Wednesday, June 29, 2011

May This Day Find You....

May this day find you snuggled in the arms of someone you love.

Just Another Update in Lymeland

Yesterday, I started back up on another treatment cycle for my chronic Lyme disease: my usual three weeks on antibiotics and one week off. My stomach gave me a few problems here and there, but I fixed that up with a Kombucha. Other than that, I felt really great. I had very minimal pain yesterday and I was able to get a lot done around the house.

I noticed that my brain felt much clearer than normal--a much welcomed break from the intense Lyme fog that leaves me walking around feeling like I am in a daze most of the time. I didn't even realize just how much I had been struggling to follow a simple train of thought until that fog lifted and I realized my brain was back. It is amazing the things you get used to!

Here's to many more good days ahead! 

Tuesday, June 28, 2011

Woman's Best Friend

 If dog is man's best friend, horse is woman's best friend!

Monday, June 27, 2011

Washington, D.C.

This weekend, we took a quick trip to Washington, D.C. to visit some friends and to go sightseeing for my son's eighth birthday--something he's been begging to do since his best friend moved there a year and a half ago. My husband couldn't get off work early on Friday, so we didn't cruise out of town until late on Friday evening. It was supposed to take about three and a half hours to get there, but it took quite a bit longer than expected.

The trip there was one of those trips that ends up being a good story for its drama factor, but not much fun at the time! The excitement began before we even left town. My husband got home from work and stopped at the grocery store to pick up two prescriptions for me and a few other odds and ends, and in the rush managed to forget my prescriptions in the bottom of the shopping cart.

My husband came home from the grocery store and I started rummaging through the bags for my medicine but I couldn't find them. Hubby quickly realized what happened, so we finished packing up the car and drove back to the store, desperately hoping that someone would have been nice enough to turn in my medicine. We lucked out and someone had turned in my medicine to the pharmacy! It was a bit of a rocky start to our trip, but we laughed it off. (Oh, we were so young and innocent back then!)

Things were going pretty smoothly and we were making great timing until we hit the beltway in DC. It was around 10:30 P.M. at that time and the kids were still awake and giddy with excitement. Sadly, that's when our fun ended--we hit major construction and it took around two hours to go only a few miles. (We eventually discovered the reason for this was that, because of the construction, they reduced five lanes of traffic down to one--yikes!)

Our generally patient car travelers in the backseat--who shall remain nameless--lost their patience pretty quickly. Of course they did! But, oh my, you've never heard such screaming! Our air conditioner was broken, so--sorry to the other folks on the beltway--we had to keep the windows down. I had to chuckle as a car kept passing by with music roaring and passengers laughing and dancing, colliding with the screams of death coming out our windows.

I was dying to go to the bathroom, because when you're stuck in traffic for a long time someone has to fill that role! Shortly thereafter, our little country car decided it couldn't handle the big city stop-and-go traffic anymore! Our car--lovingly referred to as Green Machine--started idling like it was going to stall out at any moment, and our radio and lights kept going out (experience and listening to Car Talk tells me it was the alternator).We were only ten miles from our friends' house, but with the traffic, there was no way they would have been able to get to us to help.

Suddenly we heard a loud CRUNCH! My husband and I looked at each other, wondering if something had just fallen off of our car. Luckily for us, and unluckily for the folks in the lane next to us, there was a little fender bender. We sighed a little sigh of relief, and my valiant husband kept up his job of sweet-talking Green Machine into not throwing in the towel, or at least not until we got off the beltway!

I had three jobs: first and foremost, DONOTPEEMYPANTS; second, try to keep the angry passengers in the back seat from revolting; third, and finally, offer my left leg up to the gods if they would just get us there safely, which they did (and they graciously let me keep my leg, too)!

Perhaps due to the fact that my Lyme disease has thrown us every curve ball under the sun, we managed to survive the incredibly dramatic trip to Washington, D.C. Our wonderful hosts--sleep deprived parents of three young children--graciously kept watch for us until we finally arrived at their house slightly past one A.M. It took a little more than five and a half hours, but we made it! Our friends were a little surprised to see us laughing at the drama of the situation, but what can I say--Lyme disease has really toughened us up!

The rest of the trip was a blast. I forgot my camera when we went into the city, so I have no pictures to document our trip except for a few that I took with my camera phone. Whoops! We went to the Air and Space Museum  on Saturday (I rode in a wheel chair), and then we ate lunch at the Mitsitam Cafe in the Museum of the American Indian. Our friends assured us that the food there was amazing, and it was! I had wild Alaskan salmon, which was quite yummy!

Weak proof that we were actually in D.C.

The grownups rested on the National Mall, while the kids ran around and played. It was a blast, but, wow, was I exhausted! Our friends were such great hosts and I'm so glad I went. I had such a good time even though I was feeling incredibly achy and exhausted most of the time. Take that, Lyme disease!

Our drive home yesterday morning was uneventful, which we were quite happy about! It took exactly three and a half hours, as it should have.

Thursday, June 23, 2011

Fall Down


"So go ahead. Fall down. The world looks different from the ground." ~Oprah Winfrey

Monday, June 20, 2011

Kombucha

A few months ago, I read about a fermented drink called Kombucha (pronounced com-BOO-cha) in the book The Lyme Diet. I really wanted to try it, but wasn't sure where to find it. A few weeks ago, a friend of mine casually mentioned a drink she had recently discovered called--you guessed it!--Kombucha. And her friend makes it, so she wanted to share some with me so I could try it!

She warned me that the first bottle might be a bit rough going down because it's an acquired taste, but after a few bottles you start craving it. I slowly drank down my first bottle, and yes, it was weird! It was like drinking those fizzy things you use to color Easter eggs--it was bubbly and it smelled vinegary. But, that day was a medicine day for me and I noticed that I didn't have stomach issues that day! Hmmm....

My friend was right--after a few bottles, I was hooked. And not only that, my stomach was happier than it had been in a while! So, I found myself hooked on Kombucha with no where to get it from (my friend lives over an hour away from me). Lucky for me, she told me that her friend had just given her part of her SCOBY--the Kombucha starter culture--so she could make her own Kombucha. The SCOBY reproduces and you can share it with friends. Last week, my friend brought me my own SCOBY!
My new SCOBY! It's like an organ floating in a jar!

After getting over the weirdness of my new creepy Thing-In-A-Jar, the first thing I had to do was feed it. The SCOBY eats tea and sugar, so I had to steep the tea, mix in the sugar, and add it to the big jar. (Well, it's a bit more scientific than that, but it is pretty simple.) Then, I put the Scoby in its new home where it was to sit and reflect with Buddha for one week.


SCOBY chilling with Buddha.


After a week, it's time to check and see if the Kombucha is ready for bottling. Today was the big day, so I tentatively took a spoonful and, lo and behold, it actually tasted like Kombucha! (Why was I surprised?!) That meant it was time for bottling! My friend gave me four old Grolsch beer bottles to use and I had enough of my Kombucha to fill up three bottles.

Trying not to make a mess!
Success! My very own Kombucha!


So now the bottles are going to their happy place for a week (I just leave them alone), then they can go in the fridge, and, Voila! Kombucha! Next Monday it will be time to taste my Kombucha, and bottle up the second batch!


Here are some Kombucha links if you're interested in learning more:
http://www.organic-kombucha.com/teakombucha2.htmlhttp://www.kombuchacultures.com/index.html
http://www.nytimes.com/2010/03/25/fashion/25Tea.html

This is my favorite store bought Kombucha, but it's pricey, so don't get hooked ;)

Sunday, June 19, 2011

Making Progress; Losing progress

Not long ago, my Lyme disease left me laid up most of my days. I had bursts of energy here and there, but that would usually come screeching to a halt, leaving me stuck like a beached whale without enough energy to move--what I refer to as a "Lyme crash." The result was that I would often have to have help getting upstairs to my bed.

Being too weak to walk even a very short distance is something that is hard to understand unless you've felt it (and I hope that you never do!). On my worst days, I had periods of time when I was too exhausted to even speak. On my worst days, I couldn't leave my bed other than trips to the bathroom. If the house caught on fire, I would have had great difficulty getting outside!

Over the last few months, I've only had a handful of Lyme crashes. I haven't had to be carried or piggy-backed in months. I haven't had to crawl up the steps or scoot down the steps. Thursday, even though it was a medicine day, I was able to go grocery shopping by myself--and for our family of four, that is no small feat! It really wasn't that long ago when even walking around the block was like running a marathon to my frail body, so managing a trip to the grocery store solo feels nothing short of a miracle!

While I have made incredible progress over the past ten and a half months of treatment for my Lyme disease and multiple co-infections, this weekend has been very tough. Yesterday, I had a new symptom, and, quite frankly, it was one of the worst. My calves started burning and it got progressively worse over the course of a few hours until it felt like my legs were literally on fire. I took a cool bath, which helped, but then I had another episode about a half hour later. On a scale of one to ten, the pain was an eight. The second episode didn't last as long as the first, and as of today, I haven't had any more.

When you're healthy, it's hard to imagine being sick. On the flip side, when you're chronically ill, it's hard to imagine being well again. Well, I've had my taste of feeling well again, and let me tell you it spoiled me! It didn't take long for a false sense of security to settle in. A little voice inside of me was whispering, "You're better now! You're through the worst of this wretched disease!"

Recently, my husband and I began tossing about the idea of pursuing my dream of purchasing another horse. I've been doing really well for a few months and I finally felt like I was in a place where I could care for another horse. Losing my beloved horse and being too sick to own another horse has been incredibly difficult for me.

When my legs were burning yesterday, all I could do was cry--equally for my shattered horse dream and for the sheer pain that I was feeling! I had no idea if that was to be my new normal. Would I have to deal with that agonizing pain all the time? Frequently? Occasionally? You don't get answers to questions like that if you have Lyme disease.

Honestly, I'm feeling pretty discouraged today. Though I haven't had any more episodes, I just don't know what to think! I feel like a rug was pulled out from under me--that old false sense of security that I was talking about. It's heartbreaking to have to give up on your dreams over and over again. I know that once I've had a chance to process things, I'll feel better. I'm planning a trip out to the barn this evening so I can hug a horse--the best cure for an aching heart.

Wednesday, June 15, 2011

Yesterday and Today

Yesterday, I had to take four--yes, four--antibiotics because of my babesia relapse. I was so exhausted, but not nearly as badly as I expected. I could still function, although I certainly didn't feel well. The kids watched a lot more movies than I would like to admit, but sometimes you've just got to do what you've got to do!

I used my sauna last night and it really made me feel better. I sweated more than normal and I wonder if that meant I had extra toxins in my body; maybe it was just a coincidence, though. Today, I feel loads better! Was it the extra dose of Lariam? Was it the sauna? Or am I just having a good day? Who knows? What matters is that I feel great today! 

Tuesday, June 14, 2011

Relapse

In my previous post, I mentioned the big "r" word: relapse. It's sad to post this, but it's undeniable--many of my symptoms are back. I was functioning at around 90% for a few months, and now I'm down to around 60% and declining a little more each day.

It has been a gradual decline over the past few weeks, and I am grateful that I've had time to adjust to one or two symptoms at a time. If you've ever had to take pain medicine and you've felt the exact moment of blinding pain when your medicine wore off, you may understand what I mean. Having all of my symptoms come back at once would be simply hellish.

There are a few things that happened that I believe caused me to relapse. The first thing that happened was that I got a massage after not having one for over a month (because I had been feeling so well). Many people with Lyme Disease Herx from massages, but--maybe because I've always gotten them two or three times a month--I don't usually Herx from them.

The second thing that happened was that since I was feeling so well, I did two weeks off of antibiotics instead of my normal one week off (with my doctor's permission, of course). When I started feeling well again and functioning pretty close to my old self again, it became extremely frustrating to continue taking massive doses of medicine. Also, we were going out of town to go camping and I didn't want the hassle of antibiotics to mess up my trip. Lesson learned: A little bit of an inconvenience is much better than a relapse. My body was not ready for two weeks off.

I believe that the biggest factor causing my backslide is stress. I'm doing my best to reduce as much stress as possible, which--as everyone knows--is easier said than done. And finally, the last thing that caused my relapse is that I've let my diet slide. And by "let it slide," I mean I'm eating gluten, dairy, and sugar again. Every day I try to get back on the Lyme diet, but every day temptation gets the better of me. I keep trying, though. I truly need to go to sugar rehab!

Even though I'm relapsing, at this point I can still function. I can drive and I can still take care of my kids. But over the last few days, I've seen a bigger increase in my symptoms and a bigger decrease in my energy. I told my husband the other day to think of me as a character in a video game with an energy bar over my head. I told him I had about 2 out of 5 bars of energy left, although that number fluctuates greatly during the course of a day. It sure would make my life easier if other people could see my energy bar!
Lymie vs. Healthy Person



I spoke with my doctor on the phone yesterday and the two-weeks-on-antibiotics-and-two-weeks-off plan has been abandoned. I'm back to three weeks on and one week off.  She also put me on a once-a-week dose of Larium in addition to my other antibiotics. That means one day a week, I will take four antibiotics, instead of three! Ay dios mio!

My symptoms are indicative that my Babesia is flaring up again. My night sweats are back; my headaches, leg pain and joint pain are back; etc. Larium is the medicine that caused a stronger Herx in my body than any other medicine, but, ultimately, it is the one that gave me my life back. I was pretty exhausted today, but I was able to push through the pain and fatigue of another medicine. Work your  magic, Larium!

Thursday, June 9, 2011

Falling Down

A few days ago, I was walking downtown and I noticed a man in front of me with a huge limp--most likely a birth defect of some nature. All of a sudden, he fell down. By the time I was able to reach him to help him, he'd already managed to pull himself up off the hard concrete and dust himself off. My heart broke for him when I realized that no one else had offered him any help, or even a second look, for that matter!

I asked him if he was alright. He laughed it off and said he was used to falling down, but he really appreciated me asking. I got the impression that he wasn't used to people showing him much concern when he stumbled.

We talked briefly and we went our separate ways, but I couldn't stop thinking about him. Here was a man who was used to falling down over and over, yet not only did he pick himself back up, but he also managed to see the humor in his situation.

Tonight, I'm thinking about that man once again, as my body is overcome with pain and I can no longer deny that my own body is stumbling once again from Lyme disease. It is not abrupt like an actual fall, but rather, I've been falling in slow motion for a few weeks now. However, I can no longer deny it: I am relapsing.

As I struggle to come to terms with what this means for me and my family, I draw from the strength of the man who fell down and picked himself back up again.



"Fall down seven times, get up eight times."  Japanese proverb.


Tuesday, June 7, 2011

For Renee

I would like to introduce you to Renee. She has been one of the biggest
supporters of my blog. She is always one of the first people to leave
me notes of encouragement. It is always an inspiration to read Renee's blog as
she aspires to find the positive in a negative situation. 

Renee has hit a very rough patch in her Lyme disease journey
and she really needs a lot of support and encouragement.
If you have a moment, please stop by Renee's blog and leave her
a comment. 


"The soul would have no rainbow had the eyes no tears."  ~John Vance Cheney

Love and hugs to you, Renee!
I know you will find a way on your blog to turn
this pain into beauty.

Monday, June 6, 2011

The Symptoms of Lyme Disease

So you think you or a loved one might have Lyme disease?

Here is a list of symptoms of Lyme disease (scroll about half
way down the page to go straight to the list). If you have
20 or more of the symptoms listed, you should seriously consider being
tested for Lyme. But wait, it's not that easy!

Lyme disease is a clinical diagnosis. The tests for Lyme are inaccurate.
A positive test result is positive; however, a negative test means very little.
That is why if you suspect that you might have Lyme disease, it is very important
that you find a doctor who is literate in Lyme disease. Here is a great
place to go to help you find a Lyme literate doctor (aka an LLMD).

There are a few labs that specialize in tick-borne illnesses. Once you
find a Lyme literate doctor, he or she can help you get tested at a specialty
lab. I can't stress how important it is to find an LLMD if you think you
might have Lyme disease!

Good luck, and I hope this information helps!

Thursday, June 2, 2011

Memorial Day Weekend

I went camping over Memorial Day weekend--my first fun trip of any sort since getting sick with Lyme disease. I had a lovely time and I'm glad I went, but I didn't realize until we got there that we were going into a Lyme endemic county. A lot of people with Lyme disease can't relax when they go out into nature anymore for fear of being rebitten (you can get Lyme over and over), but I absolutely refuse to let that happen to me.


That being said, I may have tried to dust off every single speck of dirt on my body to make sure it wasn't actually a tick. I made sure that everybody in my family checked regularly for ticks, and we all ended up in the clear. I am very glad I went camping and the whole family had a really great time. It was so refreshing to be out in nature again! I really don't think I would have gone had I known we were going into an endemic area, so I'm glad I was already there when I found out.


While we were on our trip, I had the pleasure of talking with my friend's mother, who also has Lyme disease. Just like me, she became debilitated in February of 2010. She lives a few hours away from me and she chose to do herbal treatment instead of antibiotics. She is doing so well, that it made me wonder if I'm doing the right thing with antibiotics. If my Lyme can be eradicated--or at the very least held at bay--by herbal remedies, shouldn't I pursue that option? That question has been lingering in my mind.

Tuesday, after we were back from our trip, I started back up on antibiotics. It was only two weeks off, but it was my longest stretch without meds. I didn't want to have to put up with stomach issues (ahem...I'm trying to spare you the details!) while my body readjusted to the medicine (it usually takes two or three days) during a camping trip, plus I was feeling great, so I talked to my doctor and she agreed to let me go the extra week without antibiotics. I tried once before and couldn't do it because all of my symptoms came roaring back with a vengence. I made it through this time around with two weeks off, though my symptoms were starting to come back near the end.

Wednesday, June 1, 2011

You Might Have Lyme Disease If...

You might have Lyme disease if....you put your tea bag in your child's cereal.
Lyme disease + multitasking=fail!