The Lyme Diaries: Kristen’s Story

Like so many of my closest Lyme friends these days, I met Kristen on the wonderful world of Instagram. For me, Instagram has been such a wonderful place to connect with others who are navigating this crazy world of illness and healing, and I am so grateful for the support system I’ve found there.

Kristen writes a blog called The Lethal Lymie , and I encourage you to check it out if you’re interested in learning more about her story, treatment plan, and especially her time at the Sierra Integrative Medical Center, where she has been in intensive treatment for the past few weeks. Even though Kristen and I haven’t spent a lot of time chatting, I have learned a lot from her journey, and am thrilled to be able to share some of her path toward healing with you.

X, K

First Name: Kristen
Age: 30
Gender: Female
Where do you live? Tennessee, but I’m a New Englander at heart

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When/Where do you suspect that you contracted Lyme?

May 2011 from a tick bite while camping in Arkansas. However, the tests showed I had it prior to this tick bite.

When did you first begin to feel ill or start to notice strange symptoms?

My symptoms began 3 days after the tick bite in May 2011 when I started my 2 weeks of Doxycycline. What I thought was a reaction or sensitivity to the medicine, was really a Herxheimer reaction.

What were they?

Daily migraines, joint pain (knees, elbows, wrists), weakness in knees and ankles, lower back pain, fatigue, irritability/moodiness, depression, fits of rage, nausea, sensitivity to light and sound, eye pain, finger and toe numbness, skin sensitivity, muscle weakness, jaw pain, ringing in ears with pain, teeth/jaw pain, migrating pain all over body, and neck stiffness.

How many doctors did you see before reaching an accurate diagnosis?

The first Lyme test I had came back positive, so I knew at that time that I had Lyme. I did see an Infectious Disease doctor a month later to follow up on all my symptoms. He tested me again, the test came back negative, and he told me that I didn’t have Lyme, and that my original positive test was not accurate. I saw a LLMD a couple months later and started treatment.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?

No. I am one of the lucky ones.

What are the main symptoms that you experience currently?

Fatigue, joint pain (mostly in knees and shoulders), migrating stabbing pains, weakness, brain fog, memory loss, difficulty concentrating, speech problems, depression, light and sound sensitivities, jaw pain.

What does your treatment regimen look like?

After being on oral antibiotics from August 2011 until December 2013, I am currently getting treated at Sierra Integrative Medical Center. I am no longer taking over the counter or prescription drugs. I am getting 4 different treatments via IV and injections at SIMC, as well as changing my diet to gluten free, sugar free and focusing on cleaning out my body and ridding it of all toxins.

How much do your symptoms prevent you from living a normal life?

A lot. The fatigue really did me in. I think that was the main cause of my depression. While working in sales and marketing, depression is not the best thing to be carrying around. And then there’s the fatigue. Having to wake up, shower, dry my hair, put on make up, and get dressed, I was done for the day before I even left the house. Then having to fake it. Putting on a happy face and surviving another day was completely draining. All I wanted to do was crawl back into bed and sleep forever. On top of that, I would have the pain. Pain in my head all the way down to my feet. Looking back, I’m really not sure how I made it this far. I’m so grateful for my loved ones. I have recently quit my day job to focus on healing.

What do you like to do in your free time and how is this different than before you were sick?

I like to lay in bed, in a dark room, with my husband and two dogs and watch movies. Before I was sick I was very active. Working two jobs, working out 5 days a week (cardio and weights), cooking yummy delicious meals, taking the pups for walks, hanging out with friends and family. I pray and hope that I can do all those things again without feeling like I’m dying.

What do you want people to know about Lyme?

I want everyone to educate themselves before it’s too late. I want them to know that Chronic Lyme does exist, and it is an invisible illness. I want them to know that 2-4 weeks of antibiotics will not cure Lyme, the testing isn’t accurate, ticks are not the only carriers of Lyme, and most doctors don’t know anything about chronic Lyme. And if they do get a tick bite, they need to see a LLMD to make sure they are ok. I wish everyone would watch the documentary “Under Our Skin”.It was a huge eye opener for me when I was first researching.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?

My relationship with God has been strengthened and I will always be so very grateful for that. I have learned a lot about myself and others and I have learned about compassion. I have learned to appreciate the little things. And I am so thankful for the friendships that I have made along this journey. I have met some very strong and inspiring people, and I hope to help others as they have helped me.

xoxo
Kristen

Liebster Award

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I am so excited to have been nominated for the Liebster Award this year. The Liebster Award is given to up and coming bloggers as a way to help honor their work on the internet and also to help bloggers and readers to discover new blogs. Liebster is a German word and means, sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. Seems like quite a compliment to me! If you’re nominated for the award, you are asked to answer several questions about yourself and then pay it forward by nominating a handful of other new bloggers. It’s all about building a community and connecting with others, which is one of my favorite things to do, so naturally I am thrilled to participate.

I was nominated for this award by Megan over at The Recipe For Healing. If you aren’t familiar with her recipes, I suggest you acquaint yourself because she has some amazing creations on her blog and Instagram page (@therecipeforhealing). A few years ago, she used the GAPS Diet to heal herself from a nasty Lyme Disease infection and hasn’t looked back. Her dedication to clean, whole, and healing foods has definitely been inspiring to me on my own road to recovery. Below are the questions that Megan asked me to answer along with my responses:

1) How did you eat before you decided to change your diet?

I have always been a relatively healthy eater and was lucky to grow up in a home with many home cooked meals and few preservatives. Since I played competitive soccer from the time I was 10-18, I was always aware that what I put into my body would be used for energy later on, but as with most people at the time I was lured by foods that I thought were healthy, but were actually often packed with chemicals and preservatives and were void of healthy fats.

For many years I believed that fat was the enemy, which is totally wrong thinking. During and after college, I went through a period where I ate relatively little animal fat or meat. I thought that this was a healthier way to live, and even though I was eating lots of fruits and vegetables, I was lacking in what I believe are two essential foods groups for my body type- healthy fats and animal protein.

Post college, I became more and more dependent on sugar and caffeine as I became more and more sick with an unidentified illness (which years later was finally diagnosed as Lyme). I would reach for a piece of candy, coffee, or tea when I became stressed at my fast-paced job, and since my adrenals and thyroid were a mess due to the effects of Lyme, I truly depended on these things to help me make it through the day.

After I became so ill with Lyme that I had to move back home to Texas to live with my parents in May of 2012, I knew that diet was one of the first things I wanted to address. I had been living off of Thai takeout and decadent brunches for months (okay let’s be real- years), and the sharp contrast of clean, home-cooked meals that my parents fixed me were a dream. It wasn’t long before I transitioned onto an anti-inflammation diet that consisted of a limited assortment of fish, vegetables, and fruits, and this is where I was first introduced to ghee, my BFF nowadays. Gluten, dairy, and sugar were prohibited on the diet, but since I had eliminated gluten in 2009 and dairy oftentimes caused tummy aches, I didn’t have much of an issue with adjusting to the diet, other than having to eat fish twice a day, everyday for several months. Basically, the rest is history- I’ve been eating organic, clean meals since August of 2012 and am hooked.

2) What are your favorite foods to eat, cook and bake? Have you always enjoyed being in the kitchen?

My favorite foods to eat are probably baby back ribs, fish, and sweet potato fries. I’ve been fighting off some candida recently and have had to eliminate the sweet fries, and boy am I missing them! The foods I probably eat the most are eggs, hamburgers and lamb burgers, steamed or raw green beans, and all types of assortments of coconut flour biscuits and muffins. I also try to consume at least one cup of bone broth per day and when my tummy isn’t in knots, I can eat my weight in hummus with carrots and celery.

Just to be clear, I am currently not well enough to cook for myself, and so most all of my meals are prepared by either my dad or my good friend, Betty, who basically works as a personal chef. I usually come up with the menu for the week and then we take it from there. I can’t wait until I am well enough to get into the kitchen though. I used to love baking with my grandmother, so that’s what I’m looking forward to most.

3) What made you decide to start a blog? What do you wish to accomplish with it?

When I was finally diagnosed with Lyme Disease, I learned a lot about an illness that I had previously discounted as being easily prevented and quite curable. Those two misconceptions could not be further from the truth, and I wanted to be a voice of awareness while also providing a place for chronic illness sufferers to come and know that they are not alone.

4) If you could do/be anything, what would it be? There are no limits.

I would be a completely, 100% healthy individual, and I would travel. Everywhere. I want to live in so many different places that I’ve lost count. One day, I will travel again and live in a place that invigorates me the way that Brooklyn & NYC did when I lived there.

5) Who are some of the people that inspire you to eat clean?

Oh, there are so many. It probably sounds trite to say this, but literally every beautiful and healthy meal that I see posted in Instagram or Pinterest inspires me to eat clean, think up delicious meals, and take pretty pictures of them.

And here are my nominations for the Liebster Award…

Incredible Edibles by Erin M. Harker– I just recently discovered Erin on Instagram (@incredible_edibles) and was immediately drawn to her beautiful pictures. Turns out she’s got the creative recipes to back them up. As if this weren’t enough, she’s got some seriously killer dish ware that I am quite envious of.

Lemons ‘n Lyme– Victoria was actually featured in The Lyme Diaries several months ago, and since then, she and I have kept a running dialogue of our treatment protocols, diets, and gains or setbacks in fighting Lyme. Her blog is one of the first Lyme and healthy food blogs that I discovered and is part of the reason that I felt encouraged to start my own blog. She has some seriously delicious recipes for both paleo and raw food lifestyles, and she also shares the same heart that I do for spreading Lyme awareness. You can find her on Instagram and Facebook too.

Plateful Paleo– I’ve been following Rachel on Instagram (@platefulpaleo) for several months, and though I don’t know her personally, I always enjoy her posts of beautiful and well-thought out foods. She’s also from Houston, as am I, and I love to see what foods and paleo-friendly restaurants she finds in this city. Her blog has some seriously delicious recipes, so check her out!

My questions are:

1.) Why did you choose your particular diet plan and what health benefits have you seen from it?

2.) What inspired you to start your blog and what is your favorite part about blogging?

3.) What foods do you eat most often?

4.) What is your favorite “cheat food” or comfort food?

5.) What do you want your readers to know about you? (It can be anything)

December: Neuropsych Eval & Holidaze

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In my post from a few weeks ago, The Pain Game, I mentioned that I had regressed in a few ways and that my pain level in particular had been affected by some events that took place in December. I do realize that we are now almost halfway through April (how did that happen?), and I had intended to post a summary of events much, much sooner, but life with chronic illness does not always allow the luxury of planning ahead.

So, at last, here’s the story…

In mid-December I completed a full neuropsychological evaluation to measure my cognitive function. The ultimate goal of the evaluation was to have an additional form of hard evidence proving that I am and have been unable to work in any capacity since May of 2012. At this point I’ve lost track of how many times I’ve been denied disability benefits by both social security and my private disability insurance company, and this test is one of the things that my lawyer insists will help me win my case.

For those of you who aren’t familiar, a neurophsyc evaluation is a comprehensive oral and written exam used to test a “subject’s cognitive, motor, behavioral, linguistic, and executive functioning” (for those inclined to read more, check out this article via Medscape). There are various degrees of testing and the length of test time can range from anywhere between 2-3 hours to around 10. During the evaluation, the facilitator asks simple questions to measure things like short term memory, word recall, analytical skills, simple math skills, vocabulary, and even the patient’s emotional well being, such as whether or not the patient is depressed, anxious, etc. It’s usually preferred that the testing be completed all in one day, but there are certain patients who require multiple, shorter sessions, and this was the case for me. I had planned to come in for 3-4 hours for two consecutive days, but my body basically shut down after only 2 hours of testing on the first day. By the sheer grace of God, and after a day of rest in between, I was able to return to complete the remainder of the evaluation, with a little help from a fully reclined Lazy Boy, a microwaveable heating pack, an ice pack, and a mom who answered many basic questions about what I am able to do on a daily basis, etc.

I left the doctor’s office feeling drained, teary, and in an escalated state of pain, which was an effect of my mental over-exertion. Nonetheless, I felt accomplished for taking care of what I needed to and was hopeful that I would recover quickly before Christmas, which was only a few days away.

Fast forward to a few days after the evaluation…

I was feeling better and was slowly regaining my strength, but I was still extremely fatigued and in more pain than I had been for several months. And even though I was excited about the holiday season and having loved ones in town, the heightened activity level around the house was hard on me during a time when I really needed total stillness and quiet to recover from the pain and fatigue.

If you aren’t familiar with the type of pain that Lyme has caused for me, and for many others for that matter, you can refer to my post, The Pain Game, for more details. Also, for the readers who do not struggle with a chronic illness, I want to explain what I mean when I say that I was ‘extremely fatigued’. It’s not a normal fatigue that a nap or a few days of rest will fix. It’s a deep, aching, all-encompassing type of fatigue that cannot be helped no matter the amount of sleep or rest. For me, fatigue is a state of being, but when I become severely fatigued from over exertion, I become weepy, achey, and largely feel as if I’m going mad. Depression isn’t something that I have struggled much with during the course of my illness, but if I have my days of being down in the dumps, it’s most likely because I’m so tired that I can’t think straight. During these times of extreme fatigue, I effectively turn into a small child who cries dramatically, and sometimes uncontrollably, because they haven’t developed the ability to communicate, but rather, my ability to communicate has been engulfed by fatigue. Several months ago, I ran across this article about what the writer describes as, ‘crushing fatigue’. To this day I have not forgotten the honest and effective words she uses to portray what fatigue feels like for the chronically ill, and if you have a moment, I encourage you to read it.

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Needless to say, the holidays were considerably less enjoyable in this state. Due to my level of fatigue, sensory overload was at an all time high, causing every opening door, sneeze, conversation, or running dishwasher to irritate all of my senses. Despite all of my hopes, I was not in a great place, and on Christmas day I locked myself in my parents bedroom, where the noise from cooking and chatting was minimal, and cried uncontrollably for two hours. I still don’t fully understand why, I just remember sobbing to my mom, saying, “I am just SO tired”.

It’s been a few months now, but I still don’t feel as though I’ve recovered from December and the neuropsych eval. My level of pain has been dramatically effected, and I never saw a sharp decrease in my pain level the way I had hoped. And in case you’re wondering if I’ve won my disability case yet, the answer is, no. Sigh. But one day at a time.

“So don’t worry about tomorrow. Tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34 NIRV)

XX, K

How To Have a Less Toxic Nail Polish Addiction

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If you know me well or follow me on Instagram, then you know that I have a not-so-mild obsession with nail polish and nail art. What you may or may not know though, is that nail polish is essentially a small bottle of chemicals that have easy access to your bloodstream once applied to the nail. Not to mention the brain cells it kills with toxic fumes! So now your next question is- Isn't this a conflict of interest for your chemical-free, natural, clean lifestyle?

Yes, I concede that it is, however, it is one that I will allow for two reasons: 1.) For a very long time, painting my nails was literally the only creative outlet that I could take pleasure in, and it helped to keep me sane and escape my world of pain and sickness for a short time, and 2.) It makes me happy, and anything that makes me happy is worth doing (within reason, of course), I figure that whatever damage the nail polish toxins are doing are being counteracted by the happiness I feel when I look down at my nails and see something prettily painted upon them. Judge if you want, but everyone deserves to have a guilty pleasure or two, and painting my nails is mine.

Even though most popular brands of nail polish are in and of themselves quite toxic, the polish world has made much positive progress in creating less toxic polish formulas over the past few years. New brands of polish are popping up everyday, and indie nail polishes are on the rise. Nowadays there are more options than ever, and you can even buy vegan or water-based nail polish with all natural ingredients, which are virtually void of toxins and are even safe for the minis in your life.

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Before we get into my recommendations for leading a clean nail polish life, let’s cover a few basics…

What does 3 Free, 4 Free, and 5 Free mean?

For many years, most nail polish companies included three very scary ingredients in their formulas: formaldehyde, toluene, and dibutyl phthalate. The combined effects of these three ingredients have been known to cause reproductive issues, disturbances in the endocrine system, nervous system impairments such as dizziness, fatigue, and headaches, and have even caused cancer in lab rats. You can learn more about these chemicals here, but suffice it to say that you don’t want these toxins to be absorbed into your blood stream (heads up: toxins can enter straight into your bloodstream through your nail bed). Luckily, most big nail polish brands like OPI, Essie, Butter London, China Glaze, and SOPI have removed these three toxins, and therefore, such polishes are referred to as ‘3 Free’, meaning they are free of the three big nasties.

But even if a polish doesn’t contain these three dangerous toxins, you can bet that most contain all kinds of other harmful chemicals, and some brands have taken it a step further by removing formaldehyde residue (4-Free) and camphor (5-Free). This article in Slate describes some of the hurdles that still exist, even in these less toxic brands of nail polish.

So now that I’ve taken all of the fun out of painting your nails, let’s get into a few very basic rules that I try to live by when it comes to my polish habits.

1.) Only use nail polish brands that are 3-Free or higher

I’ve made it a personal rule that, moving forward, I will only allow myself to purchase polish brands that are 4 Free or (preferably) 5 Free, but since I have a boat load of 3 Free polishes (hello, Essie), I do still allow myself to use them. You can bet that I threw out all of the polishes that weren't at least 3 Free though, because, well… formaldehyde. Personally, my favorite brands right now are Julep (4-Free), Zoya, and Deborah Lippmann (both 5-Free). If I'm feeling really dedicated then I go with an organic line like Mineral Fusion or Karma Organics that can be found at your local Whole Foods.

Psst… This site is a great resource for checking out the level chemical contaminants in different nail polish brands.

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2.) Replace your traditional alcohol or acetone-based nail polish remover with a naturally based one

I’m sure that by now most women know that acetone is not only terrible for your nail health, but can also be harmful to your general health. But even most non-acetone polish removers are loaded with their own toxic chemicals. Luckily, there are lots of other options out there today for the health conscious consumer. My nail polish remover of choice is by Karma Naturals, it may be more expensive than your typical alcohol- based nail polish remover, but it lasts about 10 times longer, plus, instead of stripping your nails of the moisture they need, it actually replenishes moisture as it gently removes polish. I will warn you that it requires a tad more elbow grease than what you may be used to, especially for those who use acetone, but there’s no doubt that with a bit of effort you’ll have a much healthier nail as a result of ditching your old remover. I bought this bottle on Amazon almost a year ago, and it’s still about 1/2 full.

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3.) Proper ventilation

This is probably a no-brainer for anyone who’s ever walked into a nail salon, but proper ventilation makes an enormous difference. Turn on a fan, open the window, make sure to paint to your nails in an open space instead of a smaller closed off bathroom. And for goodness sakes, ladies, try not to get too close to that open bottle while applying your polish, the smell alone could knock you out.

4.) Try not to let the polish touch your skin, and/or clean up quickly upon application

Just as nail polish toxins can seep into your body through your nail bed, they can certainly be absorbed by the skin, so make sure to use your toxin-free remover or a hot bath to remove any excess polish that has gotten onto your skin or cuticle area.

With these four easy rules, I hope that you feel a bit more comfortable, or at least less guilty, about partaking in a potentially toxic habit. Good luck ladies, now let’s see those manis!

XX, K

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The Lyme Diaries: Julie’s Story

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It’s been a while since I’ve shared a new story in The Lyme Diaries, which is mostly because I took a little break from writing, but is also because I wanted to vary my content a bit more. Regardless, I’m happy to share this next story in the series, which is brought to you by another Lyme blogger named Julie, of Just Julie Writes. Julie is a Christian and is quite open and honest with the role that her faith plays in her healing process, her writings are eloquent and honest, and I encourage you to check out her work.

Her story is yet another powerful reminder of resilience and the powerful will to survive that each of us innately has deep within, even in the most bleak and trying of circumstances.

Be inspired. Xx.
K

First Name: Julie
Age: 53
Gender: Female
Where do you live? Fort Wayne, Indiana

When/Where do you suspect that you contracted Lyme?

My doctor suggested it as a possibility in January of 2012. He’s a family practice physician and chiropractor.

When did you first begin to feel ill or start to notice strange symptoms?

I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues. Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir. When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.

What were they?

The worst symptoms included: ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach, and dental pain.

How many doctors did you see before reaching an accurate diagnosis?

If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician. If you start with October of 2011, it would be 2: the emergency room NP and my LLMD.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?

It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not. I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012. A year later we discovered that we had mold in our home and remediated our entire home. I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease. Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment. The treatment of Candida has been as difficult as that for Lyme or mold!

What are the main symptoms that you experience currently?

Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue. The other symptoms noted above persist as well. The WORST SYMPTOM by far is that of seizure-like episodes! The first episode happened one month after the onset of viral hepatitis. Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics. Seizure attack episodes thus began around April of 2012 and have gradually worsened since then: generally up to 4 hours per day! If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell.

What does your treatment regimen look like?

I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions! I have maintained an increasingly and very strict Candida and mold-free diet for the past year. Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)

How much do your symptoms prevent you from living a normal life?

My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights. I have not attended our church in about 8 months as it is a water-damaged building. Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening. I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year. Yeah God! Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try! After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years. I miss working!

What do you like to do in your free time and how is this different than before you were sick?

As tolerated, I blog in the middle of the night on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness. I am grateful to have published an eBook this past October entitled: Hope Beyond Lyme: The First Year. In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk. A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at: Trinity Jewelry By Design.

What do you want people to know about Lyme?

Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?

I don’t know how anyone can recover from this difficult illness without two things: 1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey. He is our true source of hope! When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame. Sharing my faith with you is my reassurance that this experience won’t be wasted! I welcome your thoughts and would love to meet you through my blog (Just Julie Writes) or on Facebook at: Hope Beyond Lyme.

The Pain Game

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For me, the pain started in 2010, and it came as a simple, yet inexplicable, case of shin splints and plantar fasciitis. It wasn’t pleasant, but it was far from debilitating. Then, in Sept of 2011, I was struck rather suddenly by an almost unbearable case of what my ENT diagnosed as TMJ. It wasn’t long after the TMJ onset that I began to notice a strange and terrifying new pain that engulfed my entire body and left me wheelchair bound within several months. To put it quite simply, pain has been a big part of my life since Sept. 20, 2011, and not a day has gone by since then that has not been characterized by some sort of pain, ranging from discomfort to complete agony.

I’ve experienced bone pain, joint pain, muscle pain, shooting nerve pains like sciatica, headaches that were so bad I couldn’t lay my head down on a pillow, and deep body aches, but by far the most pervasive pain that I experience is a persistent-body-wide-nerve-type-pain. It’s a pain that is heavy, overwhelming, constant, and quite debilitating. Even though I’ve been experiencing this pain for almost two years now, I still struggle to put what I am physically feeling into words. The best description I’ve been able to formulate is this: it’s as if every nerve ending in my entire body is inflamed. Any movement (even, or especially, walking) causes further irritation, and too much ‘activity’ causes damage that could literally take months to recover from, if I am able to recover at all.

At my very lowest point in the pain game, I could hardly walk to the bathroom and spent all of my time laying on the couch wrapped up burrito style in an electric blanket set to the highest temperature. I could not fetch my own meals or do anything other than walk to the bathroom and back a few times a day, and sometimes even that was too much. This was my life for several months until I was finally diagnosed with Lyme. Once I started treatment, a beautiful thing happened and I began to see a gradual lift of my pain. I was still extremely restricted and had to be careful not to push myself too far, but with time I was able to walk into the doctors office and get all of my meals by myself without a problem. I could walk outside and get the mail or pick some flowers for the coffee table. It was such a luxury, and I felt quite sure that I was winning the pain game, I was so hopeful that I would soon be saying goodbye to the wheelchair for good.

But last June all of my hopes were dashed when, after a few weeks of ‘doing too much’ (i.e. having guests in town and traveling to an out of town doctor appt), the pain came back with a vengeance. Literally overnight, I went from making good progress to taking ten steps back in the pain game. In the preceding months I was able to regain some of my lost progress, but I never completely made up for the ground I lost. Then, this past December, I had another string of offensive events (which I will write about later), that set me back even further, leaving me in the state that I am currently in, glued to the couch and once again quite dependent on my wheelchair. And suddenly, I’ve fallen back into the grips of this evil game, and I can’t figure out how I’m going to gain the advantage so that I can win.

I wish this post could be about a secret, magic bullet potion I’ve discovered that has caused my pain to cease and desist, but it’s not. Believe me, I’ve looked long and hard for something that would help, I’ve scoured the internet, joined message boards, and have seen doctor after doctor. I’ve tried: loads of natural anti-inflammatory herbs like ginger and curcumin, physical therapy, massage, narcotic pain killers, NSAIDS, energy work, cranial sacral therapy, SSRIs, chiropractic work, and more. Nothing has had a lasting effect, in fact, many of these modalities have only made me worse.

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So, what is a girl (or boy) to do when the pain game seems to be winning, despite all of her (or his) efforts against it? The simple answer is that I don’t know, but below are six suggestions that have helped me maneuver through the darkest days of the pain game.

1.) Epsom salt detox baths

If there is one thing that I know is effective in easing my pain, this is it, and these days I take two Epsom salt baths per day just to keep the pain level tolerable. The magnesium in the salt soothes sore and aching muscles while the salts work to pull out toxins. The hotter the water gets, the more relief I experience, but for those who cannot tolerate the heat, even a lukewarm or cold bath will bring some relief (I have had my fair share of cold baths due to sensitive skin).

If you have any baking soda, hydrogen peroxide, maca, bentonite clay, rosemary, mustard seed, ginger, or green tea lying around then feel free to add one or two of these things to your bath as well, as all of these things will help to draw out the toxins, which will help to calm inflammation and therefore reduce pain. Just be careful not to add too many things at once or you could end up with an unpleasant detox reaction (i.e. nausea, dizziness, racing heart, lightheaded, etc).

I’ve found that reducing stress and relaxing my body also helps me to cope with the physical pain I am under, and I personally love to light a non-toxic candle or two and spritz my bath with a lavender essential oil to bring some added peace to my aching body and busy mind.

2.) Get to know your essential oils

There are many wonderful brands of essential oils on the market today that are loaded with therapeutic and healing benefits. My go-to brand of choice is Young Living, but other brands like DoTerra and Well-Scent are also wonderful, just make sure to do your research before jumping in with a brand I’ve not mentioned. Many essential oils on the market today are laced with nasty chemicals and fragrances, the best oils are more pricey but are so pure that they can safely be ingested and even used in lieu of conventional medicine like antibiotics.

I use lots of different oils for different ailments, but I absolutely cannot live without peppermint oil. Peppermint oil is particularly useful for joint pain, stomachs aches, and headache relief. There are also other oils that help with pain (PanAway) and stress relief (Stress Away, Peace and Calm, Lavender), and adding these oils to your daily routine can really help to ease discomfort while also calming the mind and spirit.

PS- If you’re interested in purchasing oils or just learning more about them, feel free to contact me.

3.) Practice gratitude

This one is simple, but oh-so-difficult during those times when you’re feeling down about the agony that your pain is causing, but a simple change in perspective can make all the difference. If you’re in a particularly low place and are finding it hard to muster gratitude for anything at all, start with the tangible things that you can see and state out loud what you are thankful for. For example, ‘I am thankful for my bed, I am thankful for clean sheets, I am thankful for a roof over my head’. You may feel crazy as you speak these things out loud, but I promise that if you practice this long enough, you’ll cultivate a greater sense of gratitude over time that will allow you to appreciate the small things while also bringing a sense of rest and contentment to your life. And remember- there is always, always, always something to be grateful for, sometimes you just have to try a little bit harder to find it.

4.) Expect something good to happen every day

Did you know that speaking happy, healthy thoughts can actually change the molecular makeup of your cells? Replacing scary thoughts with empowering, positive expectations can literally contribute to your physical healing. So learn to expect the best instead of bracing for the worst.

5.) Have a good cry

When all else fails, allow yourself a good cry, and if you’re in a particularly low place then pick up the phone and use your ‘phone a friend’ lifeline to get some support and encouragement from a trusted comrade. Just be sure to choose your lifeline carefully- you want to select someone with a compassionate heart who will listen and lift you up, not talk over you and contribute to any negative emotions you may be feeling at the time.

6.) Remember that you are not your illness

This one is important- No matter how bad things get, always remember that you are so much more than your illness, more than your pain. There is a beautiful, intelligent, and lively person buried under all of the physical ailments, and even though you may not be able to do all of the things you used to do, you are still you.

Instead of dwelling on the things you cannot do, try to focus on what you can do by looking for new hobbies and interests that don’t focus on your illness or pain. Some people may be able to go for a short walk or take a painting class, but if you’re not quite to that place yet (I certainly am not), then try embracing something that you are comfortable with like painting your nails, sketching, or knitting. Just do something, no matter how seemingly small it may be, to get out of your head and free up your soul to live, breathe, and dream again.

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In summary, pain in and of itself can be depressing, but living in a body where chronic pain is a mainstay is a downright battle every single day because you don’t know when or how or even if it will end. But we have to keep hoping, and wishing, and praying for those good days to come, and in the meantime, we must remember to be gentle with ourselves and strive to find joy and contentment in each passing day. As Tom Petty says, ‘the waiting is the hardest part’, but what we can and must attempt to do is learn to wait well. There’s no denying that pain has changed me, but it’s my choice whether to let it change me for the good or the bad.

Wishing you the best in your battle against the pain game.

X, K

Birthdays + Lemony Coconut Cupcakes with Strawberry Frosting

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A few days ago, I turned 29 and entered into the final year of my twenties. How I have gotten ‘so old’, I have no idea. Birthdays are one of those things that remind you that time is indeed moving forward, that you are in fact growing older, and that the world hasn’t stopped turning just because you’ve been on the couch for two years.

In many ways, I feel like my life stopped when I turned 27, as this was the point in time that my symptoms became increasingly more debilitating and it became evident that whatever was going on with me was clearly very serious. I still feel as though I pressed the pause button on my life in 2012 and have been living in an alternate world of pain and suffering ever since. In my world, every day is scarily similar- marked with some degree of physical and emotional pain and trauma. I have a hard time remembering what month or year it is sometimes, and my tv show schedule is the only reason that I can keep up with what day of the week it is (Sunday means Girls and The Walking Dead). It’s a little bit like the movie Groundhog Day, you keep doing different things, trying different diets, herbs, supplements, and natural therapies, going to new doctors, drawing blood, running tests, and drawing more blood, hoping to trigger a change, but each morning you wake up to the same song on the radio and have to find a way to relive the day one more time.

There are times, and sometimes days at a time, when I feel like I have lost so very much to this disease- my job, my home, my independence, my social life, some friends, and lots and lots of time in which I could be doing the things I enjoy and accomplishing goals. But at the same time, I have to acknowledge all that I have gained. I’ve gained deeper relationships with my family and the close friends that have been so loyal and supportive throughout this mess. Most marriages have not had to deal with the painful and complicated level of suffering that my boyfriend and I have had to walk through for the past three years. You cannot imagine the heartache and guilt associated with a relationship in which one partner is so unimaginably ill unless you have walked through it yourself, and even though it’s been incredibly difficult, it has brought us closer and has taught us a lot about each other’s character. For this I am grateful. As a result of my sickness, I’ve also gained a greater degree of empathy for others, for which I am thankful and am also quite certain that I would not be able to understand without having gone through such a struggle with my own health. On a more personal level, I’ve learned to trust my instincts and my intuition, and I’ve also learned that I can endure far more than I ever thought possible. I’ve come to understand a deeper revelation of the God’s love for me, and I’ve made some precious new friends.

Even though it’s been painful, and I certainly would not have chosen this for my life, I cannot deny that my life has been enriched by this disease. It has taken a lot, but it has also given. And so, here is to my 29th year and hoping that it brings much healing, restoration, and appreciation for myself and others.

Now, let’s eat some cake!

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In the history of my life I would never have chosen any flavor of cake or ice cream over a good dark, rich, chocolate, but thanks to Lyme, my taste buds have changed. I’ve also never really been a fan of lemon-flavored desserts, but like I said, my taste buds have changed, and I’ve now joined the ranks of those who prefer a fruity dessert to my former love, chocolate. My main goal for my birthday dessert was to create something that fulfilled my dietary requirements (paleo, no sugar), was light and easy to digest, and was preferably pink (What can I say? l’ll always be a girly girl). For these reasons, I came up with the idea for these coconut-flour-based lemon cupcakes with a light strawberry frosting. The results were quite delicious, and all of that pink sure did make me happy.

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Lemony Coconut Flour Cupcakes

Ingredients:
5-6 large eggs
1 C coconut milk
1 tsp vanilla extract
2-3 Tbsp fresh squeezed lemon juice
1 Tbsp lemon zest
1 C coconut flour
1/4 tsp baking soda
1/4 C ghee, melted (omit if you like a bit of a dry cupcake)
Stevia to taste (if using granulated stevia, stir into a tablespoon or two of warm water to liquify granules so that stevia spreads evenly throughout cupcake batter)

Directions:
Preheat oven to 350 degrees F. Beat eggs, ghee, coconut milk, stevia, vanilla extract, lemon juice, and lemon zest together until smooth and creamy. In a separate bowl, combine coconut flour, baking soda, salt, and mix well. Add dry ingredients to wet ingredients. Beat until smooth and creamy. Taste and adjust for sweetness if needed. Spoon batter into (coconut oil) greased cupcake tins. Bake 15-20 minutes or until golden brown and cooked all the way through.

Strawberry Coconut Frosting

Ingredients:
1 C coconut butter
2 C fresh or frozen strawberries
1 tsp vanilla extract
Shredded coconut, I prefer raw, for cupcake topping
Stevia to taste (dissolved in a Tbsp of warm water)

Directions:
Purée strawberries and whip into coconut butter. Add stevia and vanilla extract and whip into mixture. Use to ice cake or cupcake and top with shredded coconut and/or a slice of freshly cut strawberry.

Coconut Flour Bread

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I’ve had a bit of a rough week, and when I feel terrible I tend to crave things that are more likely than not to make me feel worse- can we say french fries and rice pasta? So in an effort to keep myself from eating all of these starchy, high carb foods that Lyme flourishes off of, I decided to try out a new recipe for coconut flour bread. I found a recipe with relatively few ingredients on Lexbake’s blog, and then my friend Betty, who cooks for me on Wednesdays, made a few tweaks to make the recipe even better.

I have to say that I was pleasantly surprised by this bread, it’s not too sweet, but does have a hint of sweetness, probably from the coconut oil. If you wanted to make a more dessert type bread and you’re not watching your sugar intake, then feel free to add a bit of honey or stevia to sweeten it up. I haven’t tried using the bread to make a sandwich, but it sure is tasty with some pumpkin seed butter spread in top, and I can think of about ten other things that I want to try with it. Endless possibilities.

In other news- I’m currently working on a new post with a treatment update to fill everyone in on my progress, or lack thereof, and I promise that you’ll hear from me again soon(ish).

X, K

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Ingredients:
3/4 C coconut flour
1/2 C virgin coconut oil, melted
1/4 C ghee
6 eggs
1/2 tsp. sea salt
1 tsp. baking powder

Directions:
Preheat oven to 350. Grease loaf pan with coconut oil. Separate egg whites from yolk, and place in two separate bowls. Beat egg yolks until frothy. Beat egg whites until fluffy and voluminous. Combine egg yolks, ghee, and coconut oil in a bowl. Add salt, baking powder, and coconut flour and combine with egg yolk mixture. Fold in egg whites. Mixture will be a thick paste. Push it down into the loaf pan and bake for 35-40 minutes.

Staving off Candida & Hearty Oat Bran Muffin Recipe

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About a month ago I found out that I have a moderate case of systemic candida. I had suspected this might be the case for quite a while because I’ve had body wide itching for over a year now but have never been able to attribute it to a specific allergen or anything else. I had taken a candida test early last fall that came back negative, but the test I took in December came back positive, so here I am, treating yet another chronic infection in addition to the Lyme. I’m hoping that knocking the candida will knock the itching and will also speed up my Lyme treatment, which seems to be moving at a glacial pace, but I guess that only time will tell.

For those who don’t know, candida is a fungal infection that occurs when the flora in the gut becomes out of balance and bad bacteria begins to overwhelm the good bacteria. It has been said that all health starts in the gut, and gut flora is so complex that doctors and scientists still know very little about the multitude of microorganisms that reside there.

What we do know is that a healthy gut contains an 80:20 ratio of good bacteria vs. bad bacteria and is also indicative of proper immune function. However, toxins like pesticides, GMO’s, and antibiotics are all known to severely alter and disrupt proper gut flora, making it immensely difficult to maintain intestinal integrity. Since it’s almost impossible to avoid all damaging contaminants, one really must remain diligent in maintaining proper intestinal health.

Since digestive and intestinal issues have been a problem of mine for the past ten years, I knew that regaining my health in this area was of vital importance to my overall healing journey. Some of you who have been reading this blog for a while probably remember my post about a healing dietary plan called the GAPS diet, which I spoke about here, and I am happy to report that I have gained some weight and am more properly digesting and absorbing my food now. However, with the new candida diagnosis, I decided to refine my diet yet again.

While treating candida, it’s crucial to eliminate ALL sugar, grains, dairy, and starchy vegetables, because sugar is essentially what allows the candida to flourish (starchy foods metabolize into sugar). Even though I eliminated conventional sugar, dairy, and gluten long ago, I decided to follow a bit of advice from the official Candida Diet which requires the elimination of honey, maple syrup, agave, and fruits (with the exception of green apples and grapefruit), rice, and root vegetables (goodbye sweet potato fries).

Luckily for me, oat bran and coconut flour are still permitted on the candida diet, and when I stumbled across this oat bran muffin recipe by Whole New Mom, I knew I had to try them. I modified the recipe a bit, and the results are delicious, just trust me on this. If you’re not watching your sugar intake, feel free to top your muffin with a natural fruit preserve, honey, or nut butter for an added pop.

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Ingredients:
2 1/2 C uncooked oat bran
2 t baking powder
1-2 t salt
2 t cinnamon
2 eggs
1 C water
2 t vanilla extract
2T coconut oil
2 T ghee
2 sm green apples, peeled and cut into chunks

Directions:
Preheat oven to 425 degrees F. Mix dry ingredients together. Mix wet ingredients in a separate bowl. Cook apples in saucepan on medium-high heat until soft. Purée and add to wet ingredients. Stir wet ingredients into dry ingredients. Butter or grease muffin tin (ghee, grassfed butter, or coconut oil), and spoon batter into tins. Bake 10-20 minutes, or until the muffins set up nicely. Top with butter, raw honey, jam, your favorite nut butter, or enjoy them all by themselves!

*Makes about 14 regular sized muffins.

The Lyme Diaries: Shannon’s Story

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You’re too young to be so sick.’

I’ve heard this comment from well-meaning friends and doctors alike, and to a large extent I agree with them, but the reality is that I am this sick. And so are many others with Lyme Disease or any number of other chronic diseases.

This experience has definitely opened my eyes to the volume of young people with chronic illness. I dare you to go on Instagram and look under the hashtag #chronicillness. What you’ll find are thousands of posts from (mostly) young people suffering from one disease or another, whether it be Lupus, POTS, CFS, Lyme, or another lesser known illness, yet our society, to a large extent, knows very little about these invisible illnesses.

I know that it can be confusing to outsiders to understand how the life of a person with chronic disease or invisible illness is so marked with pain when on the outside we ‘look normal’. For the record, I think I look anything but normal- I’ve got dark circles around my eyes and bags under them, despite the amount of sleep I get. I’m pale, paler than this Irish girl should be. My calf muscles have atrophied from lack of use. My face has lost it’s fullness and instead is a bit hollow. I’ve lost weight. I don’t think I look very ‘normal’.

But I know what it’s like to look healthy on the outside while feeling terrible on the inside, it just took a while for my exterior to begin to match my interior. I was sick for a long time before I was really debilitated by my illness, I just suffered through it as best I could. I was always a little bit bewildered when a coworker would call in sick because they had a scratchy throat or a headache. That was every day of my life. Deep down I wondered what it must feel like to really feel well, not just my version of it.

This story comes to us from a new, sweet friend of mine named Shannon. Invisible illness has effected her from a very young age and caused her to miss much of her high school years. Personally, I can’t imagine being a high schooler and going through this illness, I was much too bull headed back then to go through an illness like this with even an inkling of grace, and my heart goes out to those who were much younger than me when they became so very ill.

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Shannon recently started a blog called Lymeless And Lovely, and I encourage you to check it out if you have a moment, she’s a wonderful writer and has an ease with putting her experience into words, as you’ll see below.

As always, I hope that you enjoy this story and that it brings a deeper understanding of not only Lyme Disease, but of the multitude of other chronic illnesses that are becoming more and more prevalent by the day.

XX, K

First Name: Shannon
Age: 23
Gender: Female
Where do you live? Ottawa, Ontario, Canada
When/Where do you suspect that you contracted Lyme? New Brunswick, Canada

When did you first begin to feel ill or start to notice strange symptoms?

In the summer of 2003, while on vacation in New Brunswick with my family.

What were they?

I developed a weird rash all over my body. It lasted 2 weeks and I felt generally unwell the whole time, but then it disappeared. That fall I was missing a lot of school due to feeling sick which was unusual for me. Then in Feb of 2004 I woke up with what I thought was the stomach flu and I was sick from then on.

How many doctors did you see before reaching an accurate diagnosis?

Oh gosh. I stopped keeping track! So many. Gastroenterologists, cardiologists, GPs, dozens of ER doctors on the several occasions I ended up there. So many haha.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?

The first thing I was diagnosed with was probably social anxiety. I had doctors tell my parents I was just afraid to go back to school (ridiculous because I always loved school and was devastated to be missing it).

I was also diagnosed with a handful of random things that didn’t really explain my symptoms in their entirety, or their severity such as acid reflux and ovarian cysts.

I was finally diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2005. At the time, we weren’t aware why I developed POTS (it is usually a secondary condition).

For years we just treated the POTS as best we could, but unfortunately I didn’t notice much improvement in doing this. Finally in 2012 after doing my own research, I got tested for lyme. Between my test results and symptom history I was diagnosed with late stage lyme along with several co-infections.

What are the main symptoms that you experience currently?

My main symptoms are definitely extreme weakness/fatigue and nausea. I black out a lot and sometimes even faint. I also get bad pressure in my head and abdominal pain.

What does your treatment regimen look like?

I’m currently treating with a variety of different herbals and supplements. Herbs to address detox, liver support, kidneys, lyme and co-infections, parasites, and the immune system. I am on binders to help bind the toxins that are released from this process (chlorella and activated charcoal). I am also starting a supplement called CORE that addresses KPU which is an issue a lot of people with lyme have. I take methyl folate and hydroxy b12 as I have the MTHFR gene mutation, and I am also looking into mold toxins and the treatment involved in that.

How much do your symptoms prevent you from living a normal life?

A lot! Up until last year, I was sick but was able to semi function. I could never go to high school full time and couldn’t hold a job, but most days I was able to go out for a couple hours etc. without too much trouble. This last year I’ve been sicker, and have basically been housebound. I was in online courses for nutrition and had to put my schooling on hold because I’m just too sick at the moment. On good days I’m able to go to the grocery store for a bit or to a friend’s house, but on bad days I can’t get out of bed, make own food, or shower without sitting down.

What do you like to do in your free time and how is this different than before you were sick?

Most of my time now is “free time” but unfortunately I’m not feeling well enough to do much with it! Watching movies or tv shows, reading, and when I can, spending time with friends and family. When I was feeling better I really enjoyed baking and cooking, specifically gluten free and allergen free foods!

What do you want people to know about Lyme?

So much! This illness is so misunderstood and I hate that. I was so frustrated by this that I wrote a blog post about this very thing! (Side note from Kayla: This blog post is a MUST read for anyone with Lyme or for those who have loved ones who are struggling with Lyme).

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?

I’ve learned that life is precious and really can change overnight. I’ve learned that unfortunately a lot of the time the people you think will love you unconditionally won’t, but the ones that do make up for it. I’ve learned that it’s the little things in life that hold true value, and I’ve learned to practice gratitude in every way possible, no matter how impossible it can feel at times. I’ve learned that it’s okay to have days where you don’t feel positive or hopeful. And it’s okay to want to give up and it’s okay to cry. We are human. I’ve learned that nothing is permanent. And most of all I’ve learned that those that have experienced suffering and loss also have the greatest ability to show true compassion, empathy, patience and kindness.