Making Lymonade- How'd I Get Here?

Almost 2 years ago to date (11/6/17) my body started to fail me. I woke up with a huge lump in my neck, excruciating pain and wasn't able to turn my head. Now I'm used to excruciating pain, I've had a chronic neurological illness called trigeminal neuralgia since 2001. But this pain was different. It was so bad, I wondered if I was having a heart attack?

A trip to urgent care led to the diagnosis of a muscle spasm, a prescription for muscle relaxers and instructions to follow up with my primary care doctor. An examination by my primary care doctor led to a prescription to PT to work out my muscle spasm.

A few months before this whole ordeal began, I had become a certified Refit instructor (think a lighter version of Zumba) and was super excited to launch a class at my church. Activity was a part of my everyday life. We were an active family- hiking, biking, kayaking, paddle boarding on vacations. Movement for me was medicine both emotionally and physically and helped me to manage my trigeminal neuralgia.

But every time I moved my upper body, my neck, shoulders and biceps went into spasm. And soon, any movement (except for walking) triggered spasm. Even worse, the spasms staring triggering my neuralgia and kept me in an endless loop of shock like nerve pain in my neck and back of my head. I had to give up leading my fitness class and all movement. The pain started to take over my every day life. I bought a special pillow to try to sleep. I couldn't get my head comfortable. I only slept thanks to muscle relaxers and my neuralgia meds. I lost my ability to do things even the most basic things around the house. I could not even lift laundry in and out of the washer. Grocery shopping/any kind of shopping was out of the question. I couldn't lift the bags or even move my neck to look up to a top shelf. I did as little movement as possible during the day and went to bed early. Even work was challenging. I'm so thankful I get to work from home and could take breaks to ice, heat and rest.

After 3 months I had made little progress with PT. My PT was fantastic but we couldn't figure out why my body continued to spasm even with treatment. My neuralgia continued to get worse, it was the worst it had been in 7 years. I went to my long time neurologist for answers. He sent me for an MRI and identified I had a herniated disc in my neck. AHA- finally, a reason for my nerve pain. He sent me to a spine doctor and because PT wasn't working I did a cervical injection. The injection gave me relief but after a few months the shock like pain came back. I began PT again with only slight relief. So I went back for another injection. Once again, it gave me relief but the pain came back. I asked the spine doctor why my disk didn't seem to be healing, he said it was degenerative. I didn't buy that answer, I am only 47 years old and before this, in great health.

All of this transpired over 19 months. 19 months!!! My body continued to decline. My hair texture turned sticky/greasy and my hair (usually super thick) started to fall out. The muscle spasms traveled into my thighs. I had no exercise tolerance, even light movement created muscle spasms. In the spring of 2019, I was lost and had no answers. I began to consider seeing a counselor because I just couldn't deal with the pain anymore and didn't know what to do with myself.

If I could push pause in this story and share that before this whole thing started, I was a healthy eater (I had lost 40 pounds in 2011/2012). I took great care of my body. I moved daily. I meditated/prayed to manage my stress. I did acupuncture to manage my neuralgia symptoms. Self care (because of my neuralgia) was super important to me. My neuralgia was managed and I was living my best life. Seriously, I was on top of my health game! My acupuncturist who has been treating me for 9 years now and who I trust implicitly had said to me a few times, your symptoms present like Lyme disease. And my massage therapist who I've been seeing for a year now said the same thing. That my body (and lymph nodes) were filled with some kind of toxins.

I half listened because of course I've had ticks on me (from hiking and having pets), but I never had the rash or any other symptoms (so I thought). But finally in June of 2019 I made an appointment with a holistic MD. One of the many blood tests she ran on me was Lyme and it came back positive.  Along with several Lyme co-infections. Those nasty little bacteria were eating away at my system for years. She referred me to her partner, a Lyme literate MD and we began a treatment regimen at the end of August.

I'll share my treatment regimen and how I'm doing (amazing BTW) in my next post but let me just say...that not one soul...not my primary care doctor...not my spine doctor...had Lyme disease on their radar. And it's a damn shame. Because I suffered for almost 2 years. It is thanks to my acupuncturist, my massage therapist and my new doctor that I'm healing and starting to get back to being me again. I prayed so hard for healing and answers and I finally got them. And it feels downright miraculous.

This is a shortened version of almost 2 years of hell, a whole bunch of medical shenanigans and thousands of dollars spent on unnecessary treatment. I am sharing my story because I know that hundreds if not thousands of people are suffering from  diagnosed Lyme. I didn't realize until I got diagnosed how controversial chronic Lyme is. That there are some medical professionals/institutions that don't believe it exists. I am beyond grateful that I've been paired with the right caregivers. The peace I now feel in my mind and body (after only 2.5 months of treatment) is honestly unbelievable.

I've had this mantra on my refrigerator since June. I am healing! And little by little I am. I share my story because there's hope. Always hope.

Continue with courage.
XO,
Tara

Leaning into the Uncertainty

This post is for everyone who is sending their kids off (no matter their age) into the world, who are feeling a bit unsettled.

It came from a chat with my bestie about the empty nest which can also be known as the restless nest (from my point of view). It's not just for empty nesters, it's for all of us who are trying to balance the never ending push pull of being a parent while also trying to be ourselves.

It's also inspired by a FB post from my Aunt about blooming and knowing who she is and where she fits in the world. "Ha, back then I thought I was just a wife, mom and grandmother. Now I am ME! (still a mom and gmom but..."

Her words resonated with me as perhaps they do for you. I most certainly lost myself in my 30's, in the peak of raising 2 kids while working and trying to be and do it all. And on top of that, to be it all and do it all perfectly. Ugh, exhausting! And as the reality (and also excitement) of empty nest freedom began to loom, I also began to wonder who the hell I was...it made me understand the whole mid-life crisis thing. But why does it have to be a mid-life crisis? Why not a mid-life opportunity?

Even after launching 2 kids, there are days when I have no idea who the hell I am. So many life changes have taken place over the past few years. Some good. Some crappy. Some freaking fantastic! They've left me feeling unsettled. I don't know who I am without fitness...I don't know who I am without my kids...I don't know who I am without something to do...I don't know who I am without <insert yours here>...Without the drama...without my job...without my spouse...without my parent...without the food/alcohol/drugs...without a friend.

I like to do. To have a plan and execute. I usually have a few goals in my back pocket that are my next to tackle. I hate uncertainty. I hate waiting. I like to know what's next. I'm awful at being still. So this phase of life has me feeling antsy. Health issues have forced me to slow down. But slowing down means too much Tara reflection time. Aka analyzing the heck out of things.

Usually when we meet someone for the first time we tell them what we do, or that we're so and so's spouse, or parent, or friend. We create these roles and if you're like me that feels good, comforting. What happens when this changes? Either by our own choice or not. I believe that's where the mid-life opportunity comes in. I love the thought of shifting our mindset from the idea that life is happening to us to life is happening for us. I know that if you're in a real shit moment right now you're probably rolling your eyes and tuning out...but I firmly believe this.

It reminds me of Hillsong's song, New Wine. I listen to it on replay during times of change.
In the crushing, in the pressing, you are making new wine. 
In the soil, I now surrender. 
You are breaking new ground.
So I yield to you and your careful hand. 
When I trust you I don't need to understand. 

I may not know who I am at the moment or where I'm going. Yet my heart is slowly settling. It can do that because of what I know for sure. I know who I am with God. I am loved. I am provided for. I know who my kids are with God. They are loved. They are provided for. And this brings me peace.

It also brings me courage to lean unto the uncertainty. To lean into who I am now. To be more patient and kind to myself.

To embrace where I am physically. I will not reduce myself to my limitations. All the fun stuff that comes with age. The gargantuan chin hair. Losing my glasses when they're still on my head. Unruly eyebrow hairs that have a mind of their own. The aches and pains. The oh so awesome night sweats.

I lean into the not knowing. To the paralyzing fear of my unreasonably high self standards. Of not being enough or doing enough as a spouse, a parent, a family member or friend.

I release myself from the unrealistic societal pressure of beauty, physicality and home life. From the Instgram and Pinterest cultivated lifestyles that I'll never measure up to.

My mantra lately has been to be positive and present. Not racing so hard to get into a future state to when things are better or different. In doing this I change my narrative, from being a victim of my circumstances to victor over whatever life brings.   

Lean in to you.
XO,
Tara

On Hope and Healing

You've seen my healthy selfies. My posts encouraging you to move more and to put healing foods in your body. I'm sure they can sometimes be annoying- blah, blah, blah Tara, shut the heck up already. But perhaps you don't know the reason for my relentless pursuit of health. It's to help me to live my best life in spite of having a chronic neurological illness and to empower you to take control of your health. 

The girl on the right in this picture was suffering. But I love this picture because 2010 was the year that my life changed. I’ve had trigeminal neuralgia for 18 years, but it’s only over the past 9 years that I figured out the importance of slowing down for complete self-care and opened myself up to holistic treatments. Once I had an open mind and became curious (instead of angry) about my illness, my health started to change. I went from someone who was bedridden, at the end of her rope, lost, sad. I just laid in bed and cried, but crying triggered pain. I also ate to soothe my pain gaining 40 pounds. Some days my husband and kids couldn’t touch me, I hurt that badly. I was desperate for hope. I went to a depressing support group and didn’t find a ton of hope or help online. All people did was talk about their suffering. I was on heavy meds and was about to go out of work on disability. The meds were making me lose my mind. I got lost driving home from work. I’d go to the grocery store and forget why I was there. I withdrew from family and friends. I wasn’t sure how I could go on. It was a dark and painful time. Out of desperation I went to an acupuncturist who also happened to be a holistic practitioner and health coach and slowly we started to change my lifestyle.

Of course I didn’t do this all at once, I tried one new thing at a time to see what worked for me and what didn’t. I lost the weight. I changed my job which was creating a tremendous amount of stress for me. I discovered how much fitness impacts my neuralgia in a positive way. I armed myself with some great practitioners. I have an excellent neurologist- I now take Maxalt as needed to control my neuralgia flare ups instead of the daily harsh meds in combination with the holistic practices below.

I have bad pain days, especially in the winter. But I went from taking anti-convulsant meds like candy to only needing them about once a month. I recently went 85 days without pain meds! For the most part I’m active and healthy and I’m living my best life in spite of my illness. It doesn’t control me, I am in control. I refuse to be a victim, I will be a victor!

I have a friend whose mother was recently diagnosed with trigeminal neuralgia and I wrote this to help her. No matter what chronic illness you're facing, many of the below actions might help you too. 

What helps me:

Prayer/faith- couldn’t get through this without it!

Exercise- daily movement is a natural mood enhancer and pain reliever. Even just walking daily and light stretching.

Managing stress- meditation, setting boundaries, counseling.

Acupuncture- allowed me to stop using the heavy daily meds like Neurontin that were ruining my life. I did acupuncture once a week until my nerves settled down, now I do it every other week. Here’s my testimonial: https://acupuncturecure.com/testimonials/

Nutrition- reducing inflammatory foods. Adding in anti-inflammatory foods and supplements. Removing gluten, dairy and soy is quite the commitment but has been a game changer. I could feel my nerves relax within 2 weeks of going gluten free. https://www.glutenfreesociety.org/no-grain-no-pain-the-book/

Finding a holistic practitioner- https://myfunctionalmedicinedoctor.org/ that can blend eastern and western medicine. I’d strongly recommend Micronutrient testing. Many nutrient deficiencies can mimic nerve pain. The supplements that have helped me the most are:

https://www.metagenics.com/ultrainflamx-plus-360- can only be prescribed by a practitioner.

https://www.amazon.com/gp/product/B076B6JTMW/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1- - I take this twice a day with water and it’s really settled my nerves. You can find it on Amazon.

https://www.amazon.com/Relief-Magnesium-Arnica-Homeopathic-Strength/dp/B01J2BN338/ref=sr_1_3?crid=1SPVZ0NL7HWXX&keywords=magsoothium%2Bcream&qid=1564669856&s=gateway&sprefix=magsoo%2Chpc%2C139&sr=8-3&th=1- I rub this on my neck, shoulders and back of head.

Massage- I was afraid to get massage but this year discovered that massage helps me greatly! Craniosacral therapy has given me incredible relief. I was going once a week and now go once a month. I wish I had discovered it sooner!

Journaling- I keep a daily pain journal, rank my pain from 0-10 in the morning and again at night and note any triggers or what made me feel better.

Knowing my triggers- Extreme cold and heat, humidity, noise, stress.

Having a good support system- My closest friends and family know what I’m going through. They know my triggers and my limits. They understand when I say no or have to reschedule. It took a while for me to be able to share with them because I didn’t want to be a whiner. But it’s been important to me and to our relationships.

Mindset- I have to choose to live in faith over fear. This illness can be depressing, exhausting and you can become paralyzed by fear. Many people with trigeminal neuralgia stop living their best life because they fear the uncertainty of when the next attack will come. So they just hunker down and don’t do anything. I surround myself with positive people, books and podcasts. I stay engaged in things that bring me joy. I practice gratitude daily, even on the days I have pain. I moved from a mindset of “why me God” to “what will you have me learn from this God.”

As I write this I'm extremely overwhelmed with gratitude of the angels who've been put in my path to help me heal and give me hope. I want you to see and believe that there is hope for you too. You might be in a really dark place right now and you have no idea how you're going to dig yourself out. Just the thought of doing something different is enough to make you want to quit before you start. Just do one thing. Just one. Once you master it, do one more. Soon you'll find that your life is changing. One change, one choice at a time. Things will get better. You can get better. 

Hugs and friendship,

Tara

Space and Grace

Have you ever felt completely overwhelmed by life? Like you're swimming in the ocean and the waves just keep crashing down on you and it's hard to find air?

I remember a time clearly when just returning a library book became an overwhelming task. It was in the early days of my neurological illness, before I got diagnosis and treatment. I was in bed daily, crying through the pain. Struggling to be a Mom to two young kids, a wife and work a full time job. A library book sat on my bedside table for months. I'd give it a glance every once in a while, knowing it was overdue. I could have easily asked my husband to return it for me. But I simply didn't have the mental wherewithal to make it happen.

Maybe you can relate. You're muddling through life right now and the smallest things can throw you into a tizzy. The dirty dishes or laundry piling up, unpaid bills, your kids homework. Let's not even talk about focusing on self care. And you can't remember when you took time for the f word, fun. There are some days when just taking a shower feels like an accomplishment. You do what it takes to survive the day at hand, roll into bed, and do it all over again.

I hear you friend. I was just venting to my hubs about my neck/disk injury. I've spent the past 18 months in a battle with myself. Don't tune me out, I know that you might be facing something way harder than a physical injury. But I think we can both agree on a few things:

1) It sucks when something or someone you love is taken away from you.
2) Change can be long and slow and painful and seemingly without reason.
3) The only road to found is lost.

OK, so I stole #3 from Toby Mac's new song Scars.
"Life ain't got no sequel.
We all broken people.
The only road to found is lost.
Oversimplifyin'.
Ain't no shame in trying.
Passion never counts the cost.

As I was having a little pity party for myself tonight, because I've had another painful physical setback, God threw that Toby Mac song my way. It's like He was in my head and in my heart. Because I wanted to stop trying.

For the past 18 months my goal has been to be patient, present, persistent and positive. To do this I've needed to rely on my faith, in God and in myself.

Being patient requires presence and trust. Those who know me know, I am not a patient person. I'm a doer and I'm always thinking ten steps ahead. I simply don't have time for patience. I had to learn to  slow down and focus on the day at hand and to trust God with the rest. This is a super difficult discipline because I'm also a control freak, ha! But I need to truly trust and believe that God has got me and my future in the palm of His hand and that His plan is good. 

Being persistent requires obedience. There are some days when I'm just too exhausted to do what I need to do to heal. Physical and emotional healing is hard work and it requires consistent behavior. Obedience is taking consistent action even when we don't feel like it. Obedience is trusting that God will show up when we just don't think we can take another step.

Being positive requires gratitude. I have a quote in my office "worry refuses to share the heart with gratitude." Gratitude can cast out fear and doubt. When we're grateful, there's no room in our hearts for anger, frustration or sadness. Now don't get me wrong, I'm not saying it's easy to put on your positive pants when you're in the thick of it. When I'm in one of my mental pity parties, I do a lot of different things to dig myself out. I open my bible/devotional. I pray. I breathe. I call a friend. I do DIY. I exercise. I listen to my favorite jams. I watch YouTube or Ted Talks. I read a personal development book. I write down 5 things I'm grateful for. I intentionally seek out joy. Every night when I lay down my head, no matter what kind of day I had, I thank God for the gift of another day.

I'm not saying that we shouldn't feel the pain. We should sit with it for a while. And that time period  is different for everyone. We need to allow ourselves the space and grace to get through it. I love the quote below "so far you've survived 100 percent of your worst days. You're doing great!"

Maybe that sounds trite, but it's true. Whatever sheer hell you're facing right now, you will get through it. Give yourself the space and time to heal. Be willing to be still. To listen for God's whisper in the midst of the chaos. He's loves you so much and He's trying to tell you something. What does He want you to do next?

And for the love of it all, please dear friend, give yourself some grace. However you get through this, it's the right way for you. Patience, presence, persistence and positivity don't require perfection. Change happens when you show up and do the work.

Don't ever give up on yourself and your dreams. No matter how many times we fall down, we get back up. We keep trying because "passion never counts the cost." 

Hugs and friendship,
Tara

The F Word (Fear)

My saying in 2019 is "F the F Word", how about that?!? Well actually it's "I will rise", but lately I've been feeling feisty about the F Word (fear) so I thought I'd post about it.

Fear. It can be exhausting, exhilarating or both. It can push us toward our goals or away from them. It can spring us into action or stop us in our tracks. The kick in the pants? Our brain doesn't know the difference from perceived fear and actual fear. Perceived fear can send our brain into the same fight or flight path as an actual fear driven situation.

As I continue to heal this herniated disk in my neck, I've decided to become curious about pain and learn what I can do differently when I experience it. I just finished the book Why I Hurt by Adrain Louwe. In all my 19 years of having a neurological illness, it's the most game changing and easy to read neuroscience based book about pain I've ever read.

They say that knowledge is power. Knowledge is also freedom. Understanding how the brain responds to pain, or even the fear of pain is helping me to better manage both my injury and my illness.

As a person who is passionate about wellness, it got me thinking about the role fear plays in our weight loss journeys. It's why for several years I got in my own way while trying to lose weight for the gazillionth time.

Change is downright uncomfortable. I prefer to hum along in my nice and cozy comfort zone. What makes me really uncomfortable is unpredictability. That's why it was easier to stay 40 pounds overweight than it was to lose the weight. I knew how to be tired. How to be sad. I knew what it felt like to have no energy. To box myself in. To avoid the hard. To limit myself. And I sat in those feelings like toddler running around in a dirty diaper, uncomfortable yet not quite ready to be changed.

I feared what my new life would look and feel like and what I'd look and feel like (but it feels oh so much better than I ever imagined). I feared losing friends and gaining friends (and both happened). I feared people would judge my efforts or give their two cents along my journey (and they sure did). I feared that I wasn't disciplined enough (turns out it's not so much about discipline as it is consistency). I feared I'd mess up (and of course I did). I feared that I'd lose the weight and gain it back (#reallifehappenssometimes).

These fears are real, but they don't have to stop us from reaching our goals.

The thing about fear is that it's all about perception. If you asked me to hold a snake I'd be terrified (not sure I'd do it by the way) but many reptile lovers do it every day. The snake is scary depending on how we view it. It's the same with weight loss.

We must change our mindset in order to reach our goals. Because if we are afraid, the brain starts sending out S.O.S. signals and we are unintentionally blocking our own process. Our brain goes into self protection mode and will send us back to our old habits because they feel better. The cool thing is that the choice is ours. We get to choose how we see the journey and how we view ourselves along the way. We hold the power.

Once I started viewing my pain in a different way, moving my mindset from victim to victor, I was filled with a sense of peace.

I've been working with an awesome PT to help me to push past my fear of pain. Until I'm willing to push through past it, I won't be able to move forward. I'm realizing that I'm fearing a perceived fear. I'm fearing the "what if" and that's super unproductive (but a natural reaction).

That's why it's important to focus on the day at hand. Not what you looked or felt like in the past. Not how far you've fallen. Nor how far you have to go. Just today. Just the next meal or movement. One healthy choice at a time. Instead of fearing the future we can embrace the unknown.

I am working on saying "God, I'm open to what you put in my path today." Keeping my mind and heart open to change. Replacing the "F word", from "fear" to "faith". Faith in myself. Faith that change is possible. I also want to be grateful for my current circumstance, no matter what phase of life I'm in. Gratitude also brings about peace and reminds me that my life is abundant.

The choice is yours. Make a choice. Commit to the choice. Continue with courage.
Hugs & friendship,
Tara

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