It’s been one week today that I started this new round of treatments. I can sum up this past week in one word – WOW! I cannot say it enough or emphasize it enough, but Lyme is the craziest, sneakiest, most mind blowing disease in the history of all diseases! I know I sound like a broken record, but once again I had forgotten how sick I was. My little Lyme buggers must have been hiding deep within the crevices of my cells, because I honestly thought I was close to the finish line. Until . . . . I started three antibiotics a day and my body was thrown into herxing! Words really can’t describe the exhaustion. It really is more like a comatose state than anything else. You really can’t move. You really can’t speak. My words become short syllables that slurred out of my mouth. I fought with every ounce of energy in my body to keep my eyes open, but I lost. My hubby asked if I was okay, I can only shake my head . . . . no, I’m not okay. I picture myself last night curled up on the couch, in the dark, not able to function. And I can’t believe that this is the same person who went to a Kickboxing class just one week ago (and kicked butt, I might add). How is it possible that just a few pills can do this do a person’s body? Not to mention, I woke up feeling perfectly fine. Talk about the physical and mental stress of going through this every few days! It is so hard to comprehend and even harder to explain to someone else who is not going through it. I was at a conference today for work and came across a hospital that was giving away free acupuncture sessions. I LOVE acupuncture! It worked miracles with my pregnancy, with my immune system, with my stress and I know it would help with my Lyme (problem is with $500 dr visits and thousands of dollars in supplements and prescriptions, there’s no money left for anything else). It just so happens that this doctor also has Lyme (God works all things for good) and we were able to share our horror stories and more importantly what helps and what doesn’t. If you recall, the last conference I attended, the booth next to us was selling some sort of chiropractic pulsing/massager that was supposed to cure migraines. It was a blow to my spirits to learn that event this product – worthy of being used in professional chiropractor offices around the world, did not come close to relieving the pain of my migraine. It was then that that I remembered reading an article about Lyme pain, and that the pain that I am feeling isn’t real HEADACHE pain. Lyme is tricking my brain into thinking I’m having a migraine, but I’m really not. Which is why when I try your typical medication or therapy for migraines, I get no relief. Hence – the feeling of hypochondria. So, now I’m sitting here . . . my legs are twitching and spazzing like a doctor is checking my reflexes; the right side of my neck has shooting pain going up and down it; my back is aching like I’m in labor; and I have a headache behind me eye that is traveling to the back of my head. The good news, my first ever biopsy came back negative this week (thank you God!), and tomorrow I get a 24 hour break from the antibiotics. So, that calls for a celebration! 1 Corinthians 10:31 – Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God. There may be question as to whether my pain is in my head or in my bones, but there will never be a question in my mind about how much God loves me. He will always be there for me and help me. . . All I have to do is call out to Him. If you’re going through a rough patch, wondering how much more of this pain or chaos you can handle, just reach out to Jesus. He’s the only one who can cure. No prescription, no medical device nor therapy can compare to the power of HIS name!
Lyme
Lyme is no opponent for Wonder Woman and her force field!
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
LYME: A day in the life
A typical morning in our house.
One more rep in this Lyme disease workout.
One of the things that I love about writing this blog, is that no matter how crappy I feel, no matter how much I want to whine about my aches and my pains, I know that at the end of the post I have to force myself to find the silver lining on this crappy cloud. But it’s SOOOO hard sometimes. Especially when my body feels the way that it does. I’m a runner, a kick boxer, a group exercise instructor…. I used to bench press and do push ups for five minutes straight, to the beat of an energetic song, while leading an entire class. But now I use my legs to lift the top of the tanning bed off of me, so I can climb out fully clothed (see previous post for explanation), because my arms are too weak to lift it. I used to punch the heavy bag so hard, that my knuckles would bleed – and I LOVED it. Now, I go to work with my hair half wet, because my arms can not hold the hair dryer above my head for more than a few minutes, without draining every ounce of energy out of my pathetic body. I used to love pushing myself to the limit, jumping just a little higher, kicking just a little bit hard, running a little bit faster . . . . whether the goal was a finish line, or just the cool down at the end of class. There was always a reason to push and I never gave up.
Now pushing myself to my limit, is moving a small desk from one side of the room to the other. Not feeling a sense of accomplishment at the end, but feeling regret. Feeling regret, because now there is even more pain on top of the daily, crappy pain that I have to endure. But I guess this is where I have to search long and hard for that silver lining on the crappy cloud called Lyme disease. But if you think about it, the group exercise instructors don’t stop just because their thighs are burning – they keep going. They have to. It’s their job. And they have to be a good example. No matter how tough the workout is, they have to maintain good form, use good technique, keep up their endurance… and most importantly stay positive and encouraging through the pain! (Now it’s all coming together…. I almost hate that!)
As a runner, I know that I get my second/third/or fourth wind when I can see the finish line. I guess in the Lyme race, it’s a bit harder because I don’t know where the finish line is. I don’t know how many reps I have left or when this song is going to end. As far as I know, we’re only in the warm up, and I’m already feeling like I can’t get through this 60 minute class. I guess now I understand how those “New Years Resolution” people felt at the gym every January 🙂
I’ve got this devotion taped to my wall at work, I refer to it almost daily. It says:
“To him who knows to do good and does not do it, to him it is sin.” James 4:17
The devotion goes on to say that God has given us two secret weapons to use in our world today. What are they? First I will tell you what they are NOT: whining and complaining. It does not do any good. Neither does boycotting or protesting. The two secret weapons that God has given to the church are praying and preaching. We pray for our nation. We pray for our people we will share the gospel with. And then we share the gospel with them.
So, that’s what I have to do. And my hope is that you will do the same. Whining and complaining really doesn’t change anything. In fact, it only makes the situation worse. And it shows the enemy your weakness…. which he will be all over! So, I choose to stop typing such negative things and thank God for this challenge, because I know that this is HIS will and maybe, just maybe my suffering will in some way help to be the light for someone’s darkness. Or bring them closer to Lord. And if that’s the case, than it’s all worth it. In the meantime, I’m going to grab my blanket, and snuggle up with my family on the couch, because no matter how crappy I feel, my arms are never too weak for big squeeze hugs.
Mile Number One
Monday I had my first appointment with the Lyme specialist. In a strange way, it reminded me of running the Broad Street Run. I was over flowing with excitement before the race started and when they fired the gun all I wanted to do was sprint full speed ahead! But I was smart enough to know that I had to keep my calm and pace myself or I would never make it to the finish line.
The first thing that I noticed was the LYME branding all over the place. Maybe it’s because I’m in the marketing field, or maybe it’s because I’m sensitive to Lyme now – but I couldn’t help but notice that they had green decorations, green office chairs, and of course the big bold words: LYME SPECIALIST on the door. I found that very interesting, because if you were to look in any health insurance directory, you would find Haverford Wellness Center under the heading GENERAL PRACTITIONER, not Lyme Specialist. Oh – that’s because technically there’s no such thing as Chronic Lyme Disease, therefore no such thing as a Lyme Specialist. Interesting, right?!
Every online review that I read mentioned how caring and compassionate the staff at Haverford Wellness Center was – and they definitely lived up to my expectations. Everyone from the front desk, to the nurse that drew my blood and even the patients in the treatment center made us feel very comfortable, like we had been patients of theirs for years. The physician assistant spent over two hours with us. He answered all of our questions and was beyond thorough when it came to getting my background. He never once made me feel uncomfortable, as I explained my laundry list of random symptoms. I even shared more about my personal battle with depression than I ever intended. We talked about the tests that I’ve already had done, how the Thyroid levels affect my energy level, as well as what tests still needed to be done.
After the consultation, I was sent to the treatment area. There were five or six patients hooked up to IVs receiving antibiotic treatments. It looked like (from what I’ve seen on TV) a hospital chemo treatment room. It was very erie at first. But then one of the patients actually told us to grab a seat and make ourselves comfortable! Then the nurse came over, and after tying that giant rubber band thing around my arm, she warmed up a bean bag and gently placed it on my arm. Then I remembered one of the reviews that I read. “Only a Lyme Specialist would be thoughtful enough to have heated bean bags!” I didn’t understand it when I first read that review…. actually I was imagining a giant bean bag chair that had a heat/massage feature on it! Guess that’s my creative imagination gone wild. Anyway, I guess warming the veins makes it easier to draw blood. Because when the nurse came back, she got my vein right away – which in itself is a miracle! And there was no pain… it was a beautiful thing.
Like the Broad Street Run, I wanted to run and get to that finish line – diagnosis and treatment. But unfortunately, this is only the first mile. During the next few miles, I have to (unfortunately) look for another doctor. Like most Lyme Specialists, Haverford Wellness Center does not accept insurance. Despite the fact that my husband and I both have health insurance, we paid over $500 for that first visit. As I’ve mentioned in other posts, we are already in debt way over our head. If there are doctors out there, that treat chronic lyme disease, and are in my network, I have to consider switching . . . even if they don’t have heated bean bags.
But with or without the heated bean bags, and the really, REALLY nice staff, I know that I will end up with the care that God has planned for me. I may not like it, I may not understand it, but I am thankful for it – because I’m just a lost sheep. HE is my shepherd and I just want him to bring me home.
1-Peter 2:25 “Once you were like sheep who wandered away. But now you have turned to your Shepherd, the Guardian of your souls.”
Feeling HOT, HOT, HOT!
It was just a matter of time before the NIGHT SWEATS made it to my own personal symptom list. I was feeling a little left out, not having EVERY SINGLE symptom that I’ve seen other Lymies post 🙂 Kidding! But yes, they have hit. The first couple times, I thought maybe I just had the heat up too high, or maybe I wore something to bed that made me sweat – but last night, it was 22 degrees outside, the winds were gusting up to 28 mph, it was snowing and I went to bed in a tank top. When I woke up from my sound slumber (another sarcastic joke) my winter wear AKA tank top, was covered in sweat. Well, if I’m too tired to workout at least, I can get a sweat going while I’m sleeping. I guess rolling around in the middle of the night, is the most exercise I get during the day! Oh, I’m on a roll today!
Well, the good news is that since I don’t sleep well and I wake up in a puddle, I’ve actually been getting up before my alarm (or at least when it goes off the FIRST time) and I’ve been reading the bible before I start my day. I have tried, and tried, and tried to fit this into different parts of my day – convincing myself that a mom of four who works full time, just doesn’t have the time to carve out time in her schedule to do this. I’ll just talk to God throughout the day, praying in my car, while I’m cooking dinner . . . yes, that’s all well and good, but it’s not enough. I realized that the day I was waiting for my first lyme test to come back. I couldn’t sleep, was terrified about getting the results. Instead of being upset about not being able to sleep, I was thankful. Thankful that HE gave me that time to be able to drop to my knees and reach out to HIM. I had been waiting and waiting for the right time. I had the urge for emotional prayers, I was tired of my monotonous prayers. I wanted to be more passionate in my prayers, but I didn’t seem to have the need or desire.That day, I certainly had a reason. This is what I wrote in my journal that day:
“I know in my heart that God is working. He has a plan to slow me down, to rid my obsession with vanity through this suffering. I am excited because I know this is HIS will, I’m excited because I know that through these trials I will come to him, like I have this morning. I am excited about the future, because I know that the outcome of this will be wonderful and HIS will, so it has to be perfect.”
I asked God to lead me to a verse that would speak to my heart. I turned to 1 Samuel 25. I read for awhile, nothing seemed to click, until 1 Samuel 26:24 And, behold, as thy life was much set by this day in mine eyes, so let my life be much set by in the eyes of the LORD, and let him deliver me out of all tribulation. I realized that when the Lord reached out to Saul, he did not stretch out his hand. But when the Lord reached out to me, when I was at rock bottom, I went running to him with open arms. I knew he was the light. . . . the only way out of the darkness that had become my life. I finished that journal entry with this, “He is with me. He LOVES me and there is nothing else I need or want. Thank you JESUS!” God is the same today, yesterday and tomorrow. Are you?
Under Our Skin
I am filled with even more determination to fight for my health and educate the public about the misconceptions of Lyme disease, after watching UNDER OUR SKIN. This is a real-life documentary that exposes the controversy surrounding chronic Lyme disease. Wow… I’m really speechless, it’s like I’m reliving old Child Study Team meetings – where I’ve begged and pleaded with the entire team to provide behavioral services and a full day with typically developing peers for my children. My request was denied over and over. BUT, the minute that we hire an attorney who advises us to consult with a Special Education Consultant – who then observed their classroom to ensure that it was meeting their needs, the Child Study Team leader calls me and invites me to tour schools outside the district that provide a full day, with behavioral therapy…. at their cost, of course.
I knew that was what the boys needed; the entire team knew it was what they needed; but it wasn’t until I could hire someone (third party) to prove it – it didn’t matter. So, that’s what I’m doing. Just praying that I seek the medical attention that I need. I don’t want to jump to conclusions, but I want to be smart about my health. I sat down tonight, prayed that God would speak to my heart, lead me in the right direction. I’ve been struggling today on whether or not I should skip the appointment with the endocrinologist and just go straight to a Lyme specialist. It’s an hour away, and of course it’s not covered under insurance – so it’s a tough call to make. Hence the prayer 🙂 I was led to Genesis 39:21 But the Lord was with Joseph and showed him mercy, and He gave him favor in the sight of the keeper of the prison . . . 23 The keeper of the prison did not look into anything that was under Joseph’s authority, because theLord was with him; and whatever he did, the Lord made it prosper.
As always, HE answered my question. It doesn’t matter which doctor I see first, or how long it takes to get an answer. HE is with me always. Whatever I do, the Lord will make it prosper – so if I have to suffer for another few months or years to get my diagnosis, then that’s what I’ll do. In the meantime, I have the opportunity to share my trials and tribulations and bring hope to someone that may be struggling right now. I’ll continue to do what I do….. educate myself, pray and share. I will glorify God throughout the entire process.
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).
Lyme. Autism. Alzheimer. Oh my! 