perseverance in trials

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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.

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The Forgotten Word in the Blog

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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.

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say “It is well” 
I wish I could say that for the rest of my family . . .  especially my father. He’s not saved. I’m not sure he even believes that there is a God. He struggles to get through every minute of every day. His hope is still in this world. I’ve been there before. It’s an empty, lonely place.
However, what I do know is that most of us need to hit our own personal rock bottom before we will surrender and finally look up. So, as much as it breaks my heart to see him so broken, I know it’s just a matter of time before he finally reaches out to the only one who can truly help him.
My prayer tonight is for anyone reading this who may be in a similar situation. You’ve turned to drugs, alcohol, shopping – anything to distract you and give you temporary relief from your real pain and sorrow. I’ll never forget what our Pastor told my husband once . . . . he said, “Everyone in your life will let you down at one point. Your spouse, your children, your parents – your best friend. The only one who is always there for you is Jesus,”  That always stuck with me – and it’s so true. Life is one big disappointment after another. I’m not trying to be a downer, but none of us are perfect – except Jesus. Therefore, no one can ever live up to your expectations. Once you accept that (and accept Jesus) life and all of the battles you endure are so much easier . . . hence the peace within my soul.
So, if you’re struggling tonight, instead of reaching for a bottle or any other escape mechanism, reach up for your loving father. The one who gave everything for you. HE will be there for you when no one else will. And HE will provide the everlasting love and hope that you will never find anywhere else.

Alert: You can’t do this alone.

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This post is not about Lyme. It’s not even about Autism or Alzheimer. It’s about life. And how you can’t “do” life alone. No matter who you are. At some point in your life, you will reach your breaking point. Life as you know it will come crashing down right before your very eyes.  And there will be nothing you can do about it. You will be helpless.

Some of you reading this are there right now. You are in the midst of the most unimaginable trials of your entire life. If that’s you, I pray for you. I pray that you realize sooner (rather than later) you can’t do this alone. That you’re not supposed to do it alone.

Five years ago, I thought I could do it on my own. I was wrong. Dead wrong. My husband and I had four young children, a wonderful marriage, a white picket fence, the whole nine yards. But what people didn’t realize was that I was crumbling on the inside. I had taken on WAY too much and was afraid to admit it to anyone – especially my husband. I had promised him that I could handle everything on the home-front, while he went off to live the American dream.

We had just taken over a small business, we were both working full time and two of our boys were just diagnosed with Autism. Life was a bit hectic, but I promised him that I had it all under control. I wanted this to work. I wanted the business. I wanted us to be successful.  And the last thing I wanted to do was admit that I was wrong. After all, I was super-mom . . .  I had this.

Yet, the funny thing about life is that, you can only pretend for so long. You can escape temporarily through drugs, alcohol or even a double life, but eventually your cover gets blown. And then what?

Fight or flight. I chose flight. I was too weak to fight my battles – let alone fight my entire war.  So I ran. I ran away from my reality as often and as far away as I could. But eventually reality caught up with me and the shell of the woman that I had become, came crumbling down. Pieces of me would be found in the bottle of wine I just drank, or curled up in fetal position, behind my locked bedroom doors, hyperventilating – physically and mentally incapable of “doing” life anymore – or even pretending to do life.

My husband, doctors, therapists, babysitters, prescription drugs . . . they all helped. It took a village. But as we pulled ourselves up out of the pit that had become our life, it became very clear that doing things our way had gotten us no where. But once we found a church that we could call home; once we realized how wrong our priorities were; our entire lives started to fall into place. Everything became very clear.

God is the answer. He always has been and he always will be. He is the answer to whatever problem you are facing. Take it from me, there is nothing too big for God. I beg you tonight, please call out to HIM. He is there just waiting for you. He can take away all of your burdens. You just have to ask. Invite him into your life. I promise you will never regret it.

It’s time. Don’t make HIM wait any longer.

“The LORD waits for you to come to him so he can show you his love and compassion. For the LORD is a faithful God. Blessed are those who wait for him to help them” (Isaiah 30:18).

Lyme is no opponent for Wonder Woman and her force field!

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It’s been quite some time since I last posted. I’ve been struggling with what to say and trying to tie it into some sort of biblical life lesson, when all I wanted to do was just live my life. Every time I thought about writing, I felt like time was better spend with the kids or hubby or working. But I feel like it’s my calling to write and I know that Lyme, Autism and Alzheimers are issues that millions of people face everyday and I need to continue to share my journey, whether good, bad, inspirational or even boring!

So, the reason I chose today to start writing again is because I started a new Lyme treatment this morning. I’ve been off my meds for a week (trying to give my liver a break – normal ALT levels range from 7 to 55 units per liter – mine was 107). Needless to say, taking antibiotics for over a year tends to take a toll on your body. It was a beautiful thing not having to chug over 20 pills every morning while getting the kids off to school.

Unfortunately, break time is over. I didn’t have to take nearly as many pills as I was used to taking – but I did have to take three antibiotics at once. This petrifies me. The last time we tried this, I landed in bed with intense migraines and excruciating pain from head to toe. We gave up and cut back to two antibiotics.

One of the reasons Lyme is so difficult to treat is because the bacteria and their co-infections have the ability to hide under a gooey sticky covering called a biofilm. When you think you’ve killed them all off, you find out they were just hiding out in this biofilm long enough for you to think they’re dead and gone, then they re-emerge and re-infect you all over again. It’s a vicious cycle.  Most medications and herbs have a difficult time penetrating this shield, which is why Lyme is so incredibly difficult to treat. My doctor’s plan this time is to use this triple threat of antibiotics to get through the Lyme force field.

I’ve been doing much better these past few months. So, I was actually thinking that at my last doctor visit he would tell me to stop all meds, continue the vitamins & supplements and basically suck it up – because this is as good as it gets. But to my surprise he’s going full speed ahead. Maybe this will be the one? Maybe this triplet threat will actually kill the lyme once and for all?

Maybe. . . . maybe not. But either way I keep chugging along. As we finish up our taxes, it becomes very real how much Lyme has affected not only my body and my ability to function as a wife, mom and marketing manager — it has also put us deeper into debt than I thought was possible. But I know that somehow God will provide . . . not only financially but emotionally. He will provide the strength I need to get through these next few weeks — that (if the medication works) should be very intense. But just like Lyme has their sticky biofilm to protect them, I have the biggest, toughest force field of all . . .  Jesus! He will protect me from anything this world can throw my way. I just have to remember to ask for help 🙂

Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

—Ephesians 3:20

Underwear on Christmas morning

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It has been exactly one year from the day that my lyme disease journey started. After two rounds of antibiotic for what I thought was a sinus infection, I ended up in the ER. 365 days later, I am so close to recovery that I can smell it. It’s been awhile since I posted, mostly because I’ve been feeling better and super excited to once again be an active participant of my family . . . . carpooling back and forth to practices, helping coach the cheerleading squad, pitching in at home and even cleaning the bathrooms! It sounds silly and insignificant but these are the things that were piled on my hubby’s plate or neglected for the past year.

I had this great  idea of doing a “Top Ten things I’ve learned this past year” but I felt like TEN wasn’t nearly enough. So, I tossed around the idea of 365 things I’ve learned, but figured I would lose every reader (except my husband!) after about 15! Then after my experiences today, I realized it’s not about all of the little things I’ve learned over the year that may only be relevant to my fellow lymies – but it’s about the experiences I’ve had over the past month.

November 9th was hubby and my 18th anniversary. We celebrated by going out to dinner and listening to a christian rock band at a local church. During intermission they educated us on a charity that was near and dear to their hearts: Compassion: a Christian child advocacy ministry that releases children from spiritual, economic, social and physical poverty and enables them to become responsible, fulfilled Christian adults. I was overjoyed when my hubby suggested that we sponsor a child! We walked to the front table and sifted through the hundreds of children that needed a sponsor. As I gazed through the pictures, my eyes were fixed on a sweet little girl with the most beautiful smile. I picked up her packet and started to read about her. She was a five year old from Kenya. Her name was JOY. JESUS, OTHERS, YOURSELF. That was our girl. It was the best anniversary present ever! We were super excited to share this news with the kids and sit down and write our first letter to her.

Well, with the end of football, the beginning of basketball and life in general, we still hadn’t taken the time to sit down and do this. Every time we attempted to, something happened and we got distracted.

This past week, we held a food drive at work for local single moms. Our wonderful clients dropped of bags and bags of food and even frozen turkeys. My children and I had the opportunity to drop all of this food at my church. It was so rewarding being the “Santa” of Thanksgiving, but I felt like a bit of a phony. I wasn’t the one who donated the food. I didn’t stand in line at the food store or use my own money to pay for it. I simply sent out an email asking for donations and delivered the food.

While we were at church, my oldest son asked if he could go shopping at the church bookstore. He brought his wallet with his birthday money that he had been saving for well over four months. He looked around for awhile, then asked me what I wanted. I told him that it was a sweet gesture, but that I didn’t need anything. He insisted and suggested a hand made scarf from Nepal. It was beautiful! And ironically, I had just mentioned to a co-worker that I wished I had a few new scarves, but didn’t want to spend the money on them.

I walked outside to check on the triplets and when I came back in, the older woman behind the counter was giving him a big kiss and a hug. What I didn’t realize was that she refused to let him pay for the scarf and explained how God works in your life, when you do things for others.

Today he insisted on going shopping for Joy. He wanted to buy her a warm fleece blanket that she could cuddle up with at night. He still had a Target gift card and $15 left from his birthday money, so he was adamant about getting this for her. Once we got to Target he searched high and low for the softest, biggest, pink fleece blanket he could find. He also found a pretty pink pillow and a stuffed animal for her to sleep with.

While we were at Target, we also looked for fillers for our Operation Christmas Child – Samaritan’s Purse – shoeboxes (an organization that delivers shoes boxes filled Christmas gifts to children around the world). We all had a blast picking out the coolest toys, small enough to fit in a shoe box. When we got home, we logged onto their website to look for last minute suggestions. My oldest son purchased a rubix cube, puzzles, colored pencils, yo-yo’s, nurf footballs and more for his box. We were heartbroken to find out what they really wanted:

John 14 years, from Madagascar Underwear is a far fetched dream for our parents to buy for a primary school boy – they do not think it is a necessity. I have been praying for the day I would wear underwear.  As we are growing, we become conscience of our environment.   I got the most precious gift,  six white under wears of my size.  I am now comfortable at school.  Thank you very much; I know it is God answering my prayers

Here I am torn between an action figure and a matchbox car, when what they really need are the necessities that we take for granted.

 

At the Lyme doctor this week, I learned that I may only have two more months of treatment left. I was so excited to learn that my good days weren’t just a figment of my imagination, but that I was actually starting the healing process. Having a light at the end of my dark lyme tunnel was the best news I had received in as long as I can remember. I read a quote while we were in the office that said, “The only way out, IS TO GO THROUGH!” How true.

But knowing that there are so many children around the world that have needs that are beyond what my brain can imagine, makes my journey through Lyme seems very insignificant. I’ve  battled the Autism journey, triplets plus one, Alzheimer, ADHD, depression, post traumatic stress syndrome, and so many other things that I thought NO ONE could even understand or “get.” I felt so alone in the world, dwelling on my own battles, when in reality all they did was bring me closer to God.

Some of these children live in poverty and in countries where even speaking of Jesus could have them murdered. It just makes me realize how blessed I am to have hit my rock bottom and turn my life over to the one who gave it all. . . . Jesus. No blog or shoebox or fluffy blanket could ever do what he did for me (and you).

Remember that as you stress out over the upcoming holidays and you find yourself complaining about those  times in your life, think about Christmas morning at your house.  When your children find underwear under the Christmas tree, do they toss it aside annoyed that it’s not an xbox game or do they view it as a answered prayer by God?

Titus 3:4-7
But when the kindness and the love of God our Savior toward man appeared, not by works of righteousness which we have done, but according to His mercy He saved us, through the washing of regeneration and renewing of the Holy Spirit, whom He poured out on us abundantly through Jesus Christ our Savior, that having been justified by His grace we should become heirs according to the hope of eternal life.

Convenient Memory

The mind is a beautiful thing. It’s absolutely amazing how you can conveniently block out certain parts of your life, as if they never even happened. Think of a woman who just gave birth. She has suffered through hours and hours of unimaginable pain, and the minute that baby is put into her arms, the pain is a distant memory, and she’s ready to have five more kids.

That’s kind of what I’ve been going through. I’ve actually been second guessing my mommy gut instinct.  Maybe I am just run down, and maybe this is simply a case of “mind over matter.” I had been feeling almost completely symptom-free and back to myself the last few days. So much so, that I was starting to think that maybe I was just being a big wimp about everything I’ve been going through for the past few months . . . .  until today.  I guess this is what you call a “flare up.” Well, it confirmed without a doubt in my mind, I’m not a wimp. Something is definitely wrong. I am not a hypochondriac. What I am experiencing is very real. 

For documentation purposes, I’m going to do a quick head to toe list of symptoms I’ve had tonight:

– migrane
– teeth sensitivity
– sensitivity to sound & light
– ears ringing
– jaw pain (tooth pain)
– neck, shoulder and back pain
– pins and needles sensation in my arm
–  arthritis pain in my wrist and knee
– pain in my shin
– overall body aches
– muscle spasms (not limited to just one part of my body)

Now, google Lyme disease symptoms . . . . . hhhmmmm pretty similar to what I just listed, right? I get it, I have to follow protocol, Lyme is a very controversial issue in the medical world, but I KNOW that this is what’s going on in my body. And I know that the longer it takes the doctors to start treating it, the more progressive this disease is going to get. 

Again, this whole Lyme journey is so similar to what I went through with the boys and their Autism diagnosis – and my mom with her Alzheimer. We all knew what was wrong. Yet, we had to go through rounds and rounds of tests and evaluations, wasting several years of valuable time for what? To have the doctors tell us, what we already knew all along. 

But in hinds sight, it wasn’t a waste of time. It was God’s plan. If it wasn’t for the struggles I went through with the Autism fight, I would have never known how to be my own Lyme Disease Advocate. But God allowed those things to happen in my life, so I would be strong enough and confident enough in myself, to weather this next storm. And like I always used to say, Life is not about waiting for the storm to pass, it’s about learning to dance in the rain. So, after my detox bath I’m going out dancing! (better yet, I’ll let the sugar plumbs do all the dancing in my head, while I’m sound asleep).Image