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After years of living a limited life with chronic illness, Kacie began to see a new chapter unfold. Tune in to hear how her story turned to hope and healing!

Healing Fibromyalgia & Lyme with Kacie Fleming

Chronic illness has this way of sneaking up on you, doesn’t it? Most of us could admit that the signs were there. Maybe they’ve even been there awhile.

But we keep covering the flashing lights or silencing the alarms.

We push through. We get things done in spite of the pain. Or we tell ourselves “this will pass.”

Until we can’t.

Until the symptoms become just enough to start calling some of the shots. Instead of pushing through, we find ourselves weighing out the costs of simple actions. Things we used to do without giving them a second thought.

Kacie’s story is all to relatable. And it begins with an all-too-familiar thought of “something’s just not right.”

From one diagnosis to another, as her list grew and pills were prescribed, she found herself in another world.

The land of chronic illness. A place where resting after a shower, canceling plans, and eating a limited diet was the new norm.

But her story didn’t end there. She pursued other opinions, holistic treatment, and opened her mind to a completely different approach to healing.

Her story is now one that is full of healing and hope for both herself and others – and she’s sharing her journey of how it’s all been unfolding today on the podcast!

She and I have both embarked on the DNRS program, which we’ll also be talking about during our chat. You won’t want to miss it if you’ve been considering learning more about neuroplasticity!

Listen in….

To listen to today’s episode, simply hit play below or subscribe to the show on iTunes, Stitcher, & Google Play!

 

Connect with Kacie!

Visit her shops: Katya Valera Jewelry | Streetlights at Midnight

Connect on social media: Facebook | Instagram

Is it possible to heal chronic illness naturally? After receiving multiple diagnoses that could have meant living a life defined by illness, Kacie is sharing her story of how hope and healing have been unfolding in her life through treatments often overlooked (or unheard of). Click to listen!Healing chronic illness naturally with Kacie Fleming @kacie_kvFrom diagnoses to hope: Kacie's story of finding healing through methods most doctors might ignore may bring renewed hope to your own story. Click to listen in!

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After spending years chronically ill I began researching the DNRS program as a natural alternative to healing. I've seen great results and am sharing 3 important questions I've been asked - and answering them! Want to know more? Click here to learn more about how the treatment works!

3 Things You Should Know About DNRS

This is not a sponsored post. These opinions are entirely my own and are in no way endorsed by the Dynamic Neural Retraining System.

If you read my post last week, you know that over the course of the last six weeks I’ve been adding in a brand new treatment. And it’s a program that’s, well…outside of the box.

It doesn’t come in the form of capsules. Or an injection. And it doesn’t involve a device, for that matter.

Because this treatment, interestingly enough, can’t actually be seen.

Sure, the information and instructions for DNRS (Dynamic Neural Retraining System) are delivered in the form of a DVD series and a personal workbook. So there’s something tangible you have in hand as you’re learning. But implementing the program involves working on/with your brain.

Which means it’s a lot of internal work.

The techniques presented in this program are based on research surrounding neuroplasticity. Which, in short, refers to the brain’s unique ability to change itself. Wild, right?

So today I thought I’d answer some of the questions that I’ve been asked the most since starting DNRS:

  1. What is DNRS?
  2. How would retraining the brain help current health challenges?
  3. Is it worth the $250+ investment?

These are all questions I’ve asked before starting the program so you’re not alone! Information on healing through neuroplasticity is still relatively new to me, but I’ve been seeing profound shifts begin since starting DNRS.

So how about we just tackle these one by one?

What the heck is DNRS?

As I mentioned before, the program arrives at your door with a set of DVDs and a personal workbook. You’re encouraged to complete the program (which consists of 14+ hours of material) in 4 days in order to get the most benefit, but I’ll be honest: it took me a bit longer. But I gave myself some grace and, as I’ve shared, am still seeing positive shifts in my health.

In a nutshell, the DNRS program aims to first educate you in the science behind neuroplasticity and then equip you with both the tools and techniques to help you repair your limbic system.

I wasn’t familiar with the limbic system prior to this treatment program. So in case you’re like me and your thoughts are starting to drift toward what you’ll be eating for lunch, let’s quickly cover the basics.

The limbic system consists of several parts of the brain including the hypothalamus, hippocampus, amygdala and cingulate cortex. Together, these structures make up the “feeling and reacting” functions of the brain.

Now if the limbic system is impaired due to injury or trauma (whether that’s an infection, chemical exposure, mold toxicity, emotional or physical trauma, etc) it becomes hypersensitive. And in this hypersensitive state it will overreact to even the smallest stimuli that would otherwise be passed over as harmless.

Since our limbic system works intimately with our endocrine, autonomic and immune systems, it inappropriately activates those systems which can end up in a “party” of symptoms we never invited.

The DNRS program gives you a system to implement that will help rewire the limbic system so that it’s once again functioning properly. The treatment you implement includes both daily brain exercises you work on throughout each day and one hour of devoted time of “practice”. Practice each day involves a combination of mild movement, vocal exercises, and mindfulness techniques – all to help restructure the pathways in the brain.

I obviously can’t share exactly what the practice outlines for you to do each day, but something that may be helpful to talk about is the reality that I was very limited before starting this. And even I was able to implement these practices in the beginning. Sometimes I just had to do it in an abbreviated way, such as lying down or sitting during a portion of the daily one-hour of practice.

Want to learn more about the Dynamic Neural Retraining System? After years of treatments, doctors, and way too many years spent home-bound this method is helping me HEAL! Click to read more as I'm responding to my 3 most asked questions about the program.

 

How would retraining my brain help my current health challenges?

Great question! And one I asked over and over again before purchasing the program.

One of my first thoughts upon looking further into the program was that it seemed like everyone was “drinking the Kool-Aid.” But heck, I was desperate. And if  the Kool-Aid actually worked, I couldn’t care less about the modality. I just wanted to be better!

And while I am getting better, this most definitely is not brain washing. (Or sugary Kool-Aid for anyone wondering). There was an important distinction I knew I needed to make early on in the program. As I learned more about the brain and neuroplasticity it became clear I had to treat my brain just like I was treating my body.

My magnesium has been regularly low for years now, which is why my naturopath has been supporting my body’s diet with magnesium supplements. My blood pressure has also been regularly low, so I frequently drank Himalayan salt water to help keep it from dipping too far.

So for me, it was helpful to view my efforts in neuroplasticity retraining as working with the organ of the brain.

As in: utilizing my mind to retrain my brain’s pathways. And while a huge part of this program is working with your thoughts, it’s more specifically working with the thoughts/messages your brain is inappropriately sending.

The aim is to redirect the neurons that are firing incorrectly (i.e. sending symptom and pain signals) so that over time they are no longer wired with the same old pathways. The outcome is rewiring the brain with new, healing pathways so the limbic system can be properly functioning once again. Which results in lessening symptoms!

I’ve heard all sorts of “just think positive” mantras and over these past years of health struggles they’ve felt like a big ball of blame. The message received was “you’re not positive enough, therefore it’s your fault you aren’t getting better.” And I don’t buy that one bit.

Any mindset shifts I’ve experienced (or been able to set in motion) in this program have been a direct result of experiencing tangible healing. Meaning: literally feeling a difference in my brain and body. It’s been like a fog has been slowly lifting. A fog I simply did not invite or entertain. Because believe me, I wanted all of the symptoms and discomfort GONE. 

This program isn’t about just thinking positive, but rather learning how to communicate with your brain to help it reach wholeness. And what I’m finding with each passing week is that I do feel lighter. Even happier, but genuinely so. And it coincides with the healing that’s begun in my brain and body.

How did I decide it was worth the $250+ investment?

First off, I can tell you one thing that didn’t help me decide: a guarantee I would get better. Because there wasn’t one. I knew that just like every other treatment I tried, no one could tell me this would 100% work for me.

But the following things really did help.

    1. A money-back guarantee. This was a first for me. We have shoveled out tens of thousands of dollars, much of which we fundraised, to pay for treatments over the years. Never once have we seen this. If you commit to the program for the full 6 months and don’t see significant improvement, they’ll refund you. That’s quite a statement of belief in their program!
    2. It’s really not that expensive. I probably don’t need to say more after what I just said about “tens of thousands”, right? But in case you need a further statement: $250 doesn’t begin to touch how much my supplements cost us right now each month. If getting me better means being able to go off of those, it’s well worth it.
    3. The research speaks for itself. The more I’ve studied about neuroplasticity through the program (and now after), it JUST MAKES SENSE. Variations of the techniques in this program have been proven effective in so many others. Want to be really amazed? Watch this TED talk given by Dr. Jill Bolte Taylor who suffered a stroke and talks about her experience and neuroplastic healing.

The following contains affiliate links which means that if you purchase something through one of these links I may receive a commission – at no extra cost to you. As a reminder, I only promote things I have personally tried or believe are beneficial. Any commissions earned help me keep this blog running. So, thanks! 🙂

You don’t have to take my word for it. Learn more yourself!

Since starting the program I’ve had a craving for learning more about the brain, specifically neuroplasticity. So I have a running list of the books I’d like to read and recently checked out my first one from our local library by Dr. Norman Doidge, called The Brain’s Way of Healing. I’ve just started and already it’s a fascinating and helpful read! I also plan to read his first neuroplasticity book, The Brain that Changes Itself.

Since watching the TED talk video I mentioned earlier I’ve been eyeing Jill Bolte Taylor’s book, My Stroke of Insight, for a future read also. Because after watching her tell her story I just have to know more!

Finally, of course, the Dynamic Neural Retraining System’s website contains more information about both the program and understanding the science behind their approach. And it’s a great way to check it out more before deciding if it makes sense to purchase the program for yourself. Let me know if you do! I’d love to connect.

Have you read any books on Neuroplasticity? Have you done the DNRS program or something similar? I’d love to hear your thoughts!

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How the DNRS Program is Helping Me Heal

If you’ve been following me here for awhile, you know that here in this blog-space I share the grit and guts of what I’ve experienced in the realm of the sick life. But if you’d like to catch up on my story to understand how powerful the news I’m about to share is feel free to check out this post. It’ll give you a look at what used to be an average day-in-the-life for me. Don’t worry, I’ll wait right here til you’re done…

Ready? Okay.

So a little over a year ago I met a doctor through a friend and my goodness has she been a godsend to me. Quite frankly, I believe she is one of two doctors that has helped keep me alive. Well, them and a nurse who quite literally gave me back my life in 2015.

Through her care I’ve seen some beginning signs of improvement as well as experiencing a much lower # of ER visits (1). But I’ve still been largely home bound. Weak. Frail. Experiencing way too many symptoms to be normal. She was feeling hopeful that by the year’s end I’d see some marked change. And I tried my best to hope with her.

But then I was sent a message from an Instagram friend that told me I needed to check out the DNRS (Dynamic Neural Retraining System) program. She said it had completely changed her life and since our stories were so similar I thought I should at least look into it.

So I clicked over to the website and began to read. My first response was honestly, an eye roll. “‘Retrain the brain’? Do they think this is all in my head? This sounds like another load of positivity B.S. So…I’m outta here.” I replied to the friend with a thanks, but this just isn’t for me. And I thought that was it.

But it KEPT. POPPING. UP.

A few weeks after I said ‘no thanks’ it popped up again. Then a couple days later a friend messaged me about it, asking if I’d heard of it. Call it what you will: a sign from the universe, or God, or my own body/brain trying to send me a message, but I just couldn’t get away from it.

So I looked at the website again. I watched tons of the testimonial videos as well as a presentation by the creator of the program, Annie Hopper. Her story, though different than my own, also held so many similarities. And she confirmed what I knew to be true: this illness is NOT all in our heads. So I softened.

I felt like her heart was compassionate toward others who had gone through what she had. And her incredible story was this: I learned to retrain my brain and I healed myself.

That’s quite a bold statement, no? So I looked at the price of the program and I talked it over with Trevin. A couple weeks later I had the DVD program in hand. It came right after I’d finished running my very first workshop with some of the readers here at Living Grace. The timing felt perfect.

Have you heard of the DNRS program based on the research of neuroplasticity? It's a fascinating program that is helping me heal from years of chronic illness. To read more of my one month update, click here!

I entered the DNRS program with a lot of skepticism.

I just feel like you should know that. It definitely wasn’t as if I bought into this deal right off the bat. But there were some aspects of the research I found online surrounding the brain’s ability to change itself (neuroplasticity) that I couldn’t ignore. And seeing how it had helped so many others similar to me gave me enough hope to give it a shot.

The program is designed to help you rewire your limbic system so that it builds more functional neural pathways. As I learned more about the brain and limbic system in this program, the cause and effect of why I continued to grow sicker or only experience small amounts of relief started to make more sense.

In the DVDs Annie explains that when the brain experiences various forms of trauma, whether that’s viral, physical, emotional or otherwise,  a maladapted stress response can be triggered. Essentially that means that our brain’s instincts to protect us get kicked into overdrive, leading our limbic system into a constant state of fight or flight mode.

And how on earth could I get better if my brain constantly thinks it’s under attack?!

This video documentary on neuroplasticity is quite fascinating if you’re interested in understanding more. (Just feel free to ignore the creepy music.) Variations of these concepts have been proven effective in the treatment of physical injuries, such as stroke patients or those who have suffered brain damage. And it’s also helped those who have suffered psychological PTSD or have OCD. 

Next week I’ll be unpacking a bit more about neuroplasticity and the design of the program, but until then you can also check out the website to watch some tutorials and read up on the science behind it. (<—that’s my affiliate link, which means I may earn a small commission if you click on it and purchase the program. As a reminder, I only share things I’ve either tried or believe in the value of. In this case: I’ve tried it and it’s helping me heal!)

My one-month improvements:

I’ve been on the program for just 4 weeks now and the changes in that short period of time have been quite amazing. Especially when Trev and I compare it to the life I’ve been living the last few years. And while I have more healing to work towards, I’m truly grateful for these beginning signs of healing.

As a pre-cursor to my improvements here’s a list of most of my diagnoses: Lyme, Bartonella, Babesia, Mold Illness, Heavy Metal Toxicity, Fibromyalgia, Chronic Fatigue Syndrome, MTHFR genetic mutation and POTS).

  • I’ve gone from barely being able to walk a couple blocks on a very good day to walking almost daily the last week+.
  • My fatigue levels used to be at an average of 7-9 every day (on a scale of 10 being “I can’t move”) and now my levels are averaging below 5 consistently.
  • The inflammation and joint pain I’ve consistently lived with hasn’t been this low in over 4 years.
  • My strength is slowly growing and my litmus test is being able to do the dishes almost daily. They used to sit an average or 2 days before I could get through another round.
  • Dizziness used to be one of my most debilitating symptoms. Now? It’s at an all time low also.

The healing process continues…

There continue to be new things that pop up and surprise me as I continue to commit myself to the program and work toward further healing. And in my commitment to the program, this post will be one of my last to mention diagnoses or symptoms for awhile. It’s a necessary part of retraining my brain in this critical stage of early healing.

Guys, I’m not going to sugar coat it for you: this treatment is not easy. But then again none of what I’d done for healing has been. Seeing improvements and feeling genuine hope is most certainly worth sticking with it.

With all that said, I feel so happy to share that I believe I’m in the process of healing. And while I believe in God, I’m going to keep my feelings on this experience ultra-real for you: this is not something that I’ve seen sprinkled down magically into my life. 

I’ve fought for this. For years.

I’ve committed myself to countless supportive supplements, doctor’s appointments, injections, blood draws, detox, nourishing myself, gripping onto my pebbles of hope, so-much-waiting and now I continue to reach for healing with this program. (And I continue to maintain my supplement protocol under my current doctor’s care while on the program).

So I’ll leave you with this one-month update and hope that this program may also help some of you sweet struggling ones on your own healing path. To reclaim your own health. To heal your brain’s limbic system. And begin to see yourself able to dream again… of living a healthy life, of travel, and of pursuing the things you’ve been waiting for.

Have you heard of DNRS before? Or tried it? Have questions you want me to answer in another post? Drop your thoughts below in the comments! I’d love to hear from you. 🙂

As a heads up: I’ll be largely taking a break from my Facebook page indefinitely, so if you want to stay in touch be sure to sign up for my email list. Or connect with me on Instagram!

 

*Disclosure: This post contains affiliate links. That means that if you purchase through one of these links, I may receive a small commission (at no extra cost to you). Thanks for supporting this blog and my health!

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This episode of the podcast is dedicated to all you brave mamas who are fighting chronic illness while raising their family. Tanya Fierro is joining me on the podcast to talk about the challenges she's faced and how she's learned to navigate them. Click here to tune in!

Motherhood & Chronic Illness: A Podcast Episode with Tanya Fierro

Every time I connect with one of you fellow spoonies who’s also a momma, I am so inspired by your strength. On top of the layers of struggle that sickness brings, somehow you wonder-moms are raising your kids with so much heart and care.

You’re tackling what you can in the home. You’re showing up whenever you can for the big moments, and embracing the small ones on the daily. You are patient. You are giving. And you are rockstars.

Since I don’t have personal experience in this area, I wanted to chat with someone who could share their experience and encouragement with other parents who chronically ill. Someone who understands the unique challenges of balancing a life of pain and mothering (or fathering).

A chat with Tanya Fierro

So today, I’ve brought on Tanya Fierro to chat about her own experiences with motherhood while living with fibromyalgia and chronic fatigue syndrome. She writes over at My Fruitful Home, sharing inspiration and helpful tools for living life fully with chronic illness.

Tanya’s had her share of heartache and struggle. Her understanding of loss has been an encouragement and comfort to me as I continue to live with the memory of my own. And I know that her story will inspire and connect with so many of you, too.

So whether you’re a mom, chronically ill, or hoping for motherhood someday, or just want to listen, you are welcome to join us on our virtual couch today. I’m telling you guys: her honesty and kind heart are such a light.

You can tune in below to hear us talk about the challenges she’s faced and what she’s learned through more than 20 years of motherhood and illness.

What is one thing that helps you navigate motherhood while living with chronic illness? 

Want to connect with Tanya? You can find her on her blog and on Facebook. 🙂

 

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Chronic Illness has a way of turning every day tasks upside down. I've set out on a mission to find items that will help make my life, and even pain management, at least a bit easier. Click to read more about my top 5 favorite gadgets for making the day to day of illness more manageable.

5 Useful Gadgets That Actually Make A Difference For Me

 

*This post contains affiliate links. Your purchases through these links help keep this blog running, so thank you!*

Chronic illness has single-handedly turned my health and day-to-day into a jigsaw puzzle. From navigating all my symptoms to pain management, life looks much different for me these last few years.

Normal things that I used to never think twice about, I have to plan for (or around) in order to make them possible. A myriad of other adjustments have had to happen.

I subconsciously (and sometimes vocally…color me weird) ask myself questions that I never did before. “Can I load the dishwasher today?” “How much will my body have to pay for taking a shower right now…can I still make dinner after?”

Some symptoms are harder to manage than others. Managing pain can often feel like playing hide and seek with a ghost. Fatigue is another beast that’s really hard to wrangle.

But for some of my symptoms, I’ve found tools – aids, if you will – that make my life just a bit easier. And that little bit means a whole lot to this girl! From saving me effort to supporting me (literally), these have become my must-haves for navigating my day-to-day. All while living with a list of diagnoses I’m working hard to heal.

Update: I’ve actually been able to stop using some of these wonderful aides after starting a program called DNRS that has helped me begin to heal! You can catch up here.

Slim-Fit Earplugs

Do you suffer from sound sensitivity? These slim fit earplugs have been a godsend for me! Super soft and comfortable on sensitive skin, too. Click to read more about these and other handy gadgets I use to help me navigate chronic pain and symptoms!

One of my top 5 most debilitating symptoms might surprise the healthy, but for those who live with sensitivities YOU FEEL ME. I’m not talking about emotional sensitivities, but sensory. I’m highly sensitive to noises, some triggering me more than others.

The simple sound of plastic crumpling, glasses tinking, or the faucet running, for instance feels like someone is taking a bristled bottle brush, adding electricity and shoving it through both ears. Yeah, it’s fun. With continued healing I’m confident this symptom will get better, but for now: earplugs are a must!

These slim-fit earplugs by Mack were recommended to me by a dear friend who uses them for the same purpose. And boy are they a godsend! They’re smaller than regular earplugs which makes them more comfortable for me. The set of 10 even comes with a travel tube so I can always have them on hand and easy to find in my bag!

Neck pillow

A couple of years ago I noticed that my head and neck pain would consistently rise in the car. Once I realized how much having neck support would help, Trev picked up a basic neck pillow for me. I was amazed at the difference it made!

As with anything I’ve purchased to help me manage my day-to-day, this doesn’t remove my pain, but it makes riding in the car more manageable. Even short rides used to spike my pain more than they do now that I have that bit of support.

I actually attach my neck pillow to our headrest in the passenger seat by turning it backwards and “hugging” the top portion. Not all seats will allow this, but thankfully the design of ours does. It feels more comfortable to me that way.

Walking Cane

Healing with a chronic illness looks different for every person and every illness. But through the process of healing and treating, we can find ways to offer support and relief to our overwhelmed bodies. Click here to check out my top 5 tools that have made a difference for me!

 

If you follow me here or on social media you may already know this, but I like to name things. My oxygen concentrator is formally known as O2D2 (I grew up watching Star Wars with my siblings, can you tell?). So I couldn’t help myself to name my cane Hugo. It was easy since his tag said so.

My husband suggested I get one that had more than one pod on the bottom for extra stability since my balance varies from day to day. And, as he would smile and tell you – I wasn’t thrilled with that idea. Oh vanity. As if four prongs somehow makes my cane more noticeable. 😉

I found this one and thought it was a perfect fit. And after using it for over six months now I can say I’m so happy I went for the quadpod version. It gets a good grip on the surface and the handle has enough traction that your hand is not likely to slip. I even used it in a snow-packed icy parking lot recently, while also being supported by Trev on the other side and it worked really well supporting my weak side.

Pill Organizer

This is, by far, the BEST pill organizer out there. Each day's doses are in individual containers which makes it easy to grab and go to doctor's appointments, meals out, and a day or two of travel. Soft silicone lids make for easy opening on arthritic hands. Click to read more about this and 4 other handy gadgets that have actually helped me LIVE, even if in small ways, in spite of chronic illness.

Okay, I’ve been raving about this since I bought it so I HAD to include it here. I saw someone share the link for it in one of my Lyme support groups and I loved it at first sight. I’m a romantic, after all.

Why was I willing to drop $35 for a pill organizer, you ask? Because I was confident it would make my pill routine easier. From accidental missed doses, to opening pill bottles every day with sensitive hands, to packing meds for travel – I saw this as a huge help. And it has been just that.

Its soft silicone lids make it ultra easy for opening and the ‘x’ opening easy for sliding in each day’s supplements. My hands are so much happier! Not to mention individual containers make for easy access when you have a meal you’re eating out or a day or two of travel. Since I’ve already sorted out the week’s doses, it’s just grab and go! This had made for less occurrences of late or missed doses which is always a positive.

Motion Sickness Bands

For a year and a half, nausea was a frequent – if not constant – companion to me on this healing road. I’ve always had motion sickness, but this was different. And it grew worse when coupled with driving.

I always ride in the front seat and I’m pretty cautious about anyone else driving besides Trev because of how sensitive my bod is. He’s the only one who knows just how fast things can turn for me.

Motion sickness bands like these made by Sea Band have actually helped this for me. It took me a bit to figure out the right spot for the pressure point, but once I did I noticed a difference. You do need to put them on at the start of the car ride, I’ve learned – and adjust them if you’re not feeling the benefit.

Be gentle with yourself.

In the chronic life there are many things we can’t change immediately. Healing that doesn’t come overnight. But if we can take even a bit of the burden off by making a few aspects lighter, why not?!

You’ve just heard my top 5 current faves for navigating my day-to-day symptoms so now I want to hear yours! What is your favorite(s) pain/symptom/make life easier gadget?? Let me know in the comments!

Have you snagged your copy of the FIVE gifts to give yourself when going through a hard time? Be sure to download yours here.

These 5 gadgets were my go-tos in moments I needed them most. From pain management to coping with symptoms, these tools were so helpful to me! Click to read the full list.

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Three bloggers share about the moment they were diagnosed in this collaboration piece. Their words are real, honest, and validating to anyone who has waited for their own answers.

When You Finally Get a Diagnosis

If you have a chronic illness, do you remember the moment you were diagnosed?

I remember the first diagnosis I received. How mixed my emotions were. How strange it felt to finally have an answer after a grueling year of tests and many years prior filled with strange symptoms. Only to find out several years later that I had, in fact, been misdiagnosed. Instead of MS, I had Lyme disease, and a late stage at that.

I wanted to give space to a few other bloggers to share their own experiences here on the blog. To talk about what they remember of that moment a doctor found the answer they’d been searching for. And how their life has changed since.

Each of these stories you’re about to read are so important. They are a reminder of our humanity in illness. The reality of being a patient searching for clarity amidst the madness of our unique illnesses.

I hope their stories resonate with you as much as they resonated with me. Their courage in sharing is oh so beautiful and I’m honored to have them here. Thank you Kate, Shelley and Alisha for being a voice for so many others. <3

When you've waited months or years for your diagnosis, that moment is filled with mixed emotions. Of anxiety and fear, but also relief and validation. Three ladies share their experience of the moment they were diagnosed...

Shelley Smith

Chronic Mom
Find Shelley on Facebook | Twitter | Pinterest

As I sat waiting for the doctor to come in, I realized I was tired of feeling vulnerable. I was weary of placing my life in doctors’ hands and having them let me down again and again. I was done listening to doctors who thought I was crazy because I knew there was something wrong with my body. After two years of looking for answers in all the wrong places I didn’t even care what the diagnosis was, I just wanted answers.

When the moment finally came I wasn’t fully prepared for the answer. I could hardly believe that after all this time the strange symptoms I’d been living with for so long added up to something, and it was something real. I wasn’t crazy, depressed, or lazy, I was sick. All my symptoms added up to a real diagnosis and now I could get my life back.

It wasn’t until two years later that I realized I was never going to get better. It took me so long to find a diagnosis that my body had been permanently affected. This was my new life with chronic illness and I had to learn to accept that my life was going to be different. Acceptance didn’t come right away. There was a lot of grief I had to process first, but eventually I was able to find peace with the messy version of myself that was created by illness.

Because even messy and broken, I’m still me.

Do you remember the moment you were diagnosed? Read these accounts of the moment patients were diagnosed and all the emotions that came flooding in.

Alisha Nurse

The Invisible F
Find Alisha on Facebook | Twitter | Instagram

I’ll never forget the day I was diagnosed with fibromyalgia. I was flooded by emotions. Finally, there was a name to what I’d been suffering my whole life. There was validation.

I recalled the countless times I’d squared up to guilt after being asked what was wrong by family and co workers when I couldn’t go to work or social events. I felt absurd rattling off the myriad of symptoms I exhibited, and felt exasperated every time good meaning people offered the same advice – ‘you need to exercise’, ‘you need vitamins,’ ‘maybe it’s a mental thing,’ – I was living that hell and no one understood. Nothing helped.

Then uncertainty and fear. Now I knew what to call the monster but I wasn’t sure exactly how to fight it. The doctor gave me a little brochure but said there was little information on it. My Google searches offered little results, and no one I knew had ever heard of it.

I started off very dismayed; for years, I spent most of my days in bed, never went out, because I was in so much pain, so exhausted and dizzied. I fought the best I could but felt like I was a spinning top in mud.

A lot has changed since then. A series of events, including finding a full time job forced me to push harder against the gale storms. I changed my diet, lifestyle and outlook, took time to understand my triggers, find the right medication and detox from the things/people that made me flare. It’s been a tumultuous journey but it led to me reclaiming my life, and discovering what I’m really made of.

Having a doctor who is determined to help you get to the root cause of your medical issues is such a gift. There is validation, relief, and so much gratitude wrapped up in the moment they are able to give you insight or a diagnosis.

Kate Eastman

Make It, Bake It, Fake It
Find Kate on Facebook | Twitter | Instagram | Pinterest

Really?! All these crazy things my body was doing; from breathing difficulties, to forgetting how to add up numbers, body pain, to extreme fatigue and nausea…”maybe I was imagining it“?! I left that doctor’s appointment with tears running down my face.

By the time I got home I was fuming. I threw on my running gear. “If this is psychological”, I chanted in my head, “I will go for a huge run and outrun it.” At a steady pace I started off, pushing harder and harder. I was used to running 10 kilometres. This should be easy. 300 metres later I lay collapsed on the bench at the side of the oval. My chest ready to explode. My body in agony. There was definitely nothing psychological about this.

Weeks later, I walked into an appointment with a new doctor my friend had recommended. Was I game to trust a medical professional again? My list of symptoms and inconclusive tests clutched tightly in my hands. She listened patiently and asked the right questions. She even did a psychological screen to prove to me it was not in my head. She ordered more tests. Yet, then and there she suggested I probably had ME/CFS.

Two weeks and I returned to her office. The tests were clear. I met all the criteria. I had ME/CFS. I left the office that afternoon in disbelief. I had a diagnosis. Yet, I promptly turned around and played sport that evening. Life had no time to stop for this diagnosis. It took me years to truly accept my diagnosis and to admit that I was sick. I continued working, exercising, and being busy. Until one day my body had enough and wouldn’t do anymore!

My body continues to do weird and (not so) wonderful things. However, I am thankful I now have a doctor walking that journey alongside me. Who when I lose my faith, continues to push me forward, opens up new treatment options, and supports me in navigating the welfare and insurance systems. Four years in I can see how God is walking every step alongside me, and how there is nothing psychological about this disease!


Do you remember the moment you were diagnosed? Or are you waiting to find the answer to your own medical mystery?

the-moment-we-were-diagnosed

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Lyme Disease Awareness

lyme awareness month

happy Saturday, wonderful people.
yesterday was World Lyme Day, kicking off Lyme Disease Awareness month.

since this disease has directly affected my life since 2010 I absolutely HAD to participate in the Lyme Disease Challenge: Take a Bite out of Lyme. as many of you know from either knowing me personally or simply following my blog, I was misdiagnose with MS early on in my journey and treated for that for years. however, last year we realized I actually had late stage Lyme disease. this disease has forever changed my life and I want to spread the word that this disease is spreading and is not adequately funded or understood within the medical community.

the Lyme Disease Challenge involves these steps:

1) take a bite!
bite a lime and take a photo or video of the act and share it with your friends!

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2) share a fact
choose a fact from the Lyme Disease Challenge and share it with your pic.
IMG_20150502_0954063) pass it on
I tagged a few of my friends on Facebook, but I challenge you to consider helping bring awareness to this debilitating disease, too! I’d be honored to have your support.

after posting we are challenged to donate $10 to ILADEF (International Lyme & Associated Diseases Education Fund). for my donation, I am holding an online fundraiser through my Jamberry business throughout the month of May. I’ll be donating all of my commissions, along with Jamberry donating 10%. a total of 40% of all fundraiser sales will be donated to ILADEF! consider joining my page to learn more about the disease and how to protect yourself and your children from contracting this disease. and to consider supporting this fantastic organization with a purchase through my site!

hope you all have a lovely weekend, friends!

THINK GREEN this month! 🙂

–Kami

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