Lori's Life as a Lyme Mom Blog

Those of you who know me well, know that I hate confrontation.  I avoid it like the plague and would much rather compromise and walk away with everyone even just a little bit happy.  I know that on some level, confrontation is probably a good thing, but hey, who needs the stress?!  Definitely not me, I have more than enough stress for ten people right now!

Controversy is another uncomfortable forum for me, but recently I’ve found myself drowning in it.  I guess I’m not alone because there have to be hundreds of other Lymies and their families out there, publicly telling their stories and sharing information right along with me. 

Why do we share information about Lyme Disease?  It’s certainly not for the money.  For me, it’s because I am frustrated that more hasn’t been done to educate people, including doctors, about this very misunderstood disease.   I don’t tell people Jenna’s story for pity or for vengeance or because she is suffering more than any other Lyme patient.  I don’t give out my opinions because I think I’m qualified to be a doctor — that would make me as guilty as the insurance companies who play doctor when they decide they won’t pay for treatment because their very well paid staff doctor doesn’t think a treatment is necessary.  In fact, the opinions I give are always supported by published protocols and articles of experienced Lyme Literate Medical Doctors.

Regardless of how many hand slaps I get (the most recent from a respected physician who shall remain nameless), I won’t, however, stop telling people to be proactive in their efforts to treat or avoid Lyme disease.  I was recently told of an infant who was taken to the ER to have an embedded tick removed and the doc told them that they shouldn’t be concerned because the tick was not engorged.  The mother asked my opinion and yes, I did heartily recommend insisting on some antibiotics.  The family lives in the #1 state for reported Lyme cases, for goodness sake!  I applaud her for questioning if enough had been done!! 

If someone steps on a nail, would the doc not make sure they had a current tetanus immunization to avoid possible infection?  If you go to the doctor for a sore throat or a spider bite or for a burn, you usually walk out with ten days of antibiotics…just in case. Why is a tick bite so different?  You cannot tell by looking at a tick whether it carries Lyme or Bartonella or Babesia–why wouldn’t you treat it…just in case.  There are differing opinions on how long to treat Lyme with antibiotics.  Me, I’d rather give my child a month of antibiotics to start rather than risk many more months down the road if an infection surfaces.  Lyme is not like any other bacterial infection and it can’t be treated the same way — anyone who has read anything credible about Lyme disease knows this.

So, I guess I’ll start adding small print to any opinions I share…This advice is not provided by a licensed medical professional and is intended for use only by people who care enough about the health of others to research and question diagnoses given by same.

I have many titles, most earned, some given, some liked, others not. The title I fight hard to avoid is “helicopter parent.” Like many, I enjoy reading about trends in society and know all the generation nomenclature…Baby Boomers, Generation X and the Millennials…as well as many of the traits associated with each group. I am a late Boomer but not really a GenX’er, my kids are Millennials but I hope that along the way they’ve also picked up some Boomer values and GenX’er independence.

Apparently, we parents of Millennials have also acquired a reputation of being a “helicopter parents.”  You all know at least one of these folks and we’re all probably guilty of “helping” just a bit too much at times. I think it’s just natural for parents to want their kids to do well. Knowing how important schooling is and how competitive the college and job market can be, it’s especially hard for parents to back off and let their kids learn from the “School of Hard Knocks.” It’s easier just to finish up that assignment for them or to even to bypass the student and go directly to the teacher for an extension, because you were away at a business meeting and didn’t know about the assignment far enough in advance.

I remember a few helicopter parents from my teaching days…the 5^th grade parent who escorted their child to class and proceeded to help them unpack their backpack every day for the first month of school …the second grade parent who offered to come in and sit by her child all day so that he could stay on task and she could record his homework assignments for him so he wouldn‘t forget…the parent who was upset about a grade and responded, “but we worked so hard on it.” I’ve heard stories about the parents who take their young adults to college and then insist on attending every orientation and scheduling session with them to “make sure they do it right.”  Luckily, Joe shot down my wings pretty early and I’m thrilled to know that he is confident in handling his own affairs. It means I’ve done my job.  Until a couple years ago, Jenna would never let me even think about hovering…she didn’t even want me to walk her into kindergarten the first day.

Lately I’ve noticed that a couple of the docs/nurses Jenna sees look directly at her and ask her questions. Hello?! Listen up…first of all, she’s a minor and I’m her parent and paying your bill. My responses do count.  Second, and more importantly, you know Jenna has cognitive and memory issues — even if she does answer you without looking at me first, you can’t trust that what she tells you is correct. Last night she couldn’t remember her name and today you want her to list her medications or tell you how a certain medication made her feel and when?!  You want to know how long her narcolepsy episodes last? She’s asleep – how would she know?!

You can say Borrelia burgdorferi, Bartonella, Babesiosis, and Ehrlichiosis all in the same breath, correctly, and you actually understand what the words mean.

All the pharmacists within a ten mile radius recognize your voice when you call and they have your phone number memorized.

Your medicine shelf has grown into a large medicine cupboard and you still don’t have enough room for everything.

You honestly believe that Gluten is really a four letter word.

You’ve noticed your wardrobe is beginning to take on the hue of an electrified leprechaun.

You don’t even think twice about putting your child in a steaming bath of Epsom salts and hydrogen peroxide at 3 in the morning.

You’ve given docs in the ER a lesson on how to handle a herx.

The one word phrase, “Mom…” can stop you in your tracks.

You cheer for doctors you’ve never met because they’re willing to aggressively treat Lyme disease.

People stop you in public and ask for medical advice…Please remember that I am not a doctor…I just sound like one because I’ve had to do a lot of research to understand what’s going on…I’m happy to share what we’re doing but need you to understand that every case of Lyme is different and what works for us may not work for you or your kids or your neighbor or your even your dog.

You chuckle when someone whines about having to take a couple pills because you’ve counted out over 40 pills to give your child – at one time – on top of the IV’s and shots and the yellow goo they could use to paint roads (a.k.a. Mepron).

Deep down you believe that herxing is good, even though you hate watching your kids suffer.

No one will ever convince you that Lyme disease isn’t a big deal because for you, it’s become your life.

I confess…I am a gluten-aholic. I love bread and pasta, in just about any way, shape or form. I crave anything that you can buy in a bakery and I swear the smell of a fresh warm cinnamon bun would be a knock-out perfume. I can still remember the day I finally perfected my great-grandmother’s sugar cookie recipe and have intentionally not shared her recipe with anyone outside the family (at least, not exactly.)

When Jenna was diagnosed with Type 1 diabetes several years ago, we cut way back on sweets to make it easier for her. She was never really big on desserts anyway, so it wasn’t a huge deal. I could still bake for special occasions (like holidays, birthdays, rainy days, days that ended with a “Y“) and could always count on a pb & j if I needed a quick fix.

Then we were given one more reason to hate Lyme disease.

We pretty much knew what to expect when we had our first LLMD visit — a picc line and strong antibiotics, lots of them. We weren’t even surprised when they also prescribed a full range of probiotics and vitamins. It wasn’t until they told us that Jenna had to go gluten-free that the room began to spin. No more bread, no more pasta, no more cakes or cookies…life as I loved it had ceased to exist.

Still in shock, we stopped at Martin’s on the way home and stocked up on anything labeled “gluten-free.” We soon found out that most of the goodies we bought should also have been labeled “flavor-free” and with the average price of a loaf of bread at $5, would have been better off investing in a small country.

One thing I really hate to do is back down from a challenge. I started researching substitutes for gluten and reading labels in search of the “otherwise known as gluten” ingredients. I pulled out my trusty Fanny Farmer cookbook and started looking for recipes that didn’t use large amounts of flour or ingredients that I could only order from who knows where for the price of a week of groceries.

Rice flour is our new best friend. We love rice flour – with a touch of xanthum gum. It can be substituted measure for measure in cobblers, crisps, and cookies like snickerdoodles and peanut butter crinkles. I have come to enjoy experimenting with different recipes to see if you can really tell it’s gluten-free.

For Jenna, giving up desserts was one thing, but taking away her pasta was quite another. We’ve tried just about all of the gluten-free brands and have found a couple varieties that are pretty good. We love Chex — especially since they are now making cinnamon and honey-nut flavors. Glutino pretzels and cheddar crackers are now staples in our pantry.  Ore-Ida french fries and Hamburger Helper’s new gluten-free varieties have been manna from Heaven on busy days. Not being able to grab a quick frozen dinner or run through the drive-thru have encouraged us to cook more with whole foods and to experiment with different cooking methods. 

I do have to commend Jenna for her determination to follow the doctor’s instructions. She has SO much more will power than I do. While I try to eat gluten-free with her as much as I can, I also freely admit that I cheat a lot more often than she does. I feel guilty about it, especially when Jenna catches me and I get the raised eyebrows (wonder where she learned that?!). I just recently read that it takes 30 days to make or break a habit; I guess since today is September 1^st it’s as good a day as any to try to go completely gluten-free again. Maybe if I work at it, I can reincarnate Grandma’s sugar cookies.