Turning Lyme(s) into Lemonade

As I mentioned here, May was Lyme Disease Awareness month. (Phew, guess I’ve been busy being sick! Two months late with this post!!) I am acutely aware of Lyme Disease every day, but prior to my diagnosis, I didn’t know much at all about disease, and many people still don’t. This is one reason why I share so much about my experience with Lyme. Another other reason being that Lyme effects my daily life so much, it doesn’t take long in talking to me before it comes up one way or another – I’m a becoming a professional Debbie Downer in that respect. My personal tendency to drag down perfectly good conversations with dreary medical updates notwithstanding, Lyme Disease is an illness that could really benefit from some awareness raising. Why is that? Because it is largely preventable.

Did you know that children are the highest risk group for Lyme Disease infection? They are. Children, when educated about tick safety, are also excellent reminders to do tick checks! My son is like the Tick Police™ as soon as spring comes. Any time that we’ve been out at the park or playing in the grass, that evening as he gets ready for pajamas he’ll strip down and lift his arms in the air, announcing “TICK CHECK!”

When I noticed how keenly he took to this responsibility, and combined it with the knowledge of how high risk children are for Lyme, the answer seemed clear – start ’em young! Educate his peers, and turn them all into little Lyme-fighting Tick Police Officers! I had this light bulb moment in Spring 2015, and promptly starting putting together a presentation for his pre-K class about tick safety and Lyme prevention.20150325_113410

It went wonderfully! I brought in lime slices for the kids to take the Lyme Challenge, made poster boards to explain the basics of tick safety, and created handouts to be sent home to their parents with more detailed information.FB_IMG_1427315615537

This year, I approached my son’s kindergarten teacher about doing the same. She loved the idea, and I am happy to report that it was once again a success.IMG_20160520_154947

I am even happier to report the wonderful feedback I’ve received from other parents. Each of the times I gave this presentation, a part of me has worried that the kids would be scared. That my fellow parents would be rolling their eyes, saying, “Grrrrrrrreeeeeat, now my kid is scared of every ant and little bug s/he sees! Thanks a lot, Annoying Lyme Mom!!!” But parents in my son’s class reported back to me that their kids were excited to share “important” information with their parents. The parents thanked me for educating them, for pushing the bug spray, and empowering the kids with prevention tools they needed.

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I understand that we all can suffer from awareness fatigue with so many various causes popping up in our social media these days, but it all starts from a good place. People who are touched by an illness or issue, wanting to help others understand what they are going through, or prevent going through it themselves.

Making lemonade.

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Limeade?

Limeaid?

Lymonade?

You get it.

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The world keeps turning

My boost in energy and reduced symptoms lasted for a few glorious days after my infusion! I started to slow down yesterday afternoon, and by this morning I was fully in crash mode. All day I have been mentally and physically exhausted. Everything aches, the neuropathy in my right limbs is nearing unbearable, and my face is drooping. I felt like I was walking through jello all morning until I got home from camp drop off and took a mega-nap. My right arm and leg are bothering me so much, it was hard to drive, and at dinner, I struggled to hold my fork. As I type this, my fingers are feeling cold inside.

The difference between me on Sunday, and me today is astounding. But more on that another time.

Today, I’m here to say that my son is having surgery tomorrow. Several weeks ago, we discovered that he has a hernia. It only protruded a couple of times, causing him pain, and then went back into place on its own, and hasn’t bothered him since. But a hernia it is, and the only way to repair a hernia is through surgery. Two years ago, he had his tonsils out, so we have some idea of what to expect. Putting your child under anesthesia is terrifying. We are fortunate the both the last time we did it, and this one, it is not an emergency situation, and is for a very routine procedure. However, it’s still scary. It is hard to send your child to an operating room. It is hard to wait in the waiting room, watching the minutes tick by. It is hard to see them in pain afterwards.

All of that stuff is hard when for a parent who is healthy. Tomorrow, I’m about to experience it in the midst of a “bad” stretch of Lyme life. Can’t say I’m looking forward to it. I know I’ll get through it on fumes, adrenaline, and Mama Bear strength. I know I’ll be more worried about him than me.

Life doesn’t stop for Lyme, that’s for sure.

Sad Bunny

The other day, my son found a red pen and decided to draw some pictures. He was busy for a while, making all kinds of doodles, and then called me over to see one he made for me:

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“I love it!” I said. He asked if I knew what it was. I guessed, “Maybe a duck?” “Nope,” he said, “It’s a sad bunny.” “Oh, why is it sad?” I asked. His answer was barely a whisper, so I asked him to repeat – “Lyme Disease.” I felt a lump in my throat.

“The bunny is sad because it has Lyme Disease?” I asked. He nodded seriously and said, “It’s you. You’re resting in bed.” I tried to hide how sad I felt in that moment. I told him, “Sometimes I’m sad that I have Lyme Disease too, but I try to remember that I will get better.” He was silent.

Thinking quickly, I suggested he draw a second picture – of me, happy, when I get better. He liked this idea, and grabbed a quarter that was beside him on the table to trace a circle for my head. He seemed happy with the finished product, but not entirely convinced. So I suggested we write something on the picture to remind us that Mommy WILL get better. He is starting to write a lot and do some spelling recently, so I knew even though he couldn’t read the words, he would understand. And he did.

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When we left the pictures on the table to go do something else, we were sure to leave the happy one on top, as a reminder. But the fact is, there are still days when I am that sad bunny. He knows that. I have no answer for him as to when the happy Mommy in the second picture will be here to stay.

No parent wants their child to see them as a sad bunny. I love that little dude more than anything, and I hate for him to be sad about me being sick.

There’s no moral of the story here. No neat bow to tie this package up in. Just a crappy moment from the trenches of Lyme.

 

The Hardest Part

Friday was a tough day. Saturday was better. Sunday was okay. Monday, yesterday, was pretty good! Today was another tough one. In the brightness of yesterday, I set high hopes for today. They included doing some laundry and running an errand. Yes, those are high hopes. Too high, evidently. Maybe it is an adjustment to my new meds protocol (more on that soon), but I felt terrible for most of the day. Once I managed to get my son off to school, I was pretty useless. Which brings me to the hardest part, for me, of living with Lyme: being a mom at the same time.

I remember a distinct moment, sometime in late fall, when I told my son “I can’t right now, I feel really sick today,” and I realized that I had been telling him that a lot…for a long time. It hit me like a ton of bricks. “I can’t,” wasn’t something I had ever imagined saying to my child so frequently. I felt like I was letting him down, and it was a horrible feeling.

There have been days when I’m not sure who has it worse – me or him. Before mid-September, when I first got really sick, we would play outside almost daily, regardless of weather. My little guy is very active and athletic, and we did a lot of running and jumping. Roughhousing, living room dance parties, and Catch Me If You Can were regular staples. When I got sick, that all came to an abrupt halt.

Sometimes I can tell that he is angry or sad. Seven months is a long time to a nearly five-year-old. Sure, I have some good days when we can do normal things, and some things we can do together even on my worst days. But I hate not being able to be the mom I want to be – that I used to be – all the time.

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Silly selfies – a fun activity even when laying down

I talk to him about it. I try to help him acknowledge his feelings about my being sick. I try to validate them by letting him know that sometimes I feel sad or angry about being sick too. I bought him a storybook about having a mom who’s sick. He knows that I have Lyme Disease, and occasionally, he likes to check in and ask if I still do. He knows about the medicine I take, and I remind him how I’m working hard to get better. On days when I feel well, we don’t talk about it at all – we have fun and enjoy.

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A quiet morning at the library

We have gotten creative. My little athlete and I often play catch sitting down. Or I’ll challenge him with activities – see how fast he can run from here to there and back, dictate a certain number or style of jumps for him to do on his little trampoline, or play DJ for a freeze dance. Luckily, he has recently started to enjoy drawing and coloring more, along with card or board games. Of course there are always book to read, but on bad headache days, I can’t even do that, which leaves us with tv/movies.

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Introducing him to one of my childhood faves

I am a person who tends to have trouble taking care of herself, but the motivation of being well for my son helps push me. I sometimes feel guilt about the amount of time he spends at preschool, but I know I need that time to rest in order to have any hope of enough energy and wherewithal to care for him during the time that he is home. It is hard to be sick for months. It has hard to feel like I’m disappointing my child, who I love more anything. But I have limitations right now, and I have to respect them. Hopefully, one day these limitations will be just a memory, but until then, all I can do is my best – and be grateful every day to be mother to this delicious snuggle bug.

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