I’m a visual learner, so I love videos like this. It’s a great way to explain this complex, chronic disease.
Lyme. Autism. Alzheimer. The three conditions that affect my daily life. Each one unique in their own way. Yet, I couldn’t help but notice that I found myself using similar techniques to calm my sick mother, that I used when my boys were younger. It was only a few years ago that she was asking me for the name of the neurologist that diagnosed the boys, because she feared something was wrong with her brain. She was 56 years old.
Fast forward seven years, my boys are high functioning, in mainstream classrooms, and playing little league football. My mom is in the late stages of Alzheimer’s confined to a wheelchair, living in a rehab center. My dad told me about a Facebook post he had seen recently. Someone asked how a merciful God would allow people to suffer from such an awful disease as Alzheimer’s. The response was, “It’s not about my mom. It’s about what I have to learn from this trial.” After he shared that with me, I went to my bible and I found this verse – which just so happened to be already underlined, with an asterisk next to it:
James 1:12 “Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.”
Every experience I’ve had prepares me for the next chapter in my life. Autism forced me to become an advocate for my boys; which prepared me to be an advocate for myself with Lyme. The lessons I’ve learned from each of those prepared me to accept and work through the Alzheimer’s with my mom. Early-onset familial Alzheimer disease (eFAD) is an autosomal-dominant genetic disease. This means that in each family it is caused by a mutation in a single gene, and that a single copy of the mutant gene, inherited from one parent, will cause the disease. I can’t say I’m not nervous about the future . . . but what I do know is that my book has already been written. I wouldn’t have necessarily volunteered for the Autism and Lyme chapter, I probably would have skimmed right past those chapters, but they have brought me where I am today – which is closer to the Lord than ever. And that I wouldn’t change for the world. It’s with those trials that I had nowhere else to turn except to God.
With a strong, caring husband by my side and a God-fearing doctor to guide us every step of the way, I know I’m in good hands while I’m here on earth. But as the verse says, ‘that person will receive the crown of life that the Lord has promised to those who love him,” so I know that one day my Lyme-filled body will be replaced by a glorified body in heaven. So, whether you suffer from a broken heart or a clinical disease, put your trust in the Great Physician and you can’t go wrong.
PS – Last month, my doctor invited me to join her on her radio program to share my Lyme story. Click here to listen to the recording on August 20th.
It’s a Friday night. I just left the hair salon and instead of going out to dinner with the hubby, or hanging out with friends, showing off my new do, I’m on the couch, in the dark. The dimmed light of the laptop is the only light I can tolerate (which honestly is still too bright for me). Unless you have Lyme or some other auto-immune disease that runs a muck on your body, you don’t understand the intense pain that a simple trip to the hair salon can cause. I LOVE getting my hair done . . . the pampering, having someone else wash your hair and massage your scalp, the blowdrying . . . so relaxing (at least it used to be). Tonight, I cringed with every foil that was gently placed and folded near my ear. The crinkling of the foil was like cymbals crashing against my head. As I type my wrists ache from the position of my hands on the keyboard. My back aches from sitting in the salon chair. I don’t write these things to complain. I write them to educate people on the on-going fight so many of us face with Lyme Disease.
I don’t look sick, do I?
But my body is screaming right now. Everything affects my physical condition. What I eat, what I drink, how much sleep I get, how stressful my day is, if there is a change in the weather . . . everything. But as I’m typing this, a message pops up on my phone. The subject line of the email is “The Good News is still good.” What a timely reminder. Yes, Lyme Disease sucks . . . . but God is still good.
I had to take a break from writing tonight because the light from the laptop became too intense. So, I listened to Dr. Molly’s latest radio show. To my surprise, she mentioned my case. She talked about how Lyme Disease is a journey and a rough one at that. I have to remind myself of that. I have so many good days (which is a wonderful thing!) that sometimes these not-so-good days really knock me down, mentally and physically. But all I have to do is listen to her and remember how far I’ve come and thank God for my amazing support system, a husband who picks up my slack even when he’s down and out.
So, here’s to hoping for a date night out with the hubby after my next trip to the salon! But even if that’s not what God has planned for me, a quiet night at home snuggling on the couch doesn’t sound so bad either.
If your life isn’t turning out quite how you planned, just know that it may not be what you had in mind, but Jeremiah 29:11 tells us that it IS what God has planned . . .
And if that plan includes any sort of health issue, and you’re in the Philadelphia/South Jersey area – you really should consider scheduling a complimentary consultation with Dr. Molly. Take a few minutes, listen to this show . . . you might be surprised that there are Godly physicians, who actually advocate for you and help fight your condition with God’s ingredients. Check it out!
I know that I’ve shopped around quite a bit to find the right doctor for me and I’m sure most of us “patients” do. But what about your doctor? Who do you think they go to when they’re sick? Do they self-medicate? Or maybe they actually reach out to someone else for advice and/or treatment.
I never realized how many doctors my doctor treated until recently. Dr. Molly was on WPG 104.1’s Health Watch recently and many doctors that come to her for their treatment called into the show to talk about their health journey at Cherry Hill Hydration Center. It was quite impressive. I knew I trusted Dr. Molly with my life and my Lyme journey, but I had no idea how many health professionals put their health in her hands as well.
Here’s a recording of the show:
The title of this blog represents three conditions that directly impact my life. I typically focus on Lyme, because that’s the newest of the three and typically has the biggest impact on my daily life. Recently, the third has taken over. Ironically, while we were busy taking our boys from specialists to specialist, to get their Autism diagnosis, my mom started to inquire about the neurologist we were seeing. Apparently, she was having some issues of her own. It took almost two years, but after dozens of tests and numerous doctor’s appointments, my mom was diagnosed with Early Onset Alzheimers. Almost five years later, she’s well into the final stages of this dreadul disease. Did I mention, she’s only 62?
Whenever I would tell anyone about my mom’s diagnosis, I would get this sad – yet horrific look . . . . like, “you poor soul, you have no idea what you’re in for.” Kind of like someone who truly understands Lyme Disease. My biggest fear with Alzheimer’s was that my mom wouldn’t remember me. I intentionally did not research this disease. I did not want to obsess and worry myself to death. I knew there was nothing we could do, so I just accepted it. I knew her brain was deteriorating, but I assumed it was just her memory. I had no idea what we were in for.
The stories of her behavior sound more like someone suffering from Schizophrenia than Alzheimer’s. And what my father endures on a daily basis . . . . no one should ever have to live with. With my mom’s situation, like most of my battles, I have an almost eerie peace. It reminds me of the song, “I Will Rise” by Chris Tomlin.
Though my heart and flesh may fail
There’s an anchor for my soul
I can say “It is well”
Last night, I was cuddled up, under my blanket, with my head on the arm of the couch in Lyme Flare-Up mode, feeling sorry for myself. I’d spent the last few hours, freezing my butt off at the kids’ Flag Football game. As I sat there, I focused on the pain radiating up and down my body and started to sulk. I flipped through the TV channels and landed on Little Big Shots, where 12-year-old Sparsh Shah very quickly put me in my place. Sparsh is an amazing young man, who was born with Osteogenesis Imperfecta. (He was born with more than 30 broken bones.) He tells Harvey he’s had more than 125 bone fractures throughout his life, “I have a fracture right now,” he says. When Harvey asks “Then why are you here?” Sparsh says loudly and proudly, “I want to inspire the world.”
Wow, this 12-year-old blew me away. “Why waste your life in sadness, when you can enjoy a life of happiness,” he says when Steve Harvey asked him how he was doing. Really? This child is wheelchair bound, suffering from a debilitating disease and he can have that kind of attitude? Didn’t I feel ashamed?! Here I am throwing myself a pity party because I’m having a Lyme flare-up and my body is achy from watching my healthy, happy kids play sports. Whoa is me.
This past week, I’ve spoken with two different women that are just now starting their own Lyme journey (technically one has been suffering for years, but is now ready to take the bull by the horns and become her own advocate). As I listened to these stories, it reminded me of how far I have come. Yes, Lyme is still and probably always will be a part of my life. But it doesn’t have the same control over my life that it used to. I’m once again, a contributing part of my family. Just today, I’ve done three loads of laundry and cooked dinner – that’s quite an accomplishment for the old-Lisa. I’m still trying to walk that fine line between being productive and active, without over-doing it. Sometimes I’m more successful than others…. but it’s a work in progress.
I find myself looking up all of the local 5K races and actually consider signing up for one, but typically I chicken out at the last minute when it comes time to click the SUBMIT button. I fear that when I finally do sign up for one, I’ll wind up having a Lyme flare up on race day and end up being stuck in bed, instead of crossing the finish line. But I’m close. I’m considering it. Three years ago, I couldn’t say that.
But what would Sparsh say? I don’t think that boy has a fearful bone in his body. And if he did, it’s probably broken and he’s ignoring it 🙂 So, maybe it’s time for all of us to step out of our comfort zone and take that leap of faith. Sign up for that race, without fear of the being able to finish. Stop letting life pass us by, while we watch others live.
Maybe I really was born for a time such as this . . . as my favorite bible verse quotes. In Mark 4:40 Jesus says one word – SILENCE. And the stormy sea calms and the whirling wind stops. He asks the disciples, “Why are you so afraid? He asked. “Do you still have no faith?”
I say I have faith . . . . but do I really? The key is to step out of the boat, just like Peter did, but not make the same mistake he did – not take our eyes off Jesus. If we all stay focused on HIM, we can accomplish any task, no matter how big or small. So, what’s stopping you? I dare you to be like Sparsh . . . find joy in your current situation and go out and inspire the world!
Tuesday nights are Read to the Dogs at our local library. This program improves children’s reading and communication skills by employing a powerful method: reading to a dog. But not just any dog. These are registered therapy animals who volunteer with their handler as a team, going to schools, libraries, and many other settings. However, Tuesday night is also one of my late nights at work, so there are many times that I’ve promised to bring the kids to this program, but due to my ongoing bout with Lyme Disease, I often have to cancel.
My daily work commute ranges anywhere from 30 – 60 minutes depending on the day. Traffic, weather, construction, time of day – they all play a factor in how long it takes me to get home. Lately the sun has been another issue. One of my lingering Lyme symptoms is my extreme sensitivity to light and sound. Some days it’s worse than others. Most days I function relatively normally (ha ha – my days are far from normal) and other days this sensitivity stops me in my tracks.
Most recently the drive home seems to trigger this symptom, which can lead into a full-fledge migraine. Some days just the way the sunlight hits the dashboard, or reflects off something in my car it can begin. At night, it’s the glare of the oncoming headlights. It starts out as a dull pain in the back of my head, that slowly radiates to the front. Then ZING. Something happens. It’s like my body screams, “Enough! I’ve reached my limit!” and I get a sharp pain in the side of my head. This is when I know the migraine is inevitable. Usually by now, I’ve got my huge, old lady granny sunglasses on, a hat pulled down over my eyes, the sun visors pulled down as far as they will go, and I’m holding one hand up blocking the sun from my line of vision, with the other hand on the steering wheel …. all while navigating through rush hour traffic. I’ve actually considered getting a note from my doctor saying I can’t drive at night anymore…. but then I realized that it happens during the day too.
By the time I’ve reached this point of the sensitivity, I can pretty much assume that I’ll be spending the rest of my night in bed. My husband does a great job keeping the kids quiet and the house dark. He even brings my dinner (which he cooks!) to me in bed. So, on this particular night instead of reading the dogs, my kids tucked me in and kissed me good night, while I fought to hold back my tears.
This past week was pretty brutal. After a full week of intense migraines, my week ended with the arrival of my period . . . . another trigger for a full blown out Lyme flare up. Althought, we may not have control over our menstrual cycle, we do have control over what we put into our body. Limiting my sugar is one of the smartest things I can do no matter what time of the month it is. I’ve also started taking Melatonin. My amazing doctor, Dr. Molly suggested I try it for ten days. I take one pill about an hour before bed, or at the first signs of a headache and to my surprise, I haven’t had a single migraine since I started this regiment.
One of my favorite bible verses is Matthew 5:16 | Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven. . . .
I pray every day and ask God to help me be the light in this very dark world of ours. So, I find it ironic that light is what causes so much of my physical pain. But the bible also says in John 16:33 that in this world we will have tribulation and that we should be of good cheer because HE overcame the world.
But what he says right before that is what’s really important . . . . “in Me you may have peace.” Although most days I find myself doing everything humanly possible to hide from the bright lights of this world, I have a sense of peace knowing that it’s all part of HIS plan for my life and when my suffering has come to an end, the biggest, brightest, most magnificent light that I could ever imagine will welcome me into HIS kingdom, where I will never have to hide from the light again.
My prayer for you is that whatever trial or tribulation you’re going through right now, you find the peace that only HE can bring. No matter how DARK things may seem. HE is the light of the world and HE loves you. And no matter what kind of disguise you put on, you can’t hide from HIS love.