And another one's gone, another one's gone...

Yep, Another one bites the dust! Puzzle piece, that is.

My parents called me the other day to let me know that my dad got his Western blot results back from IgeneX. They faxed them over to me and I interpreted them.

Yes, Virginia, there is a puzzle piece! He is positive for Lyme. And while that is such sad news for me, it is also another clue to my health mystery-history. It looks like I was most likely born with this, just like my kids were.

You see, Lyme disease is sexually transmissible. While there has been a lot of debate over this aspect in the past, more and more studies have shown that yes, it can be transmitted through intercourse. And yes, my mom will still be tested, but we know that after nearly 40 years of marriage to my dad, either she gave it to him or he gave it to her; more than 36 years ago. My guess is that she gave it to him, as he seemed to be in better health then her in my early years... but we Lymies know that it can lay dormant for years without indication, so we will never really know this for sure. It's the whole chicken versus egg debacle all over again! ;)

If you haven't yet seen it, please check out my new pages within the blog. I have added tabs at the top. Please share this blog with everyone you know. Times have gotten very tough, financially speaking. We thank you for your time, friendship, prayers, and support.

Also take a look at our new video on YouTube!

I will be continuing my summer update soon. Just wanted to get this piece of news out to you tonight. And if you pray, please pray for my parents. After years of strange and rare illnesses, they finally have an answer to a huge question that has been looming ever since I found out my life was plagued with Lyme.

The question of Lyme is no longer without answer for them. And it's going to be a long road.

Lots of love,
Lauren

So... Enough About Me, What Do YOU Think of Me?

Well, as promised, another update. This time I get to talk about me. Fun fun... LOL

The summer started out sl...BAM/WHACK/POW! fast. Yeah, we thought it might have a nice, slow introduction. You know, take its time to slowly walk around us, whispering sweet nothings into our ears... introduce itself... "Hi, I'm summer, I like ice cream for a hot midday treat and breezy evening walks by the lake," that sort of thing.

Instead, May (yes, still spring, technically) presented itself with myself hosting a screening of Under Our Skin – if you still haven't seen this documentary on Lyme, it's high time you did! – then another "journey," as my youngest calls it, to the kids' LLND (Lyme Literate Naturopathic Doctor [who's also a nurse practitioner] for those who weren't really sure but felt silly asking), then it was off to help hosting the Wisconsin Lyme Network's annual "Lace Up For Lyme Walk" at the Milwaukee Zoo in – of course – Milwaukee. A few various doctor's appointments and the month of May was well-rounded out.

June hit with a whirlwind as well. My older kiddos finished up the school year, including my Abigator graduating from 5th grade. Terrific ceremony; we especially were filled with pride and joy to hear her name called more than 5 times for different honors and such including peer mediation, which is a terrific honor at this school, and other accolades. I shot how-to videos with a friend, had more doctor appointments, held a support group meeting (every month, actually), and then we were off to Florida!!!

An 8-day vacation for the whole family, including our former exchange daughter from Germany, who came back again this summer for a visit. We went through Tropical Storm Debby for half of this time, so we weren't able to wear me out so much. Probably a good thing!

Here is a short photo journal (so many more pics were taken of course, but you can see the highlights...)

We got to stay at Dinsey's Magic Kingdom until it closed. Watched the castle turn brilliant colors, and then some cool fireworks.

The "kids" on the ferry boat ride home... Yes, Dad was one of the kids at this point.

Rebekah was with me in the wheelchair most of the day, especially at night. She was plum tuckered out.

Me and Hannah over my shoulder. Friends/family forever.

My Lyme babies' first dance in the Atlantic. Quite the windy day! They had a blast.

Here we are, blue at Kennedy Space Center. Sorry for the grainy quality... Low light n all...

We even went up in space! Oh... Wait... This was a presentation. Either that or there's a huge, enormous threat shaped like a man attacking the earth... ;)

Through all this my Lyme treatment was pretty much steady on, status quo. We rented wheelchairs at the parks as I can't do much walking. I guess it's better to have my hubby push me around in a wheelchair than for me to not go! It was still good fun. Especially to be able to give this experience and spend this amazing time with our kids. Even the biggest one from Germany.

I didn't really have any changes in my symptoms... until July.

And we will pick up from here in a day or so.

Thanks for sticking with me folks. Peace, love, and cider mugs!

Ever Eat Big Bird? My Kids Have...

So, it is 11:05 PM and I am laying in bed, not sleeping. Again. I actually fell asleep around 10:45 and then 10 minutes later... BAM. My mind woke up – vibrantly. I remember a few über important things that need to get done tomorrow and this following week, and then it hits me. My blog. I promised an update and my day got so busy that I didn't follow through. So... here I sit, late at night (well, for this household anyway!) and write.

SO last time I wrote was in May. A LOT has happened since then. I will post over the next several days so as not to give you a migraine from a loooong blog post. Who reads the super long ones, anyway? ;)

Okay, let's start with the kids. I had posted last time that pieces of my Lyme life puzzle were falling into place. Well, another one came crashing into its unsolicited spot about two months into my oldest daughter's Lyme treatment. Babesia. After just two months, the Borrelia load had diminished enough to give the Babesia coursing through her veins, literally, enough wiggle room to pop up and say "hello! I'm here and I'm gonna throw a party! When? NOW!"

She was exhibiting classic "Babs" symptoms, and so began the puzzle-piece-fitting and the expensive treatments. She started on Alinia, which I was, and still am, taking, along with the antibiotics to keep the Babs from becoming resistant to the Alinia, and also to combat the high strep load and the Borrelia.

One month later (the two younger girls started treatment a month after my oldest), my other two began showing signs of Babs as well. So yes, for sure, I knew I had contracted it all together. And yes, they too had to address this awful parasite/protozoa as well.

The nice thing is that we reached our out-of-pocket max for prescriptions at the end of August, so now we aren't paying anything for prescriptions. As long as they aren't filled for more than 84 days at a time. I kid you not. Gotta love insurance. Really. You do. Because Mepron – the anti-malarial drug used to treat Babesia that is the #1 choice of LLMDs – costs over $5,000 for a 3-month supply. Multiply that times 3 kids, for at least 9 months treatment, if not a full year. That's $60,000 for ONE. CO-INFECTION. For 3 kids. Forget the Lyme, the Bartonella, the Mycoplasma Pneumoniae and all the pro-biotics and supplements we have to purchase as well. And the LLND visits. Really.

Oh, and Mepron... is yellow. Sorry. not "yellow." It's YELLOW!!!!! This is nothing compared to... well... let me just show you. This is Miriam. She just took her Mepron. We can call this pic "MirPron."

Drum roll please...

So yes, while our insurance is finicky about how many days we can get at once, at least we have it. We are truly blessed. Because as of right now and the rest of the calendar year, we don't have to pay for any meds.

Okay... we traveled A LOT this summer and the kids did terrifically. I am happy to say that we started a new school year with a new middle schooler, a second grader, and a 4K-er and they are all doing so well! Adjusting to changes can sometimes be really quite difficult for kids with Lyme + Co. But so far, this has been a smooth and wonderful transition. I am truly truly blessed. We all are. I couldn't have asked for better kids! Even with a horrid disease in their lives, they are so amazing!!

Not only are we dealing with new schools and great transitions in that respect, I really believe that we are seeing vast improvements in all three of the girls' health. Miriam (the middle one) still seems to have a lot of emotional issues, but they really only come out at home, and she still is excelling in her classes. They all have pains and random issues that Lymies are so familiar with, but they are becoming fewer and farther between.

I thank God for such amazing kids and for their extraordinary LLND. She is in every way, a hero.

More to come... Oh, so much more... For now, on this, the last few minutes of the first day of fall, peace, love, and cider mugs to you all.

Why Do I Do This?

I have abandoned my blogs. Again. Well, I am here. Again. I will be posting an update about my life AND the kids, probably tomorrow.

But I wanted to let you all know that I'm here. Again. It's been a really hard summer, so please forgive me.

See you all tomorrow.

Feel the love...

I'm late! (...as always it seems!)

Missing Pieces – Unsolicited Company

Well, well, well... I've had my first official Lyme flake-out. Ha! It's been more than a month since I've posted. I've had this massive block in my head that hasn't allowed me the ability to get *anything* done in any sort of a timely manner. It's been ridiculous to say the least. I've even begun updating and stopped, only to have it NOT save. Ugh. So here we are; ready and willing and ABLE to update. It's a big one.

The first thing I will mention is that my Lyme Life has grown quite wildly in the last month or so. I would say it is kind of looking like our "garden" at this moment... We haven't done anything yet this season. This is where my amazing veggies grow and thrive every summer. Check it out. Yikes. That's alllll weeds.

So, why is this garden being highlighted for this post? Well, this is what I feel my life has been over the last month or so... And here's why: We had our three girls tested about 5 weeks ago. I got the results the day I was driving, in the rain, and high winds, to my own LLND appointment. My oldest is positive for Lyme and has a high strep titer. My youngest is positive for Lyme. My middle daughter, while the tests showed negative, is the most symptomatic, and therefore we believe her body is either (A) just not making antibodies to the bacteria anymore, or (B) there is so much of a bacterial load that all the antibodies are currently stuck to the pathogens and therefore not floating freely around in her blood to give a positive result.

All three girls. I gave it to them all. I did have quite the time for the rest of my drive – and really, the rest of my day – crying, mourning. But I will tell you that there is one thing I do not feel, nor will I ever feel, and that is guilt. If anyone out there is reading this, thinking how horrible it is to know that you passed a disease on to your child, it isn't your fault. Unless you purposely tried to do it. Most people, myself included, don't even know they are sick when they begin their families.

One thing did come out of this fateful day's conversation: I was able to put another piece of my own puzzle together. I was, in fact, infected with Borrelia Burgdorferi  and Bartonella when I was 7. [Actually, as we find out in a later post, I was born with Lyme, Bartonella and Babesia...] (Although, there are a few loose ends to tie up in this respect as well... More to come on that another time.) I do believe I was re-infected and also contracted Babesia 4 years ago, here in my back yard. I pray this is accurate, as I do NOT wish Babesia on my children, or anyone else.

So, another puzzle piece identified and placed. Awesome. Unsolicited company of my own children... Well, not so awesome. However, I did have this word of encouragement for them, and I will pass it to all of you as well:

Everyone in life has a serious struggle with at least one thing; be it a health problem, financial woes, emotional trauma, relational tiffs, etc. At least in this family we are all on the same page and we all know what the others are going through. Sure, it does look a little different in each individual, but guess what? We are all in this together and can sympathize and empathize a lot better than if we all had different crosses to bear.

Everyone keep the faith, fight the good fight, and when you are at the end of your rope, look up and see Who is holding the rope in place. He is the One and only One who can truly, truly save you.

Lots of love,
Lauren

Ondamed and Ranch Dressing... (What is Ondamed, you say?)

I went to an amazing naturopathic conference a few weekends ago in our state's capital. It was, as I said, amazing. Bet you didn't see that one coming...

I learned SO much about the newest info regarding Lyme and had an Ondamed treatment. Wow. Can we say "Hello Bart!"I got up from my treatment and a friend of mine asked what was all over the backs of my arms. See for yourself... Looks a lot like chicken wire. And it wasn't there before the treatment.

Here's a shot of my legs, nearly 12 hours after the treatment.

They truly don't look that crazy in "normal" circumstances.

So something was working, that's for sure! I am looking forward to beginning this Ondamed. It is a bit expensive, though. I couldn't believe what I heard coming from the nurse's mouth. I told her nothing about my situation.

She knew I had Lyme of course, but she began the treatment and began by saying, "You have cardiac issues?" Yes, I have POTS, and the Lyme and Babs have messed up my heart.

Next up: "Your central nervous system is not very good." Nope, I have Autonomic Dysfunction, which is inside the CNS.

Then: "Your endocrine system is taxed." Yes, I'm in Stage 3 Adrenal Fatigue.

Wait for it.... "Are you experiencing any intestinal discomfort?" Nope... She dials in more specifically. "Oh, it looks like you have maybe some gas bubbles more in the stomach area." Seriously? I am lactose intolerant and had ranch dressing at lunch. The Ondamed knew I cheated with dairy!

Last: "Your Lymphatic system is really bad." Yes, yes it is. Every time I do my foot detox baths, so much sludge that is lymphatic in nature comes out. It was unbelievable.

So, to sum up, Ondamed rocks. Bio-feedback is kind of what is happening. The machine communicates with the body and the body communicates back! I know, sounds weird. Almost like quackery... But guess what? It isn't. I am living proof. How she zeroed in on all of my issues was just amazing. I could not believe how accurate it was. I mean, come on. Ranch dressing? Yep. Ranch dressing.

How We Roll

Today I realized (like I did yesterday, and the day before, and the day before... you get the idea, I am forgetful sometimes...) that I haven't updated in a while. Today's the day!

I thought it would be a good idea to tell (and show) you all why I can't work right now. Today, as I sit on my couch, legs elevated and arms hurting, I realize how truly sick this disease makes me physically. Over the last two days, I have been organizing all of the yarn and craft-type "stuff" that I have accumulated through the years.

It's amazing how much I have inherited from grandparents, found at rummage sales, purchased because I couldn't live without making something with "this awesome chunky yarn" or "that delicious colored yarn in that natural fiber," etc. It adds up. To a lot. It's almost embarrassing to see how much I have while only being in my mid-30s!

Yarn, yarn, yarn... Yes, even in the striped bag.

Anyway, to make this story short(er), I sorted, de-tangled and de-knotted the boxes and boxes of various yarns, so it could go into these great plastic storage drawers that a dear friend had given to me. I also went through 4 boxes of "stuff." You know, the stuff that we placed in the room in the basement when we moved here... more than 4 years ago... The "stuff" that memories are made of...

I almost couldn't get myself up the stairs to bed, because I had been sorting YARN while sitting down all day. It takes both arms and both legs to get me up the stairs; using the hand rail and the opposite wall to help as my legs just won't do it on their own... SO co-dependent with those arms! 

So when I got to the boxes of "stuff," one box was a box of science books. Heavy. So I used my legs to slide it out of the room. And here I sit today, recovering.

I mean, could you imagine me at a job? Where I would have to "do"... anything at all consistently? I'd be fired. So, what do I do to keep myself "alive"? I volunteer for the Wisconsin Lyme Network as Secretary and on the Board of Directors. And this is what it looks like when I have a mid-morning meeting. Notice the three chairs I have lined strategically... Yup.

That's me, listening to my friend who is across the table... And yes, that's decaf and sugar-free coffee!

My meds have this nauseating affect on me. Every day, twice a day, I get like this. For about 1-2 hours at a time. Fun, right? 

Ladies and gents, when you're in the Lyme world, that's just how you roll. 

I know it won't be forever... But until that happens, sporadic moments of organization--as long as it's as light as yarn--and sitting-optional meetings are just what life is.