Today, I Have...

Laughed at myself
all bundled up and still cold,
fighting as hard as I can fight--
the hardest day
I've ever faced
in all of my 30 years.

I have cried,
I have laughed,
I have shook,
I have shivered,
I have whimpered,
I have prayed.

I have smiled,
I have dreamed,
I have given up,
I have kept fighting,
I have fallen,
I have picked myself back up.

I have loved,
I have hated,
I have trembled,
I have danced,
I have tickled,
I have prayed.

Today, I have lived,
truly lived.

Courage

Tomorrow is a big day for me. Aside from my regular antibiotics, which are kicking my butt this go around, I have to add in a monster dose of a new medicine--5 pills spread throughout the day. This is all part of my babesia treatment, which is brutal, but is helping. 

I'm trying so hard to be brave and to build my up enough courage to fuel me through whatever tomorrow brings. My fears are fighting to get the best of me. My biggest fear is not even the  pain--I can handle the pain. It is the weakness that scares me. To be so weak that I cannot talk; to be so weak that I cannot get up and go the bathroom--that scares me with every cell in my body!

With Lyme disease there is simply no easy way out--you MUST get worse to get better. This is the part of my disease that I would rather shield the world from. But it's like the seasons of life--we must endure the cold, bitter winter and, then and only then, are we rewarded with the sun on our backs and the smell of flowers permeating the air. 

I will simply persist through this stormy part of my journey. I know I will one day have my health back and I will triumphantly gallop off into the sunset! For now, I will hang on to my dreams and I will fight like I've never fought before.

 “Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.” Alice M. Swaim

The Distance I've Walked

 

During this antibiotic break, many of my Lyme disease symptoms that were being held at bay by antibiotics have come roaring back. I was supposed to have two weeks off of antibiotics, but after talking to my doctor on the phone a few days ago, she decided it would be better for me to start back up again and do three weeks on antibiotics and only one week off--instead of my normal two weeks on and two weeks off.

It may sound strange, but I didn't even realize many of my symptoms had been gone (or had become mild) until they came back! In fact, I didn't even realize how much progress I've made in treatment until several days into this medicine break, because the improvements over the past several months have been very subtle.

Without antibiotics this week, I've had daily headaches, light sensitivity, restless leg syndrome, asthma attacks, joint pain galore (knees, elbows, fingers, jaw), huge Lyme crashes that render me useless for hours at a time, etc. I have many other symptoms, but those are the main ones that have been relatively quiet (with continued antibiotic treatment). The improvements that I have felt have come after having a few months of intense babesia treatment,. Turns out, that weird yellow "paint" I've been drinking is working after all!

My A.M. dose of antibiotics have already gone down the hatch. I'm actually happy to start back on treatment, although it means I have been given a one-way ticket to Herxville. But instead of focusing on the Herx, I'm trying to focus on the continued improvement that I hope comes with this cycle of treatment (and the next and the next...).

Ticks Have Feelings, Too!

Gotta love The Onion

 

La Dolce Far Niente

La Dolce Far Niente/It is sweet to do nothing

A few days ago, my three year old spent nearly two bliss-filled hours playing with water in the sink. I watched his childlike joy and fascination of his world--a joy that children naturally radiate, but that most adults have long since abandoned. I wrote it off as simply something no longer possible for adults to enjoy. Life is simply too busy for such idle pleasures.

A few days ago, I started watching the movie Eat, Pray, Love. My body and mind have been too restless to watch it straight through in one sitting, but luckily I don't mind spreading it out over the course of several days. One part of the movie that has really spoken to me is something the main character learns about called "la dolce far niente," which, in Italian, literally means "it is sweet to do nothing." Here is a wonderful explanation of la dolce far niente in the context of the movie.

 After doing some research on this business of "doing nothing," I realized that since I got sick, Lyme disease has already given me gentle nudges in the direction of la dolce far niente. My absolute favorite way of achieving sweet, blissful nothingness is to lie on the grass at the stable with horses grazing nearby. They radiate a peace that we humans--who have become addicted to Facebook, emailing, texting, blogging, television, etc.--have lost in our daily lives. Horses embody all that is la dolce far niente, and perhaps that is what draws me to them.

But while I can easily enjoy la dolce far neinte at the stable, doing it at home is another story for me--complete with a million distractions blocking my way. This is embarrassing to admit, but over the past few months, I've developed quite an addiction to my phone. I even confess to frequently texting from the bathtub! Yesterday, after setting my mind on achieving la dolce far niente, I took a bath and purposely left my phone behind. Also left behind were other sources of my usual distractions: books, magazines, music, etc. I wanted to really and truly do nothing.

The funny thing is, after a few minutes in the tub without anything to occupy my mind, I noticed myself humming and singing out loud. Without thinking about it, I rolled over on my stomach in the tub and blew bubbles in the water. I made shadow figures on the wall. Without all of my usual distractions, I was surprised to realize I had naturally turned into my three year old! Then it dawned on me that I had just achieved that childlike bliss that I'd been admiring in my child a few days before and thought was no longer possible as an adult: la dolce far niente.

Lyme Disease and Co.

Most people know that ticks can carry Lyme disease, but unless you or someone you know has Lyme disease, you probably haven't heard of several other tickborne diseases that you can also contract from a tick bite--infections with funny names like anaplasmosis, babesiosis, and bartonella, to name a few. These co-infections, as they're usually referred to when they go hand in hand with Lyme, have their own set of symptoms that can be just as debilitating as Lyme disease itself.

Not all ticks carry Lyme disease. But on the other hand, some ticks carry not only Lyme disease, but one or more co-infections. As the co-infections are becoming more and more widespread, Lyme disease cases are becoming more complicated to treat. People with Lyme disease and co-infections are very, very sick.

The past few months, I've been doing treatment specifically for babesiosis, one of a handful of co-infections given to me by the kindly tick that also gave me Lyme disease. Since starting treatment for babesia, I have noticed a slight improvement in my health. It is only a tiny baby step, but it is unmistakably my first step forward. I feel like I've reached my first milestone!

With two months of babesia treatment now under my belt, I have just entered into my two week break before I begin my third cycle of (insert expletive here) antibiotics. My Lyme disease has been having an absolute heyday without the assault of antibiotics. My joint pain, which has been relatively quiet lately, has been, ummm...not so quiet. Ouch! My headaches have been back and I've just felt really cruddy.

Both yesterday and today, I've had huge Lyme crashes where all I could do was lay in bed and whimper until the wave of pain/bone-crushing exhaustion passed. Both times I was rendered 100% useless for about two hours. Oddly enough, those are usually the times I come to terms the most with my disease because they require extreme inner strength.

It's been a long time since I've had such strong and long lasting crashes, but that is a good sign-- it means the antibiotics have been doing their job. It's like that saying: when the cat's away, the mice will play. When you attack the Lyme spirochetes with antibiotics, they can actually turn into a cyst form to evade the antibiotics. When the coast is all clear (i.e. my two week break from antibiotics), they can change back into a spirochete shape. That's when we swoop in with more antibiotics. It's very complicated! So on that note, it's time to end this blog entry with a gratuitous picture of my cat. Just because he is cute.

Shiloh

I felt well enough yesterday to go to the barn for some much needed horse therapy. Though it's still hard for me to go there since I lost my precious horse, Shiloh, the barn is still my happy place and I need that now more than ever during my intense battle with Lyme disease. It was so peaceful lying in the grass next to the horses and drinking in the sunshine. How my heart missed that!

For the first time since Shiloh died, I walked around the pasture that she called her home. Suddenly, I remembered something. I walked into her barn and looked up into the rafters and there they were: the birds nests accumulated over the years, woven with silky white horse hairs from my beloved pony!

Shiloh was known around the barn for her ability to grow and completely shed out the most incredible winter coat that anyone had ever seen. Mother birds greedily snatched up tufts of Shiloh's silky soft fur off of the ground for their nests and their baby birds never went cold.

The nests are now old and vacant, the birds have long since grown and flown away, and my beloved pony is gone. But just like the horse hairs painstakingly woven into place by mother birds, Shiloh's memory is forever woven deep in my heart. Like the safety of a nest, she was my warm safe place where I could take refuge from the storms of life. She tucked me under her wings for 5 years. She was my mama bird and she taught me how to fly. I will love her always.

Congenital Lyme Disease

Today, I'm going to breach a topic that has been off limits in my blog--congenital Lyme disease. The reason it has been off limits is because it hits a little too close to home for me--it involves my own precious two children. If you know anything about Lyme disease, you are probably aware that every aspect of it is hotly debated. But if Lyme disease itself is controversial, it's got nothing, and I mean nothing on congenital Lyme disease.

If there was an accurate test that could say whether or not someone has Lyme disease, my life, and the lives of so many others would be very different. I mentioned a few weeks ago that I had blood work done at a different lab and I tested CDC positive for Lyme disease. That was nothing short of a miracle! However grateful I am of that miracle, it does nothing to help sort out the mess that has been made of my family in the wake of Lyme disease: trying to figure out if I inadvertently passed Lyme disease and co-infections on to my beloved children.

Both of my children have several symptoms of Lyme disease--rage behavior, failure to thrive, sleep apnea, just to name a few--enough to warrant having both of them tested. The kids have both tested positive for antibodies to Lyme disease--meaning they were both exposed to it. That's as good as the tests get--they detect antibodies, not the actual disease itself.

Neither of my kids have ever had a (known) tick bite, which means that given my history of misdiagnosed-for-years Lyme disease, it is highly likely that they were exposed in utero. However, because of the problems with Lyme tests, my husband and I (and countless other families in our shoes) do not have the peace of mind we so desperately deserve, especially when it comes to our children.

There are high risks involved in treating Lyme disease. However, there are higher risks from untreated Lyme disease.  I want peace of mind, but I can't have it. I am in charge of the health of myself and the health of my children. Sometimes, that means making decisions that I'd rather not make. That also means facing a lot of flak from well-meaning friends and family who don't have all of the facts.

Please remember that whatever decision we make as a family--whether to treat our children or not--it is ours. You'd be amazed at the hurtful things people say about Lyme disease, especially when children are involved. What we need most is support, not judgment.With Lyme disease, nothing, nothing is certain. However, what is certain is that my husband and I love our two children more than anything in this world and we want only the best for them.

Earthquake in Japan

My God, I can't even wrap my mind around what is going on in Japan.. My tear stained face and aching heart knows nothing, absolutely nothing of the pain these people are feeling right now. And all I can do is cry helpless tears for a country absolutely broken beyond anything I can comprehend.

I can't help but think about all that I have and just how very lucky I am. I have a house and food and water and things--so many useless, stupid things.  What matters most to me is my family, and they are safe and sound and tucked into their beds upstairs above me. Safe; we are safe. And oh, how we take that for granted every second of every day!

I can't sleep! Here I sit at my computer, sipping my favorite tea (my beloved Japanese tea!),  with a roof over my head and with a full belly; with heat and electricity and water.  I feel so helpless and it feels so wrong to be sitting here with everything while thinking of those who have suddenly ended up with nothing!

I am only one person. What could I possibly do? What could I possibly give to make a difference? The answer is money. I don't have a lot, but as Mother Teresa said, “If you can't feed a hundred people, then just feed one.” 

There are so many worthwhile organizations to donate money to. I hope you will give a donation, however large or small, to help the victims of the earthquake in Japan.  Here are just a few places to consider making a contribution to: ShelterBox,  Doctors Without Borders, The American Red Cross, Worldvision.

Lyme Disease: A Chronic Pain in my Butt

My husband was telling me about a program he was listening to yesterday morning on NPR about treating chronic pain. Since the program was on at an ungodly hour (7 A.M. on a Saturday morning!), and since I am not a morning person, I missed the program.

My husband explained the three different types of pain they talked about. One group of chronic pain was nerve pain; one was muscle, joint, and ligament pain; and the last group was organ pain. Of these three groups, the most difficult to treat is nerve pain. You can prescribe narcotics, but they do little for this kind of pain.

Listening to my husband explain this to me, I found myself getting angrier and angrier. Because of the complexity of Lyme disease, the lack of reliable tests, and various other factors, Lyme disease is extremely misdiagnosed and under-diagnosed. It took a year worth of doctors for me to finally get properly diagnosed with Lyme disease!

In the beginning of my illness, when my pain was at its worst, I would get shooting pains up my legs and was literally crawling across the ceiling in agony. I begged God to let me die--every single day. I went to my primary care physician multiple times in tears because of the amount of pain I was in. I told him that every single day on a scale of 1 to 10, my pain went all the way up to a 10.  However, because my mono test was positive, that was that and he was done with me. He finally agreed to give me Darvocet, but when I told him it didn't touch the amount of pain I was in, he, assuming I was just another person begging for narcotics, told me, "I'm not comfortable giving you anything else and I'm writing that in your chart."

In hindsight, I know that what I was experiencing was nerve pain in my legs, and according to the program my husband was telling me about on NPR, narcotics don't help that kind of pain anyway. I was left with excruciating pain, zero help for pain management, no clue as to what was making me so sick, and the awful feeling that my doctor--whom I deeply respected up to that point--thought I was a junkie. That incident left a bruise on my heart that has yet to heal, nearly a year later.

I  know now that the reason for all that pain was that I had a vitamin D deficiency, a raging case of mono, Lyme disease and multiple co-infections. After the Darvocet incident, I knew it was time to move on to another doctor who would listen to me, believe me, and help me with my pain--both in treating it and in actually figuring out what was causing it. Sadly, the opposite happened. It got worse and worse as I struggled to drag  my aching, failing body from doctor to doctor who shook their heads at me and said nothing was wrong.

I am thankful that I didn't throw in the towel when my pain was through the roof. I have a lot of pain on a daily basis, but not nearly as much as in the beginning, especially now that I've been in treatment for 6 months. I credit a very dear friend who is a massage therapist with getting me through the worst of my pain. But other people aren't as lucky as me.

The number one cause of death from Lyme disease is suicide. Go back and read that sentence again! Lyme disease causes more pain than anyone can imagine. Estimates claim that only one in ten cases are being diagnosed. If that's true, that means 90% of people with Lyme disease are undiagnosed and without help with pain management. How many people will we have to lose before doctors start educating themselves and actually listening to their patients?

I am a mother, struggling to take care of my family. My pain is real; my symptoms are real. This is my voice, my story--the story of Lyme disease. This story is mine, but it is common. This disease is spreading quicker than the knowledge of preventing it. 

Living Like a Celebrity

This week was fantastic! I had full-time help all week for the first time since I got sick--not only with my two children, but also for me. Highlights from this week of being ridiculously pampered include: several massages, including my first hot stone massage (which was heavenly!); several of my favorite foods (chili!); my new sauna; being able to actually rest when I needed it and for as long as I needed it; help with the oodles of housework that has been severely neglected, etc.

On Wednesday, my infrared sauna came in the mail.  I have used it three times so far and I love it! I wasn't sure if I'd be able to tolerate it very well, since my Lyme disease makes me incredibly heat intolerant, but actually it's very relaxing.

An unexpected bonus came with my sauna: a booklet of humorously-translated directions. One of my favorite parts is,  "Action inconvenient people, old man and children must use it under adult's guardianship!" This one tugs at my heartstrings, "Heartfeltly thanks for purchase our product."


Alas, all good things must come to an end. Since paying for full-time help regularly is not an option on our budget, on Monday I return to having only part-time help. However, I am full of "heartfeltly thanks" for my week of living like a celebrity, even though I am pretty sure I am an "action inconvenient person!"

The Best Bad News, Ever!

Without a CDC positive Lyme test, mainstream doctors scoff at a diagnosis of Lyme disease. However, a huge number of people aren't CDC positive for Lyme disease but still have Lyme disease (it is rumored that the CDC is under-diagnosing by tenfold).  It is VERY difficult to get a positive test result by the CDC's rigid standards. I repeat, VERY DIFFICULT!

A few weeks ago,  my doctor sent my blood to a different lab than we tried initially, and, drum roll please, my test came back CDC positive for Lyme! This is seriously the best bad news I could have asked for!

Now that I am officially CDC positive, this means that I have complete validation of my disease, both for myself and for other doctors who don't "believe" Lyme exists here. I will also be able to be counted as having Lyme disease in my state.

To hear for so long that there's nothing wrong with me and that it's all in my head--well, you can't even begin to imagine what this positive test result feels like! There was always a little doubting voice in my head saying, "Maybe it's not Lyme; maybe it is all in my head."

I can't help thinking of the very nasty rheumatologist who, when I was very, very sick and desperate for a doctor to take my pain seriously, looked at my curved, bent, arthritic, inflamed hands and told me nastily, "My hands look like that, too!" (Let's not mention the fact that she was in her late 50s and I was in my late 20s) Of my new doctor who I mentioned was going to give me a Lyme test, she retorted, "If you go to her, she's going to tell you you have Lyme no matter what!"

Guess what? I did have Lyme, even though the rheumatologist and many other doctors didn't want to hear it.  And now, I get the peace of validation. It's bitter sweet, though-it means I have Lyme disease. It means I am an outcast by the medical field. If people knew even a snippet of the abuse that Lyme victims go through to get diagnosed and treated, they would be appalled. And no one is standing up for us. But now, at least I am one of the lucky few with a positive CDC test. And that, my friends, is the best bad news I could have asked for!

What It Feels Like

This is what it feels like to have Lyme disease:

Inner Strength

I really wouldn't be here without the help of some pretty amazing people. They have held my hands through some very dark days of Lyme disease and whispered strength back into my ear. However, they can only carry me so far. I had to, and have to, do the hard part by myself. I have to bear the pain, I have to remain positive, I have to keep going when I want to throw in the towel.

It is a constant struggle to find the strength that I need in myself, not in others. I have a tendency to lean on others too much when things get rough. When I need to turn my focus back to where it should be--the courage inside of myself--these quotes really help me:

“Every man has his own courage, and is betrayed because he seeks in himself the courage of other persons.” Ralph Waldo Emerson

“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

“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.” August Wilson

The Best Medicine

Everybody knows that laughter is the best medicine. The Office and The Cosby Show always make me laugh. I also love www.damnyouautocorrect.com and www.icanhascheezburger.com.

I'd love to hear what tickles your funny bone! In the meantime, here are a few things that make me smile:

Today

“I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it.”  Groucho Marx

Mepron

I thought I'd share these lovely pictures of my newest Lyme medicine, Mepron. It looks like paint, it has the consistency of paint, and I am 99% sure it's radioactive. I am almost done with my first cycle already: two weeks on antibiotics, and two weeks off.

The best part about being on Mepron is my insatiable urge to photograph its strange yellow color*, which looks EXACTLY like the yellow paint in kindergarten art class. And just like a kindergartner painting, I'm usually covered from head to toe in primary yellow after taking my Mepron**! It stains my lips, my teeth, my tongue, my clothes (yeah, I'm clumsy!), and the dosing spoon. I like to leave my face yellow for a while, pretend I'm a big scary monster, and scare my family members! Roooar!



*The pictures above were taken with a web cam and do not accurately reflect the actual color.
**Do not confuse what I just said and let your kindergartner paint with your Mepron--that little bottle costs around $1200!


This post is dedicated to my Lyme friend, Heather ,while she struggles with her own goopy paint medicine! Hang in there, Heather! Keep making Mepron monster faces!