countless doctors I saw over the years since my first tick bite as a child, not a single one of them was able to recognize Lyme disease, causing a treatable disease to turn into what could likely be a life-long battle. 

What I want more than anything is to see a change that starts with education. Recognizing the early symptoms of Lyme disease is crucial in keeping the disease in its treatable stage. Please take a moment to read this article about the top ten tips to prevent chronic Lyme disease. 

Just A Passing Phase

Whenever my Lyme disease doctor utters the words, "It's time to change your treatment protocol," it's translated in my brain as, "The shit's about to hit the fan!" I have been in treatment long enough that I have come to recognize a distinct pattern in my behavior when it's time to make the switch to a new treatment.

The first thing that happens to me is that I go into a strange mourning period, known as The Morticia Addams Phase of my treatment. This is the time to find me dressed in head-to-toe black clothing, banishing all smiling from the entire household, and sunk into a miserable, deep depression (usually involving particularly large quantities of ice cream.)

I always need to take a few days to grieve when I have to begin a new treatment protocol. Letting go of what is working for my body and accepting that things are going to be unpleasant for a while is a very difficult thing to face. It means the end of whatever particular form of torture--whoops, I mean treatment--was bringing me relief from the myriad symptoms of Lyme disease.

After my mourning period is over, I morph into The Alice Brady Phase of my treatment. With a sudden burst of energy from out of nowhere that can be likened to a heavily pregnant woman overcome by intense nesting urges, I suddenly fly into a cleaning frenzy as I start prepping my household for the Great Lyme-quake that's about to hit the house once I pop those new pills into my mouth.

If you were to get up for a midnight snack, you might bump into me organizing the Tupperware cabinet, frantically chasing dust bunnies, or lining up bags of unwanted items in the attic for Goodwill. With the threat of me being down for the count for an unknown period of time, this is likely the last time the house will see a sponge or a broom for a very long time.

The burst of energy is usually short-lived. Enter The Cowardly Lion Phase of my treatment. This is the part where I forget all about my strength and bravery and all of the hardships I've successfully overcome since my battle with Lyme disease began. The what-ifs come raining down on my head and knock me out with fear. How sick will I have to get before I start feeling better? How am I going to get through this? What if I can't handle the pain? What if a dodo bird walks down our street and I'm too exhausted to grab my camera and take the photo that would have turned me into a millionaire?

Like a death sentence, The Cowardly Lion Phase of treatment usually has me counting down the hours, minutes and seconds until it's time to begin the new treatment protocol. I'd like to say that at the last minute, I discover my courage and face those new pills like a true champ. Sorry, but no. However, sometime after I'm knee-deep in a nasty Herx, I enter into the final phase of treatment.

(Drum roll please......)

Last, but not least, the hardest, yet most rewarding part of treatment: The Santa Claus Phase of treatment. With the beginning of a new treatment comes the most severe pain involved in battling this debilitating disease, and in these moments I am profoundly affected by the help and generosity of others. Like Santa Claus, I find myself wanting to share the joy with others. This is the part of treatment where life is often covered in a beautiful, soft blanket of snow. With The Santa Claus Phase of treatment comes the hope of a cure and the magical beauty that is this crazy, painful, messy beautiful thing called life.

Detour

As it turns out, my body rejected the new treatment protocol for waging war upon my chronic Lyme disease. It was way too much, way too fast and now I'm backsliding rapidly. I've been working to get back on my feet and to remain positive while swatting away echoes of the "R" word bouncing about in my head:
 relapse, relapse, relapse, relapse, relapse.

Because everyone has a unique immune system, coupled with the fact that many people with Lyme disease are also suffering from various other tick-borne illnesses, what works treatment-wise for one person with this disease often does not work for another. It is very difficult to find the right balance between a strong enough dose to kill the Lyme bacteria, but not so strong that you feel like you're being killed along with it! There is a lot of trial and error involved in finding the right medicines at the right dose.

My joint pain is back with a vengeance; my short-term memory is checking out on me again and I'm getting that spacey, lost, out-of-it feeling again. My energy supplies dwindle rapidly and unexpectedly during the day; I'm wide awake at night. And worst of all, I'm having panic attacks again. The ferocity with which Lyme disease can quickly overpower you when you think you've got a grip on it is staggering. Most people have no idea what a serious disease chronic Lyme disease is!

Despite the major setback, I'm really not as upset as I feel like I should be. Yes, I'm frustrated. Yes, I wish I was better. But honestly, I've been battling this for so long, I've gotten used to taking a lot of detours. And detours only last so long before you get back onto the main road again.

"I may not be there yet, but I'm closer than I was yesterday."  ~Author Unknown

The Very Things That Held You Down

When I was at my sickest with Lyme disease, I was angry and depressed. I was frustrated with being in pain every day. I hated not knowing if I was going to get better or not. I was miserable and grieving my old life--I wanted my freedom back from being sick!

During that rough time of my life, one of my best friends--knowing how much I love quotes--gave me a little plaque with this quote by Dumbo on it: "The very things that held you down are going to carry you up." Though I've never been a fan of animated Disney movies, it was a very thoughtful gift, and there's not a doubt in my mind that my friend knew what she was doing when she gave me that particular quote!

But to be honest, it hit too close to home for me. It made me squirm. It meant finding peace in the midst of chaos; it meant not only accepting my illness, but also learning from it and growing from it. Even though it made me uncomfortable, I displayed that little quote right above my bathroom sink where I would see it several times a day. And every single day--whether sick or well, happy or sad--I read and reread that quote, "The very things that held you down are going to carry you up."

I looked at that quote tonight while brushing my teeth, and thought about how that one little sentence has guided me over my journey with Lyme disease. Last night I reread an old blog post that I wrote called The Courage to be Sick. I wrote that a week after one of the most traumatic experiences of my life, and though I didn't see it at the time, that post could not have been a more perfect example of how the very thing that was holding me down was already carrying me up.

My little plaque is completely beat up, withered and fading, but still standing. Just like me.

Total Extinction

It's time for me to begin weaning myself off of my three times a week Bicillin injections for treatment of my chronic Lyme disease. Now, you would think that this would be the kind of change I'd be jumping for joy at. I mean, seriously, who wouldn't want to ditch several-minutes-long, pain-in-the-butt (literally and figuratively!) shots three times a week?! Me, apparently! Change means facing the unknown, and for me the unknown means changing a treatment that is working really, really well.

Monday was my 72nd shot--the six month marker for me. I had been working toward that goal, well, for six months, obviously. My friend and I joked that I would reach "total extinction" (remission) at the six month point. While I wasn't magically healed by the 72nd shot, I cannot deny that these shots have brought me farther than any other treatment I've done.

Alas, I am not in remission, and that means--like it or not--it is time for me to soldier on with the next part of my treatment. Last night was my first (planned) night skipping a shot and I was terrified of how my body would respond to this change. I worried myself into a panic yesterday.

Sometimes, you have to learn a lesson over and over before it sinks in: When you dwell on fear, it grows and grows. I realized last night that I was unconsciously choosing to make the fear of the unknown a thousand times worse than facing the actual experience, and that was the last thing I wanted to do.

I decided today I needed a change in attitude, and I must say, when you go looking for motivation instead of dwelling on fear, motivation has a way of making you look like quite the fool! I took myself out to lunch alone today--a very rare occasion for me, since I'm the mother of two young kids--and I noticed that the man sitting at the table next to me was sporting a neck brace, an eye patch and a cast on his arm.

Poor guy, I thought to myself. But then I realized that I was the miserable one feeling sorry for myself, despite the fact that I was still feeling pretty decent considering the skipped shot. This man was smiling, laughing and having a wonderful lunch with a friend. If I didn't think it would break him, I probably would have gotten up and hugged him!
 
Well, what can I say? I learn my lessons the hard way! Don't most of us, though? Anyway, enough feeling sorry for myself; enough moping about having to be sick for a while again (So we meet again, Flagyl!). Enough! It's time to move forward.

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” Helen Keller

March On

I haven't been writing much because I've been feeling really well. Today I had an appointment with my Lyme doctor and I was so excited for this appointment because I couldn't wait to share my joy with her in letting her know how well I've been doing.

Currently, we have been treating my Lyme disease with Bicillin intramuscular injections three times a week. I am a few shots shy of six months. My new treatment plan is to cut the shots back to one a week, and on shot days and the following day, I will take an oral antibiotic--a cyst buster known as Flagyl.

When the Lyme spirochetes are attacked with antibiotics,one of the ways they will try to evade this attack is by turning into a cyst form. They either come out of this cyst form when they think the coast is clear, or they are forced out by cyst busting antibiotics. Cyst busting drugs are essential for Lyme disease treatment, but brutal, because they are notorious for causing very strong Herx reactions. Flagyl is definitely on the list of least favorite antibiotics among Lyme disease sufferers.

Some people may be wondering why I should continue with the shots if I'm doing so well. The reason for this is because after my shots, I have been experiencing a strong Herx reaction. I get incredibly exhausted and have very severe flu-like aches for a few hours. While it's unpleasant, this Herx reaction means that the shots are still working.

Starting a new treatment regimen is always daunting. I've gotten used to being back in the saddle again, literally and figuratively, and it's hard to think about trading that in for feeling lousy again for a while. Remember, with Lyme treatment, you have to get worse before you get better. If you don't, it means the Lyme bacteria is not dying off.

My doctor mentioned that cutting back my shots could cause me to relapse, in which case I am to go back to three shots a week (without the Flagyl). It's hard to change what is working so well, but I'm not all the way out of the woods yet, and so I bravely march on to the next part of my treatment!

Doing a three mile hike on St. Paddy's Day!

Falling into Place

I had a really rough day yesterday, but I'm happy to say that that was way out of the norm for me lately. I've been continuing to make progress against my chronic Lyme disease by leaps and bounds. Last week, as I laid down to rest, I found myself abruptly flooded with numerous things that I had been struggling to remember. It was like a huge wad of cotton was suddenly pulled out of my brain and I could remember everything again! No more Alzheimer's brain! No more plastering myself with post-it notes to remember important things!

Over the past few years, as I've been sick, I've struggled with loss: loss of energy, loss of the ability to take care of my children and myself and loss of the ability to do many of the things I love to do. But lately, I've been adjusting to a new theme: more. I've had more energy, I have been riding my horse more, keeping up with the housework more, cooking more and being a more active mother (yeah!!!). I have fought so hard for this! I feel like the pieces of my life are finally falling back into place again.

On Monday, I had my 60th Bicillin injection. When I first started my shots, I set a personal limit of 72 shots, or six months, and I can't believe how close I am to achieving that goal. I have worked so, so hard to gain my health back, and it's amazing to see the payback.

I still have a long road to recovery ahead of me. I have a lot of pain on a daily basis and a lot of symptoms left. But I am over the moon at how far these pain-in-the-butt shots (ha!) have brought me toward recovering from chronic Lyme disease.

Feeling Good

I am now officially one month sugar free! Valentine's Day was brutal, and sadly now that V-day is over, going into the grocery store is not any easier due to the fact that all of the chocolate morphed straight from heart-shaped delights to smiling Easter-bunny-shaped temptations. Mmmm...chocolate! Time to change the subject, pronto!

I've been slacking pretty badly at keeping up with my blog lately, but for once, it's for a good reason: I've been doing significantly better! My energy level has gone way up and my pain levels have gone way down. My memory is slightly better--I've been starting to remember major and minor details--things that matter so much to me--without having to draw pictures on my hand!

Muddy Buddies! Fjóla and me on a muddy day.

For the first time in over ten years, I've been able to get off of my asthma medicine. I've been off for a few months now and have not had a single asthma attack. Most people--including doctors--do not connect asthma with Lyme disease, but I developed asthma (along with several other health problems) shortly after my health went rapidly and "mysteriously" downhill following a tick bite in 2001. Lyme disease can wreak havoc on any and all systems in the body!

One of the most exciting changes in my health that I've started noticing quite recently--which now that I've put that into writing, I've realized probably isn't exciting to anyone but me--is that I have started getting hot at the appropriate times. That might seem like a strange thing to be excited about, but the daily Lyme chills that I've suffered from for years make it impossible under any circumstances to get warm, even in the summertime. I've been known on many occasions to zip myself into a 0-degree Mummy Sleeping Bag, plus multiple comforters, not to mention coat, hat, mittens, etc. in the middle of a heat wave and still be chilled to the bone!

I remember someone telling me that one of the first things the Lyme bacteria does is attack your thyroid so you can't regulate your body temperature. The bacteria thrive in the cold and so most people with Lyme disease have low body temperatures. Normal for me is around 96.2! For me to feel hot at appropriate times again makes me think that my body is starting to win back control again!

While I am doing much better, I still have many Lyme symptoms left. Though my joint pain has been relatively mild lately, I still suffer from daily flu-like body aches, at times very severe. I tend to run completely out of energy quite abruptly, so I have to pace myself very carefully if I'm not at home, and sometimes I will use a wheelchair still for that reason.

My current Lyme disease treatment consists of Bicillin intramuscular injections three times weekly (read: shots to the butt on Mondays, Wednesdays and Fridays). My doctor wanted me to do six to eight months of Bicillin and I am currently only 19 shots away from my own personal limit of six months of this pain-in-the-butt-treatment!

I am currently researching rife machine treatments for Lyme disease and have been reading Lyme Disease and Rife Machines by Bryan Rosner. I can't say enough good things about the book so far and I really think this is the route I want to pursue. I am getting tired now and will have to save explaining what rife machines are to those who've never heard of them for another post. Which reminds me of one last thing--I've been getting tired at a normal hour again for the first time in a few years. I think my body is really starting to win this battle!

I would love feedback from any Lyme friends who have had experience with rifing!

Aly Dumpty Sat on a Wall

Exactly two years ago, Aly Dumpty sat on a wall and Aly Dumpty had a great fall. For two years now, all of the king's horses and all of the king's men have been trying to put Aly Dumpty together again. Two years ago, Aly Dumpty fell off of an invisible wall and her life shattered into pieces all around her. The last weekend of January, 2010, was when I--Aly Dumpty--went from functioning with undiagnosed Lyme disease, to becoming disabled by undiagnosed Lyme disease.

Humpty Dumpty was unable to be put back together. However, I, Aly Dumpty, refuse to accept the same fate for myself. For two years now, I have been instructing all the king's horses and all the king's men exactly which pieces go where. It's not an easy task putting me back together, but I reject the idea that it cannot be done. All the king's horses and all the king's men gave up on Humpty Dumpty. But they will not give up on me. Neither will I give up on me, even when it sometimes looks like some of the pieces may be missing or put on upside down and backward!

Aly Dumpty sat on a wall,
Aly Dumpty had a great fall;
And all the king's horses,
And all the king's men
Worked very hard and put
Aly Dumpty together again!

Cookie Monster

Cookie Monster

I remember quite perfectly standing in our kitchen on my third birthday--frozen in awe, stunned in silence by the most incredible thing my young eyes had ever laid sight on. My mother and my aunt had baked me the most beautiful birthday cake that has ever been baked in the entire history of cakes.

My baby-blue eyes (not to mention my stomach!) had never before feasted on anything more lovely...and this sugary delight--a bright blue homemade cake in the shape of my beloved hero, Cookie Monster, was all mine (okay, well, technically I was supposed to share it)! Funny how my childhood idol was a cute fuzzy monster who loved to devour sugar as much as me...

Flash forward 28 years. Hello, my name is Alyson and I am terribly, horribly, powerfully addicted to sugar. The longest I've ever made it without sugar is around one month. Sugar plus Lyme disease is very bad. But the fact of the matter is, I am very, very addicted and simply knowing that I shouldn't eat it doesn't actually give me the tools I need to wrestle this mighty beast.

The Lyme bacteria feed off of sugar. They crave it; I crave it. I feel powerless to this mighty force inside of me screaming for its fix. Sugar, sugar, sugar! I'm on my ninth day without sugar, but for some reason, my cravings are getting stronger, not less as the days go by. I can't figure out why, but this time around has been more difficult than any other time I've tried to quit. Maybe this time, the Lyme bacteria have realized that I mean business and they're extra worried!

The thought of never having sugar again is too overwhelming for me to process. I am too addicted to just have a little bit; once I have a taste, I'm back to my old habits. So for me, it's all or nothing. I'm trying to take it a day at a time and not think about the Giant Unmentionable Holiday coming up that is devoted to all things sweet and lovely. One day at a time...

Adios, Cowden Protocol

Last weekend, I called my doctor and talked to her about quitting my six month long herbal protocol for chronic Lyme disease. She agreed that it was just too much for me, so, as of last Sunday, I am no longer doing the Cowden Condensed Protocol. While it feels lousy to quit, I did make it through 60 days, and I'm very proud of that, because those 60 days were not easy (there's the understatement of the year!). Together with my three-times-weekly Bicillin shots, I was just way too sick.

To someone who doesn't understand Lyme disease treatment, it's easy to assume that those of us with Lyme disease are sick because we are taking too many medicines. I've written several posts about the healing crisis that takes place during Lyme disease treatment--the reason you have to get worse to get better--and I'd like to point you here if you'd like to read more about the healing crisis, or herxheimer reaction. There's a lot of trial and error involved in treating chronic Lyme disease as everyone has a different immune system and different co-infections and viral activity along with Lyme.

Since I've been off the Cowden Protocol, I've been doing slightly better. My head feels clearer, although that is a very difficult thing to explain in writing. I still tire very easily and need to rest often, but I think (fingers crossed here!) that my energy may be slowly coming back. I've been working extra hard on detoxing my body, as most people with Lyme need extra help in this department. I've been chugging lemon water, soaking in epsom salt baths, and rebounding on my trampoline. (Not all at the same time, of course!)

Yawn! Lymeland is kind of boring right now!

Things have been a little slow here in Lymeland, but I've been plugging along. I've had some lovely visits with my horse and I've been pouring my heart out to my guitar. As hard as it was to make the decision to quit the Cowden Protocol, I'm proud of myself for listening to my body, and if need be, I will pursue the program again when I can concentrate on it as my only treatment.

Laugh Your Heart Out

"Laugh your heart out, dance in the rain, cherish the moment, ignore the pain. Live, laugh, love, forgive and forget; life's too short to be living with regrets."

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!