Monday, February 28, 2011

You're No Good, You're No Good, Sugar, You're No Good!

Not too long ago, I wrote a post about my little sugar problem (and by little, I mean not even close to being little). Well, well, well-guess what? That no-good sugar, like a bad boyfriend, is back in my life yet again and I'm right back to square one: trying, and failing miserably to kick him, er, it to the curb. Again.

This time, my downward spiral back into Sugarland started when my husband came down with the flu, bumping sickly me into primary caregiver for said-sick-husband, two extremely cooped-up/hyper kids, and me (despite the fact that the flu knew I was right smack dab in the middle of a Herx from a new medicine).

With my husband sick, that left me, me!, in charge of cooking for everyone and not burning down the house. We survived, the house survived, but my diet didn't. I made it through those long days with the help of my friend sugar. Really, there's no need to mention the cookies, tiramisu, Ben & Jerry's Cookie Dough Ice Cream, donuts, soda...Oh lordy, that's in writing now, isn't it?!

Today was going to be the day that I would finally muster up the courage to break it off with my on again/off again flame, Sugar. Except, right as I reached for the phone (er, closed the freezer empty-handed), Sugar sent me a text and said he was sorry. He sounded so damn sincere that I told him maybe, just maybe it'd be okay if he stopped over- but ONLY FOR A FEW MINUTES. So he did. And he still hasn't left!

Thank goodness I've got a date lined up soon with a new man, Will Power. Now, where did I leave his number? Maybe it's in the freezer. Next to that pint of Ben & Jerry's. Let me just check...

Will Power? If you're out there, I lost your number! Call me!

Sunday, February 27, 2011

One Year Ago

Today marks the one year anniversary of The Big Lyme Crash-the moment I went from sick to siiiiiiick. I had been feeling progressively worse over the weeks and was being plagued with scary symptoms like chest pains, shortness of breath, blurry vision, headaches, etc.

On that day a year ago, there was no mistaking that something was very, very wrong and my husband and I agreed that I should go to the emergency room. In the hospital, they ran tests for "all the big, bad scary stuff," and when everything came back normal, they said to make an appointment with my regular doctor to have a mono test done.

I was sent home with 12 less vials of blood, continuing chest pains, blurry vision, exhaustion beyond belief and anxiety through the roof. I felt so scared and helpless being discharged from the hospital when I knew in my heart that something was terribly wrong. I did not receive my diagnosis of Lyme disease, however, for nearly half a year.

I've lost so much this year, but I've gained so much more. I'm stronger, more content, more positive. I'm more thankful and more joyful. I take pleasure in things that I used to take for granted. I've made some incredibly deep friendships this year that I will cherish forever. Thank you to my dear friends and family who've held me up throughout this difficult year! I couldn't have made it through this difficult year without your love and support.

Saturday, February 26, 2011

Puppet Legs

Hands down, Lyme disease recovery is the hardest thing I've ever gone through. It is a private struggle; people with Lyme disease are usually too sick to go out much. When I do venture out, it's because I'm feeling "good," which means people who see me get a very distorted picture of what it's actually like to have Lyme disease.

In fact, most of my closest friends and family have not even been exposed to the ugly side of my disease. They get to see the "good days," and although they may hear me talk about being sick, most people have no idea what Lyme disease is really like.

The things that happen to your body when the Lyme bacteria are dying off are very scary. This is the absolute worst part of Lyme disease and the side that most are spared from seeing. This is when those of us with Lyme appear to have dropped off the face of the earth because we are very, very sick.

My blog is my way of letting the world know I haven't disappeared. So, now I'd like to open the curtains and give you a peek at what it's like behind the scenes-I'm going to share one of my recent Herxing experiences. I was feeling fine a few days ago when suddenly, out of nowhere, my legs gave out on me. One minute I was fine and the next I was very much not fine. My anxiety, which has been relatively quiet lately, kicked into high gear and I was hit with a burst of nervous energy and I couldn't sit still. So I was left pacing anxiously around the house with legs jiggling and bobbing like a marionette puppet.

I was hunched over like a little old lady and for whatever reason, physically unable to stand up straight. My body was twitching and jerking all over. I didn't have any help for the day and so I was home alone with my two kids. I called up a friend on the phone, a fellow Lyme sufferer, and she talked me through the worst of it and calmed me down. She forced me to sit still and let my body rest. She knew to distract me from the anxiety and fear that comes with being trapped in an uncooperative body where anything goes.

The episode lasted for about 45 minutes. My legs eventually stopped wiggling, waggling, and wobbling, but I was left with a fatigue so debilitating, a word doesn't even exist with which to describe it. By this time, one of my close friends had come over to help me and carried up the steps so I could rest in my bed. It is incredibly humbling to be so weak you have to be carried. But on the other hand, it is amazing to have people in my life that care about me enough to literally and figuratively carry me through this.

Lyme disease takes you to the darkest places you can ever imagine. You are literally at the mercy of your body. I've had times when I've been too weak to walk to the bathroom and have had to be carried. I've had times when I've been too weak to even talk.

As scary as they are, those are the times that make me reflect on my Lyme journey the most. My heart floods with gratitude for the amazing people that have helped me get where I am today, and I truly wouldn't have made it this far without the help of some pretty incredible people. I try to remember how hard my body is working to get me healthy again. My heart is full of love for my incredible doctor who risks her job to help people like me get better.

Today, two days later, I'm still feeling the effects from my puppet legs incident. My leg muscles feel like I asked them to run a marathon. My neck and back are so knotted up and painful that I wonder if perhaps I was actually in a car wreck and forgot!

I really don't like writing posts like this, but I want so badly for people to know what it's like living with Lyme disease. The easy thing to do is to close your eyes and let me, and others with Lyme disease, drop off the face of the earth. Most of us with Lyme disease are fighting not only for our health, but for acceptance, understanding, and validation of our disease. I love to hear from my readers, so please leave me a comment!

Tuesday, February 22, 2011

What Goes Up Must Come Down

***Life lessons learned from having Lyme disease***

What goes up must come down. You'll be up; you'll be down. You'll be down; you'll be up. Actually, you'll be like that game Whack-A-Mole. You'll pop up quickly, only to be smashed back down with a mallet to the head. But you'll keep popping up.

When the primary house cleaner is down with Lyme disease, never, ever, ever look in the microwave! Also, if you are a grandmother visiting a family member with Lyme disease, don't peer into their fridge-you may go into cardiac arrest.

When you have Lyme disease, you should not be in charge of hiding Christmas presents. You will never remember where you put them. You will never remember that you even hid them! Bad, bad idea! But finding them in the back of your closet in July is always exciting. Wrap them up and try again next year.

It is always okay to break your sugar-free/gluten-free/dairy-free diet for tiramisu.

Eating dinner at the table is overrated. It is much more couth to eat dinner in the bathtub.

If you can't figure out what is wrong with your tea, always check that you remembered to put in the tea bag.

Lyme disease dinnertime dress code: two very mismatched socks (totally unplanned, of course) paired with your favorite pajama top (dessert privileges for you if said pajama top is tucked into your underwear). Pants likely fall off of you, so unless they have a drawstring, they are optional. (Warning: only heed this advice if not eating dinner in the bathtub.)

Start your own branch of the Lyme Disease Bathroom Texting Club.

When you hear the tea kettle whistle, make sure it's not actually the smoke alarm going off.

Never skip a nap after folding laundry, washing your hair, walking up steps, opening the fridge, etc. Pretend you are a baby and nap as often as you like. If you can't actually fall asleep, put yourself in your room and play quietly with your toys.

Lyme disease will provide you and your friends with ample opportunities for never ending awkward situations. Always laugh at yourself and find a good friend who likes laughing at you, too (and doesn't mind the occasional punch to the stomach for doing so).

Sunday, February 20, 2011

Time Stands Still

This picture floors me with emotion. It captures one of the most intense moments of my life, frozen forever in time. Tears are streaming down my face. I am letting go of that lovely little pony. She is leaving my life forever.

She was never mine; she belonged to someone else. I understood that and she understood that there was a fragile girl that needed to latch on to her for a short time. She understood my newly broken heart from the sudden loss of my beloved first horse. She knew I needed someone to pour my horse-heartbroken-heart out to. She caught my tears in her tri-colored mane and she listened to my secrets.

In this picture, I am letting go of her; I am letting go of my own horse; I am letting go of my dream of owning another horse. I am too sick. I am terrified for my health. My body is at its frailest from my Lyme disease. I am down to 100lbs. I have used every ounce of strength in my body and soul to walk out to that precious pony. Every step it took to walk out in that field was agonizingly painful and it was a miracle that I made it. But I needed to thank my little guardian angel pony and I know she understood every word I whispered in her ear.

She eased my pain through the scariest of days: my introduction to the brutality of Lyme disease treatment. I set up my favorite picture of her next to my bed (the picture at the bottom of the page) and I dreamed of nothing more than currying her soft fur and running my hands through her gorgeous mane.

In the picture of the two of us, I am letting go of so many beloved things and my heart is in pieces, but that moment was a monumental turning point for me. There is strength captured in that picture like I've never seen in myself in any other photograph. That is the day that I truly stopped fighting against my Lyme disease and I learned to work with it.

That night, I grieved for my horse; I grieved for my health. Hardest of all, I grieved for my old life- my freedom. I cried a river. And then I picked myself up and I finally accepted my disease. Slowly, I shed my negative attitude. I cleaned up my diet. I stopped pushing myself and let my body rest. I learned to love my body, and to praise it for its hard work.

Lyme disease has made a new person of me. I like the new me much better, but I shudder to think of all I've had to go through to get where I am now. I still struggle immensely but I've come a long way!

When I look at that picture of me hugging that beautiful little pony with the big heart goodbye, my heart radiates back to her the love that she showed to me. She put the glue on my broken body and soul and gave me the strength I needed to put my life back together.

I will always love you, precious Nysa Pony.

Thursday, February 17, 2011

Lyme Disease Article

I came across this beautiful article about Lyme disease today. Please take a few moments to read it.

Tuesday, February 15, 2011

What I Wish I Would Have Known About Lyme Disease

The most frustrating part for me of having Lyme disease is the lack of awareness surrounding the disease. Apart from what they've learned from me, my friends and family don't know anything about my disease. In fact, the only people I know of that know anything about Lyme disease are either those who have it, or those who have a loved one with it. It is spreading like wildfire, while the task of educating people about Lyme disease has been left to those of us who have the disease.

Misdiagnosis is a huge problem with this disease. Doctors are not looking for it. It took countless doctors before I got the correct diagnosis. Because of that mistake, I might not ever be totally well again. The Lyme bacteria had time to disseminate throughout my entire body: it's in my brain, my organs, my joints, etc. What could have been easily treated in the beginning now causes me excruciating pain every day that may never go away.

The number of cases of Lyme disease are on the rise and it is believed to be spreading more rapidly than AIDS. What I wish I would have known about Lyme disease is that it is preventable! Our children learn in school about preventing AIDS, doing self-exams for cancer, and the importance of safe sex. Did you know that children have the highest risk of contracting Lyme disease? So why aren't our schools teaching them the simple ways to prevent Lyme disease, how to properly remove a tick, and the warning signs of Lyme disease?

Our children are not allowed to attend school until all of their vaccinations against childhood diseases are up to date. While there is currently no vaccination against Lyme disease, prevention is key. If our children were taught in school how to prevent tick bites in the first place, and properly educated on what to do if they do discover an attached tick, we could stop this rapidly spreading, and PREVENTABLE, disease in its tracks. The less we are educated about it, the faster it is going to continue spreading.

Sadly, lack of education about Lyme disease means very little money is going into research for this disease. Without that, there is no hope for a cure for people like me and countless others who have very complicated cases due to misdiagnosis (which is very common). Please check out this website for Columbia University Medical Center's Lyme and Tick-Born Diseases Research Center and consider making a donation for Lyme disease research.

The most important thing you can do is to educate yourself and your children. Remember, Lyme disease is found in every single state in the United States and many other countries throughout the world. It is usually easily treatable in its early stages. However, when it is left untreated for too long, usually because doctors aren't recognizing the signs, it turns into a painful and crippling disease that is very difficult, sometimes impossible, to eradicate.

I hope you'll take the time to click on the links I've included throughout this post. If I could prevent just one person from going through what I went through, it would be worth all of this pain! Knowing about Lyme disease could have saved me from going through the agony of this disease. I hope you will repost this and help me spread awareness for Lyme disease.

Friday, February 11, 2011

Mirror, Mirror, on the Wall

Last night, I looked in the mirror -really, really looked at my body. My hormones are so out of whack from my battle with Lyme disease that my face and back are broken out. My hair is coated in a thick layer of grease that just doesn't wash out no matter how much I rinse it. I have itchy rashes everywhere. There are dark circles under my eyes. My hips and ribs jut out. My clothes hang off of me. I. AM. SKIN. AND. BONES.

But as I stood there looking in the mirror, I felt such love for my sickly, frail body. I got teary thinking about the things I couldn't see, like how hard my body is working to make me well again. My organs are in overdrive processing all of the medicines I take and flushing out the sudden overload of toxins from the dying Lyme bugs (aka a Herx).

On the outside, my body looks rather pitiful. But still, I am beaming with pride for my hardworking body. There's a war going on inside of my body and it is fighting so hard to give me what I want: to be healthy again. I almost missed the beauty of that, because I was too busy focusing on what Lyme disease has taken from me, instead of what my body has done for me.

Thank you, my beautiful body. I promise to do my best to keep up my healthy diet, take my medicines and supplements, and take care of you as best as I can! I promise to try not to focus on my flaws (hello, acne!) and in the future, I will try not to take for granted all of those wonderful things you do for me that I can't see.

Wednesday, February 9, 2011

Stages of Grief

Recently, I noticed myself trying to bargain, and with whom I'm not even sure: If I could just try this medicine or that treatment, I know I'd be cured and I wouldn't have to be sick anymore! I realized that without me even being aware of it, I was going through the five stages of grief.

I did a quick run-down of the stages: denial, anger, bargaining, depression, and acceptance. Hmmmm...

Denial-check: "Maybe it's not really Lyme disease."
Anger-check: "HOW COULD THIS HAPPEN TO ME??!!"
Bargaining-check: "If I could just try this medicine or that treatment, I know I'd be cured!"
Depression-check: "Woe is me! My life is ruined forever!"
Acceptance-check: "I cannot change the fact that I have Lyme disease; I can, however, change myself."

I no longer think my life is over. I do think it will always be different, but whether or not that's a good thing is up to me. My attitude has done a 180. Why, I believe maybe hell hath frozen over and my glass is now half full!

Monday, February 7, 2011

Jingle Bells, Lyme Disease Smells

My stomach, which I believe was trying to gurgle out either Morse code or Christmas carols all day, has been trying to figure out why on earth I would possibly add another medicine into the current barrage on my Lyme disease. I will spare you the details and just let you know that I have a very delicate tummy. I had to dig the dreaded Aloe Vera Juice out from the back of the fridge. It smells oddly like cowboy boots, and tastes like I would imagine them to taste.

My strongest symptom today was severe nerve pain in my left leg, which forced me to walk like a penguin all day. I also had general flu-like aches all day. I have those aches on most days; it's something I've learned to live with and I don't think much about it. Except I'm thinking about it right now! Because I just told you. Are you paying attention at all?!

I usually get chilled to the bone once a day, usually around midday, and today was no different. The chills that come with Lyme disease are pretty intense-no amount of clothing or blankets helps. It is a sight to see me wearing everything I own and then zipping myself into my zero degree sleeping bag and still shivering. It makes me look like a sexy bag lady!

Saturday, February 5, 2011

Keep Smiling

I have been trying to find a way to look at Herxing in a more positive light. I decided today that I wanted to start a "wall of smiles" by my bed-a place where I can put funny pictures and little bits of inspiration to help me when I'm fighting through a vicious Herx. Then I decided I'd rather start a journal so I can keep it and add to it as I go through my Lyme disease journey.

I purchased a beautiful journal tonight, and found a book from the bargain bin on quotes-which I love to read when I need strength-and I fully intend to cut and paste the heck out of that book. I'm so excited to start my Happy Herxing Book! It will be full of things that make me smile. I've got my scissors and I've got my Mod Podge (for all of you non-artsy folk who've never heard of it, it's a type of glue)! Take THAT Lyme disease!

On a different note, I had my second acupuncture treatment today and it was pretty cool. Maybe it was a coincidence because I was already having a good day, but I felt FANTASTIC afterward! It was such a blessing to have an awesome day and it served as a reminder of exactly what I'm struggling through Lyme disease for. It may sound strange, but I forgot that I'm actually fighting for a goal: my health. It's easy to lose sight of that when you've been sick for so long. It was also a little sad when I realized I actually had forgotten what it felt like to feel healthy again!

After my acupuncture appointment, I came home and choked down my new antibiotic, Mepron, for the first time. It is a liquid, and I'm telling you it tastes every bit as good as it looks (whoever said it has no taste lied to me)! It's a lovely neon yellow color and I'm not fully convinced that it's not actually radioactive. I promise to take a picture of it soon!

Like I said before, I've got my scissors, I've got my Mod Podge: Now bring it ON, Herx (but not too much, please)! This time I'm ready.

Thursday, February 3, 2011

Lyme Disease Blues

Aly's got the Lyme disease blues,
Went to the doc and got bad news.

Two antibiotics ain't strong enough!
Hold your hats, it's about to get rough.

Time to pull out the big guns;
Yep, they'll give you the runs!

These pills are gonna knock you down,
But they'll chase your Lyme right outta town.

Herxing is scary, but you've gotta do it;
Chin up, girl, you'll get through it!

I know you're scared, Aly, dear;
But please remember: Have no fear.

The ones you love will hold your hand,
While you walk the road leading out of Lymeland.

Before you know it, you'll be Lyme-free;
It'll happen soon, just you wait and see!

Wednesday, February 2, 2011

Life Lessons

The end of this month marks one year since Lyme disease knocked the pants (and a few pants sizes!) off of me. Whether or not I wanted to, I've learned a lot from Lyme disease over this year.

I shudder to think how naive I was in the beginning. I was told it was "just mono" and I'd be back on my feet in 4-6 weeks. My husband was a busy law clerk for a judge with no mercy for the hours he was to remain tied to his desk at work. What were we going to do? Who would watch our two kids and take over my job of homeschooling the oldest? I could barely move and my pain was horrendous (remember, it wasn't actually "just mono"). It was inconvenient, but surely we could make it through because it was only 4-6 weeks...Right?

Wrong. The weeks turned into months and I was getting worse, not better. My pain was getting more and more unbearable. And one thing became clear pretty quickly: life kept on going whether or not I was healthy! I realized that it was up to no one but me whether I chose to cherish my days or throw them away. I could make the best of things, or I could continue on the path I was on and lose day after day to my battle with chronic illness. Those were precious days, too. My kids would never be that little again and I was missing out! I clung to this quote by Emerson, "Write it on your heart that every day is the best day in the year."

That brings me on to the next lesson I learned: acting how I feel is not an option. I have a lot of pain. Pain makes most people very grumpy. Being grumpy all the time is not acceptable! So, I try to laugh often. I surround myself with people who make me laugh. I watch silly movies. There is nothing in the world as wonderful as the friend who can make you laugh when you're in a great deal of pain!

I've learned that optimism is the only way to avoid being swallowed by the pain of this disease. I am a glass half empty girl by nature. No one in my family ever had a full glass, so why should I? Well, it became pretty obvious that my negative attitude pulled me down into a self-pitying abyss that was pretty hard to climb out of. I don't ever want to go down that road again! I catch myself slipping back into my old ways often, but that is good because when I catch myself, I can correct myself.

Lyme disease has changed me so much this year. I fought kicking and screaming in the beginning. I begged for mercy; I cried for my lot; I mourned for all I lost. But now I can see all that I've gained in the process. I am a stronger person than I was a year ago. It is so wonderful to see good come out of such pain, though it would be fantastic to just cash in on my life lessons and be done with this whole Lyme disease thing once and for all. However, I have a feeling that my lesson isn't quite over, so I have to just keep moving forward and wait for the day when I can say, "I am cured!"

With that, I will leave you with two quotes that I meditate on when things get rough:
"Endure and persist, this pain will turn good by and by." Ovid
“A truly happy person is one who can enjoy the scenery while on a detour.” Author unknown