Behind Closed Doors

Would you voluntarily let a security camera run 24/7 in your home, to record every conversation, glance, sound? There was a time I would have said, “Never!” but recently I’ve been rethinking that. Can you imagine? Oh, there would be the embarrassing moments, the comment you wish you could take back, the dirty look you hope no one saw, but there would also then be the “proof.” Proof that Jenna has a disability, proof that she still deals with Lyme disease on a daily basis, proof that we’re not just exaggerating.
If I were to tell you that every night for the last two weeks I’ve removed door handles, duct taped my front door closed at several different heights, set a door alarm, and piled noisy items in front of it, you probably would think I’m crazy. But, if my camera were to reveal that Jenna’s Lyme psychosis has been flaring and that she has had several episodes of seizure-induced amnesia every night and tried to “escape” from the home she doesn’t recognize, you might then understand that there is a method to my madness. If I were to tell you that the bubbling almost 19 year old who recently earned her district manager title with Arbonne couldn’t read independently most of yesterday you would be skeptical, especially after she made numerous cold calls the same day, but if my camera were to show you one of the “silent” seizures that leave her in a post stroke-like fog for hours you would get it.
My very first blog entry so many months ago was titled “You Don’t Get it Until You Get It,” and I’ll continue to stand by that, but add to it that until you have a child that gets it, you’ll never get it. I could throw statistics and reports and medical records at you for years, but you won’t get it. You’ll never understand that when you see us out and about in public it’s only a snapshot, a brief moment in time. And yes, we do our absolute best to be “normal” when you see us — in fact, Jenna will go over and above to make sure that you have no idea she’s not well. You can bet that she’ll do her best to not let you see the whole body twitches that she holds in while smiling or that she climbs into the backseat of the car so that the child-safe locks protect her when she has a seizure. It’s what goes on behind closed doors that defines our lives on a daily basis and shapes Jenna’s world as she lives through it.


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I am the Bubble Popper

There are days I hate being a realist…Sometimes I wish I could just let go and sail through life believing that no matter what happens, everything will be okay. Being a realist makes it hard to surrender to my faith, which, in turn, makes me feel guilty. Well, more guilty, because the realist also gets to feel guilty about being the one who pops everyone else’s bubbles. I don’t pop bubbles out of meanness or jealousy and definitely not joy. It’s not a job I relish and certainly not one for which I ever applied.

Sometimes the bubbles I get to pop are quite small and are easily forgotten, others are pretty huge and leave messes behind, no matter how careful I try to be. We have a couple pretty large bubbles growing around here right now…Jen may have an opportunity to live in Italy for over a month this summer. Free. She’s also started working as an Arbonne Consultant to raise funds for the foundation she created for kids with invisible disabilities. I’m working really hard to keep these bubbles cushioned, and trying to figure out out to support them so that they eventually get unbreakable shells. I often fear that Jenna is afraid to let bubbles even begin to form. It’s easier than having them popped and feeling disappointment over and over again.

Yesterday I had to choose between lying and popping a bubble…talk about being stuck between a rock and a hard place. Jen wanted me to agree that she’s had a really good week. I wanted to, but I just couldn’t. You see, she has no recollection of the seizures that render her unconscious or cause the amnesia that have her trying to run away from me. Bless her heart, for her, a good week is one that she gets out of the house for a few hours here and there, that her pain level is manageable, that she is able to read/write/comprehend when she wants to, that she is able to talk on the phone and spend time making plans. A “good” week is all relative when you’re only used to having bad weeks.

Is keeping her grounded in reality fair to her? Should I keep reminding her that right now she’s no where close to being independent? I think deep down she knows it, but she wants so much to be done with this episode in her life and is so incredibly hopeful and determined. I am her mom and I want her to be happy and to see a life beyond the Lyme-colored nightmare that has already stolen so much from her. But, I am her mom and I have to look out for her and keep her safe. So what do you do?

Right now, I’m choosing to be the realist and I pray that someday she’ll forgive me for popping her bubbles. That doesn’t mean I won’t help her try to protect and save some bubbles or even try to form some new ones…After all, I am her mom, and realist or not, my most important job is making sure my kids are happy.

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The Learning Curve and the Lymie Fastball

We’ve all heard those age-old riddles…”Which came first, the chicken or the egg?”…”If a tree falls in the woods and no one is there to hear it, does it make a sound?” Well, I have a new one for you: “If we don’t know how to accurately diagnose and treat a disease, how can we say that we truly cured it?” At this point in time, there is not one definitive or even highly accurate test to diagnose Lyme disease — if there were, then, shouldn’t we be able to use that same test to determine if someone is “cured?” But we can’t. There is not even one widely-accepted foolproof protocol that everyone is directed to use. In fact, it would seem that every doctor has their own idea about how to treat Lyme disease. And every patient has their own set of symptoms and problems – that changes, often and unpredictably.

I want a live medical feed hooked up to Jenna. I know that sounds odd,but I just wish there was a way to record all of her ups and downs throughout a day, like they do for stocks on Wall Street. Then at the end of the day we could look at her numbers and definitively say, “You finished the day strong, despite several early setbacks, and you are expected to remain strong through the end of the week,” or “It was a weak day but hopefully a major influx of meds will speed recovery.”

I’ve talked to so many people who are either dealing with Lyme disease themselves or have a loved one who is suffering. I’ve had to learn not to cringe when I hear of some of the treatments and statements made by doctors — and I’ve had to learn to qualify my opinions with , “Well, I’m not a doctor, but…” One friend was told that 30 days of antibiotic would “cure” the Lyme disease and that any symptoms/issues after that were just a part of the healing process. This same friend looked at me cluelessly when I asked if they had tested for co-infections. One friend has a daughter with pretty severe neurological issues and the only antibiotic their insurance will approve for treatment is Doxycycline, which can’t be taken orally in high enough doses to cross the blood-brain barrier to effectively kill the spirochetes now buried in her brain. So they have to resort to treating the effects of the disease: OCD, rages, insomnia, bone-deep fatigue, and more — often with much stronger meds than what would be used to actually treat the disease.

Detoxing is another huge topic of discussion among Lymies and their loved ones…I could just scream when I hear of people, kids especially, on treatment who are truly clueless about herxes and detoxing – not because they can’t learn about them, but because their doctor or nurse never told them what to expect during treatment and how to manage it. I thank God for other Lymies who have shared their experiences and knowledge with us and helped make our journey a little less rough.

Jenna is continuing to hold off on antibiotic treatment for now and is working to boost her immune system and treat herself with supplements, rifing, and reiki. Am I worried? Sure. I don’t want her to backslide. Should everyone do this? Couldn’t tell you; just know that it was tough call for this lady. It’s been an eye opener as well. My med school bound son and his girlfriend were talking last night about some of the “supplements” Jenna is taking; I had to smile (to myself) when they agreed with my analogy of big pharma to snake oil potion sellers of days gone by. When those potions didn’t do the job, what did people do? Head over to grannie’s for a natural poultice. When did we give up all of our authority to treat ourselves to insurance companies and big pharma?! Learn about Lyme!

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It’s not “What’s in Your Wallet?” – It’s What’s in Your Arsenal That Counts

Despite the rain outside my windows this morning, I’m hoping for another “blue sky day.” That’s the term we’ve adopted from our LLMD for those days when Lyme disease isn’t in charge. I’m still a bit afraid to be too hopeful, because I know from experience just how sneaky this terrible disease can be, but I am.

Jen is beginning to have more “blue sky days” and watching her face light up brings me joy. Seeing her make plans (albeit tentative) thrills me. Even having her argue with me and roll her eyes makes me smile. Because it means that even though she has a long long way to go, she’s winning the war.

Her arsenal these days is a bit more eclectic as this disease has forced us to open our minds and hearts to alternative protocols. I know there are some out there reading this who will think we’ve gone to the dark side, but there are many others asking “What took you so long?” I remember when the term detoxing brought to mind expensive spas with celebrity status…no more. There was a time I would have scoffed at therapies like reiki and rifing…no more. There was also a time when I put my full confidence and trust in mainstream medicine…no more (and this is huge considering my son is pre-med!).

I honestly do believe mainstream medicine saved Jenna’s life. And now, “alternative” medicine is giving it back to her, one day at a time. Essential oils, gluten-free natural foods and supplements, green smoothies, reiki, rifing…we’ll try just about anything. Jen was suffering from daily paralyzing vertigo attacks; since rifing – just one time – she has had only one minor episode in nearly two weeks that responded quickly to medication. Coincidence? I’ve watched her literally float off the table after a reiki session and the feeling of “feeling good” buoys her for days. Mind over matter? Could be. I don’t care if it is or not; it’s working and we’re learning.

Of course, the biggest factor in all of this has been faith. Despite being tested, our faith is deeper and stronger than ever. We know God has gotten us this far and that everything that has happened, good and bad, is because it is in his plan for us, a plan that will unfold when He knows we are ready.

Soon my Lyme Warrior Princess will awake from her slumber and within a fairly short amount of time we’ll know what kind of day is in store. Her arsenal is stocked and her troops ready to rally around her. This war has lasted a long time and many battles have been lost, but Jen will win. And, if the dreary rain this morning means her battle plan calls for lots of naps, I’m ready. We’ll just pray for another “blue sky” day tomorrow, because if there’s one thing we’ve learned over and over and over again, it’s that you have to just take life one day at a time.

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Grieving and Green Beans

I canned 10 quarts of tomatoes yesterday and plan on making homemade salsa today. Thursday brings a quick trip to DC and then laundry on Friday, again. If you had asked me what I’d be doing this particular week a couple years ago, I would have told you that it was going to be a very special week…the week our Jenna would leave for college. But that’s not happening, at least not this year, and probably not next.

Jen’s truly happy for all of her friends who are leaving on their first grand “off to college” adventures this week and next. And admittedly, she’s jealous – after all, she’s planned on attending college since she was old enough to understand what it was. I’m jealous, too, of the whole situation that so many just take for granted…the dorm room shopping, the sorting and packing, the heart-to-hearts and lectures about never going out alone at night and learning to live independently. It’s just not fair, but if there’s one thing I’ve learned over the years, it’s that life isn’t fair. And, yes, I’m whining, enough for both of us, because Jen is incommunicado for awhile, not just because it breaks her heart over and over again to keep up with Facebook posts, but because she’s also having a tough time on the new treatment protocol and getting out of bed without falling is an accomplishment.

Even though we’ve known for at least a year that Jen was going to be on a different track, I think this week has been the toughest for both of us. We knew it was coming and tried to prepare for it, but she’s grieving for a lost dream and I don’t have all the answers. So, we’re keeping busy, as best as we can…can…anyone have any extra green beans??

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Every Little Breath She Doesn’t Take

Jenna stopped breathing last night – three times, for several seconds – but I think it was my heart that stopped. It was the second time this week it’s happened. This is just one of the nasty tricks the bacteria entrenched in her brain likes to play, but this was the worst incident so far. Air hunger. Nothing “wrong”–just the brain and the lungs experiencing a short circuit. Uh huh, yeah right. You watch your child’s eyes open in panic when they gasp and find they suddenly can’t breathe and then tell me nothing is wrong.

It’s been nearly a year since I started this blog to chronicle our experience with Lyme disease from a mom’s point of view. I’d love to be able to brag that soooo much has improved, but I’d be lying. Oh, Jenna is getting better, albeit slowly, too slowly for us. It seems like it’s taking a lifetime. Hers. I can’t even begin to imagine how it feels to be 18, unable to get a driver’s license, unable to work, unable to go away to school, and unable to live your life the way you want. And then, on top of that, feeling like she has to prove or apologize that she’s unable to do whatever because the illness she deals with is mostly invisible. I feel the same pressure at times.

As mom, I walk a fine line between trying to reassure Jenna that God just has a different plan and timeline for her and pushing her to stay as active and engaged as her health will allow. It’s tough and I’ve lost my balance on more than one occasion. I’ve also given in and let her push her limits, which means we both pay for it later…her with misery and me with worry. Should I call 911? How many seconds can she not breathe without it causing damage? When she mentions that she has chest pain should I call for an appointment with a cardiologist? What about all the neurological “stuff” that she deals with intermittently and unpredictably? What justifies a call to the doctor?

Talking to other Lymies and Mama Lymies gives me hope. They share their stories and solutions and it gives me reassurance to know that Jen is not alone in her suffering or her treatment path. My faith and my family and friends help me hold it together when it feels like everything is falling apart. This past week I turned down two job offers and started berating myself because I haven’t worked for over a year and the loss of income combined with the cost of treatment is tough to put it lightly. But then I look at Jenna and remember my promise to her that I would help her through this no matter what and I can’t do that if I’m not with her. So, I’ll just keep chugging along, working when it works out for us and being there for Jenna even on the days when it feels like I can’t keep my head above water, like I can’t catch my breath.

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My Unsung Heroes

Amount of time Jenna has received treatment: 14 months
Amount of time Jenna’s health has been affected: Over 5 years
Hours of support given by others: Priceless

When someone you love falls ill, you learn a lot about yourself and others. You can use challenges to strengthen your faith or let it fall by the wayside. You can choose to be grateful or you can choose to avoid dealing with life. I was praying for guidance and in thanksgiving this morning and was reminded of the “unsung heroes” that have supported Jenna and me for so long.

My husband, Chris, has been our foundation. Someone asked me once why he didn’t go to Jenna’s appointments. To put it simply, he works. He works so that we have health insurance, so that I can take care of Jenna, so that we can afford groceries. What many don’t know though, is that he works through excruciating pain…several doctors have told him that he needs a complete hip replacement but that they don’t want to do the procedure for at least another five years. So he deals with the pain the best he can and works for all of us.

If Chris is the foundation, then my son Joe is the stone wall built upon that foundation. It’s not easy being the brother who isn’t sick, but bless his heart, he’s been there every step of the way for all of us. He picks up where Chris or I can’t, takes care of himself, and is always looking out for Jenna and me. “What can I do to help, Mom?” Sometimes that simple phrase brings tears. He’s a good man and he could just as easily have made the choice to pull away, to live his own life the way he wanted, but instead he has chosen to stay close and to help take care of all of us…I’m so proud of him and know that some day a lucky girl is going to realize just how much you can tell about a man by the way he cares for his family.

My mother. I don’t even know where to begin. She supports us in so many ways. Mom has the shoulders we know we can cry on, the ears that hear what we’re not saying, the words to boost us and a heart of gold. She has shared so much of herself and we know that we’d be lost without her. Mom has the power to take the foundation and walls and turn them from a house into a home filled with love and support.

My sisters and their families. Chris’ family. Our community of friends and my Facebook Support group. Jenna’s LLMD and his staff, our local family doctor, and others. Others who have shown kindness and compassion, understanding and acceptance, not just toward Jenna, but towards all of us – because we’re a team fighting to do what needs to be done. Without all of them, I know, in my heart, that we never could have made it this far. So today, just like every day before it, I gave special thanks to God for my unsung heroes because we would be lost without them.

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