Health/ Tarlov Cyst Disease/ YouTube

Big Life Update…

August 25, 2017
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and by “BIG” update, I mean detailed life update ūüôā


Did you know that when you spend an extended amount of time OFF of your¬†phone and computer and any other electronic device device magical things can happen? ¬†Did you know that not every single event in your life has to be shared on Facebook, Twitter and Instagram for it to have really occurred? ¬†Did you know that these moments might have possibly meant so much more to you if you had been present from beginning to end… and I mean truly present. ¬†This would mean not¬†spending time forcing your kids/family to get into position for a staged picture, then taking the 5 shots¬†on your phone to get it right with the perfect lighting/perfect skin tone/perfect hair, then spending another 5 minutes editing them to make them look better (or make yourself thinner/remove your blemishes/smooth out your skin to look like a porcelain doll, then writing a catchy description for your “friends”, then spending the time replying to comments from these “friends” of yours.

Shocking, I know.

I’ve learned a lot of the course of the past few years. ¬†Ever since my medical journey took a drastic turn, not only has life in general changed, but I have changed. ¬†I don’t see anything like I did 3 years ago. ¬†My relationships are different. ¬†My days are different. ¬†My heart and brain seem to be have been rewired. ¬†I’m a completely different person in more ways than I can list (and most are for the better). ¬†Gone are the days where I felt the need to share every little moment as an update on my Facebook to feel validated. ¬†Gone are the days where I felt pressured to post a picture on my Instagram to stay relevant. ¬†Gone are the days where I was¬†rationalizing all of the time I spent with my face buried in my phone. ¬†And gone are the days¬†where life was¬†simply happening around me. ¬†I started actually LIVING this year, especially these past few months and haven’t looked back.

Life is so precious, far more precious than people realize. At ANY given moment everything can be taken away from you and its usually not until something traumatic happens that some people realize how amazingly lucky they are.

All of this in my life in only a handful of months:

  • one aunt with¬†the most infectious of smiles, kindest of hearts, and truly amazing spirits had a¬†brain aneurysm and passed away
  • a¬†different¬†aunt with a¬†heart made of pure gold and most devoted faithful spirits you will ever come across had a brain aneurysm and is currently continuing to fight every single day
  • one sister was diagnosed with breast cancer, had a double mastectomy, and¬†is currently on her 4th and most difficult round of chemotherapy
  • another sister had a breast cancer scare only a couple of months after the other sister was diagnosed

Just like that.  Out of nowhere.  Life can change.

No moments should ever be taken for granted. ¬†Love with your arms and heart wide open. ¬†Laugh big and often. ¬†Learn to find beauty in the most mundane things. ¬†Seek out blessings in the most unfortunate of circumstances. ¬†Cherish the souls of those around you and let them know how much they mean to you. ¬†Live the life of your dreams. ¬†Don’t settle for anything less than what you truly desire. ¬†Strive to be a better person every single day. ¬†Be kind. ¬†Put off in the world what you hope to receive.

Chronic illness, chronic pain, and lifelong medical conditions have the amazing ability to change anyone. ¬†Some for the good (like myself) and some for the bad. ¬†I see so many people sink into despair because life gets hard. ¬†They refuse either refuse to fight back or they get so tired of fighting the fight, they simply give up hope. ¬†I made a very conscious decision once my body began to fight me at every little turn that I was going to choose “life” always and by choosing “life” it meant really really really living.

Living in the moment.

Living a life that I designed.

Living a life I’m passionate about.

Living a life that gives me true purpose and meaning.

And perhaps most importantly….

Living a life fully present with those in my life that mattered the most.

I can honestly say that despite the roller coaster of navigating my way around all the medical things…

I absolutely LOVE MY LIFE.

I can only think of a couple of things I would change (like winning the lottery perhaps and having a live in housekeeper), but can honestly and truly say that I’m living a pretty damn amazing life! ¬†For that I am grateful every single moment of the day and take no moments for granted.

So all that being said and getting all the mushy stuff out of the way… with my little one back at school starting SEVENTH grade, my 18 year old son safe and finding his own place in this world living on his own, and my husband asleep after a long shift fighting bad guys… it’s time I get caught up with the ‘house cleaning’ so to speak to make way for the next leg/s on my life! ¬†It’s been so long since I’ve really shared anything “personal” here on my blog or with extended family and friends. ¬†Put on your seat belts, lots to pack in at one time!

First things first… let’s recap my beautiful girl and her own medical journey.

Joe and I¬†feel entirely blessed that Makena has responded so well to treatment. ¬†Although that first month which¬†literally broke our hearts, the trauma of her diagnoses and Makena’s painful daily injections began to slightly subside. ¬†It all became a part of our daily routine and we eventually found our “new normal” with this disease and everything that comes along with it. ¬†Aside from a couple of minor rash issues, she has technically been in medicated remission now for at least 2-3 months. ¬†Even better news to share is we were originally told during our very first appointment with her rheumatologist that we shouldn’t even think about weaning her treatment until early this Fall, but because Makena has responded so well to treatment and her blood work moved in the right direction we were able to start spacing her 24 hour injection to 36 hours back in April and then went to every 48 hours in June and every 72 hours only a few weeks ago. ¬†Next appointment is scheduled for September 11 and I’m crossing my fingers that we can jump to possibly once a week!

And while we originally had no idea if Makena would even be able to finish out this volleyball season at the¬†onset of her disease…. well, lets just say that she not only finished it out but KILLED it. ¬†This girl gave her heart and soul to her sport EVERY single time she stepped onto the court. ¬†It never mattered if she was hurting or swollen or tired or had rashes or a fever. ¬†Makena gave 100% when her knee pads were on and it was time to play. ¬†Pride can’t even begin to describe how we feel…

We traveled to Vegas for JNQ’s (junior national olympic qualifier) in Vegas this past¬†April:

And then in June we were off to another tournament in Phoenix:

Yeah, Makena is doing AWESOME.  Fall ball is just starting and then comes another traveling season!

Nothing new to report with the husband. ¬†Joe is still the same boring, amazing, kind, generous, loving, considerate, giving, caring souls you’ll ever come across. ¬†Blessed every single minute to¬†also have him as my best friend and partner in life.

And now to some news about myself…

Spinal conditions have been pretty steady this year. ¬†Nothing¬†really new to report. ¬†Aside from a few flare ups I’ve had that usually bring my daily 1-3 pain levels up to 5-6 now, I can’t complain. ¬†I truly feel like the day I started my HIGHLY nutritional ketogenic lifestyle was the day that everything changed for my spinal disease (amongst my many other medical conditions). ¬†Unlike so many others living with this horrendous and rare disease, I have been able to find a “new normal” and suffer quite a deal less than most. ¬†Foods and what I now choose to put into my body have truly made the biggest impact on my life.

Making the conscious choice to stop taking any and ALL medications (even Tylenol/Advil) was another game changer for me. ¬†I have been 100% medication and prescription free for over an entire year now. ¬†Fortunately I haven’t had any major major medical problems but when pain increases, energy is low, fatigue sets in, brain fog rears its ugly head, or I even get a little headache… food and all the natural things come to the rescue and I am able to combat everything my body throws at me.

Let food be thy medicine.  Let medicine be thy food.

My mantra now for nearly a year. ¬†I’m living proof.

A few new medical things to report though…

We had a huge health scare at the beginning of the year after my ankle started acting up out of nowhere. ¬†Initially imaging was done which resulted in an MRI of my ankle because a ‘lesion’ was found. ¬†A doctor calls you on the phone (over the weekend), says the word ‘lesion’, you ask point blank “is it cancer?” and they can’t answer you????

Yeah, it was a rough 3-4 weeks until the MRI and report was finalized. ¬†No cancer, but as it turns out 3/4 of my ankle¬†needs to be completely¬†rebuilt…. from scratch with screws, rods, and the whole nine yards. ¬†In order to do this they need to break two bones, push a muscle aside, and maneuver around a tendon to even get where they need to be. My surgeon and doctors are amazed thought at how I have been able to walk or even stand, let alone deal with the pain…. thank you again¬†EARTH and FOOD and NUTRIENTS and all of the healthy things that help me control the pain and even rebuild new healthy cells around my broken ones!

Its going to take pain levels to get to at least 7-8 before I even consider being opened up. ¬†Until then, my surgeon is just waiting on me. ¬†At this point though I’m not ready to have surgery and we aren’t sure how my body would even respond which brings me to hopefully my final update of the year…

Again, through the power of diet and food and all the healthy things I have been able to keep my autoimmunity completely at bay. ¬†My inflammation markers were immediately reduced after only 2 months on Wahl’s Protocol (level 3) and all of the other tests that were pointing to MS, Lupus, and RA are now stable!!! ¬†Yes, you heard that right friends. ¬†I have been able to ward off my autoimmunity from going full blown simply through diet and lifestyle changes. ¬†When my body fought, I fought back ten times harder. ¬†Like I’ve said many times now, my health became my FULL time job when things started going south. ¬†Hours and days and months and years of research now to help treat everything that ails me and the defective body I am blessed to have!

Unfortunately the problems I have with sight/sound/touch hypersensitivity (Joe calls me a super hero when things flare up), tingling & pins and needles throughout my body, radiating pain, intermittent fatigue, stiffness, and a few other issues have remained.

In June, after seeing every specialist you can think of being poked, prodded, violated, questioned, examined, and re-examined…

I was officially diagnosed with Fibromyalgia.

Yet another invisible disease I’m blessed with! ¬†Some days are better than others and I’ve been managing symptoms (naturally of course) since the day my rheumatologist began to suspect my diagnoses just this past February. ¬†In many ways, once we got word from my rheumatologist about her suspicions for the diagnoses, I almost felt like “OK, lets tackle and fight this!” ¬†I got it. ¬†So by the time the diagnoses came around, I was already well on my way with my own plan of action. ¬†Thanks for the offer in prescriptions though doc, but I won’t be needing them!

And because I’m not one to wallow in my medical conditions, let them bring me down, let them steal my any more of my life away than they already have, or let them consume me…

Let’s jump ahead to the next update ūüôā

As some of you know, I finally worked up the courage to start a YouTube channel! ¬†This was years in the making, but I just couldn’t work up the courage to get it going. ¬†I’m awkward, I didn’t think anyone would listen or want to hear anything I had to say, and was scared I would fail miserably at it regardless of how passionate I am about my message. ¬†Turns out though that only TWO months into really being serious about my channel… I’m not only gaining momentum with new subscribers (initially gaining 25- 50 per week, then 100 per week, and now a hundred every couple of days), BUT I can also say that I’ve fallen in LOVE with all things YouTube.

Thinking of content, planning content, filming content, editing content, researching content…. totally in love. ¬†It’s like a new creative outlet I have found to replace my newborn photography and business that I loved so dearly for a handful of years (until it was stolen from me with that defective body I have). ¬†People are watching, they are subscribing, they are commenting, they are emailing, they are engaging. ¬†Honestly kicking myself for not doing it sooner… nothing but sheer enjoyment and love for this new little venture. ¬†The passion I had for a truly creative outlet has been rekindled and I have so many amazing things planned for my channel!

I’m officially a “YouTuber” now and even generating an income from it! ¬†Who knew?!?!

Almost done with my updates, but not quite yet…

In the midst of living¬†and not being afraid to take on new challenges and journeys and fears, it seems like I also started a new little business venture! ¬†Completely happened by accident a few months ago, but I’m now an unofficial “meal prepper”! ¬†Someone local here in San Diego found my YouTube channel, watched my video on meal & food prep, and decided to ask if I would be willing to make her meals for her. ¬†Since she had been struggling to find time to do it herself each week, wasn’t sure how to balance portions,¬†find more nutrient dense options for¬†the foods she loved, or get the right nutrients in to fuel her properly and still reach her goals (weight loss & energy), I decided to take her on as my first client. ¬†Two months and eight weeks worth of meals later she is has continued to stay on with me AND my list of clients has grown as well.

Yeah, who knew?!?!

Due to the challenges of the entire operation though as of right now, I am only able to take on a handful of clients at a time. ¬†I currently meal prep each week for four women and can probably only handle 1-2 more local San Diego clients if you know anyone who might be interested. ¬†I’ve already looked into a commercial kitchen facility, but as of right now it’s a small operation that I’m hoping to grow in the new future!

HEALTHFUL, gluten & grain free, dairy free, soy free, organic, grass fed, flavorful, and delicious meals all created and made with nothing but love for food…

Greek Chicken Salad W/ Herbed dressing

Zoodles & Meatballs

Fiesta Lime Turkey Salad

Coconut Zuchinni Protein Oats

Southwestern Breakfast Bake

Southwest BBQ Turkey Meatloaf W/ Sweet Potato Mash

Salsa Verde Lettuce Cups

Citrus Asian Chicken Salad

Fall Spiced Turkey W/ Roasted Sweet Potatoes

Yeah, a fun new project for me! ¬†Cooking for myself and may family is great, but sharing my actual food with others? ¬†Loving’ it!

And now for maybe the biggest news I’m going to share here today…

As you have heard my enthusiasm for nutrition is strong. ¬†It’s real, clearly. ¬†Food as a tool for healing is something I am extremely passionate about for nearly a year now. ¬†I’ve been able to treat and improve my own medical conditions solely through food and I want everyone to know about it. ¬†Once I started busting at the seems with this eagerness to share, I decided to go back to school to become a holistic nutritionist in order to help people achieve their own goals and feel the best that they can. ¬†This month I finished my FIRST set of nutrition courses and…

I am officially certified to practice!

I’m still getting certified in at least 4 other fields (weight management nutrition, sports nutrition, and a couple of others), but I’m open for business and actually even have clients that I’m working with already to help them navigate their way around food and lifestyle and feeling their BEST. ¬†Elation and excitement don’t begin to scratch the surface with how I felt after passing my first exam!

As of right now I am specializing in a nutritional ketogenic lifestyle, but also have clients who with some more special needs such as Type 1 diabetes, PCOS/insulin resistance, Tarlov Cyst Disease, Hashimoto’s, and even MS. ¬†I don’t believe in prescribing a specific way of eating like keto to anyone and everyone though. ¬†If I think someone may benefit from this lifestyle, I suggest it. ¬†Otherwise I want them to truly be successful so come up with a plan thats customized and catered for them! ¬†It was never my intention to specialize in those with chronic illnesses, but I’ve actually really loved hearing the success stories of FEELING BETTER that aren’t necessarily solely revolving around weight loss. ¬†Its about so much more than that to me. ¬†This is about fighting for a better life, inside AND out, and ME helping them to achieve it!

Here is a little snippet of an email I received from a client who not only struggles with a very serious autoimmune disease, but also a years and years of disordered eating:

More than one tear was shed after reading this email in its entirety.

My heart and life feel so full.

And last but not least for this post which is already ridiculously long…

While we didn’t get to Hawaii this year, we did take a week long vacation up the coast of California. ¬†This is actually a trip Joe and I take yearly, but with Makena’s medical condition and needing her injections we towed her along with us this year. ¬†In some ways I was a bit sad because this was kind of a husband-wife thing, but in all honesty we were both really really looking forward to sharing our special spot on the¬†planet with Makena.

One thing that was re-kindled in me was my love of photography.  As a professional photographer, many can relate but the more we capture moments for OTHERS we often begin to slow down the amount of personal pictures we take (and not the ones captured on the phone simply to share on that good ole social media).  I remember before I started my photography business, I had my camera with me all of the time snapping away but as my business grew and grew, the amount of family moments I captured dwindled and dwindled and some months became completely non existent.

In Carmel though, on a quick trip to the beach, I brought my big camera along and snapped away. ¬†The beautiful scenery, the sand, the rocks, the shells, the sky, the water… and most importantly… the ones I love… exactly how life unfolded.

Joe sprinkling sand on Makena’s head.

Makena running from¬†the cold water while filming some moments herself…

My gorgeous girl with her messy, tangled, beach hair.

Joe soaking up a moment with his pride and joy.

Instead of quickly snapping pictures on my phone or telling them to do this or do that, there’s just something different and magical from having to look at things through a little view finder. ¬†You see things unfold naturally. ¬†You find more beauty. ¬†You feel more love. ¬†You’re heart melts even more. ¬†You’re in awe. ¬†You are in the moment. ¬†You truly fall madder and deeper and more in love with your life. ¬†At least I do anyways.

I loved being¬†behind the camera again looking at something other than food. ¬†As much as this girl loves food though, I love my life and those who are in it much much more. ¬†After this trip, I definitely have a new goal to lug out the big camera to catch special moments. ¬†I won’t live behind the camera. ¬†I won’t force the pictures. ¬†I won’t pose the pictures. ¬†And I certainly won’t be taking them with the sole of intention of “needing” to display them on social media just show ‘awesome’ and great my life is (which it is by the way). ¬†Just amazing things I want to remember like my daughters big brown eyes. ¬†Her beautiful long lashes. ¬†The special relationship that Joe and her have. ¬†The bond the two of them share. ¬†Times when my son is back home visiting us. ¬†The amazing ability he has to make anyone smile and laugh so hard their stomachs hurt.

Those are the things I want to capture… thats it.

This is my “new normal”. ¬†This is my life, right now. ¬†These are the things I’m passionate about. ¬†This all gives me new purpose. ¬†This is all what I am meant to do, right here and right now. ¬†These are things I am thankful for.

This is me, now.

Can you tell?  Can you feel it?

I love this “me”.

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  • Reply
    August 29, 2017 at 2:25 pm

    Always a pleasure reading your blog, now I need to start watching your youtube channel! I don’t know much about Fibromyalgia but I do want to share with you a tool that might help. Look up Ashley Black’s Fasciablaster. She has a private women’s only group on facebook and tons of videos on her website and youtube. She has talked before about how the fasciablaster can help relieve some of the pain caused by Fibromyalgia. And bonus, it’s not medicine!

    • Reply
      September 8, 2017 at 4:19 pm

      hahaha! Been a fan of blasting for a year now!!! Makes a huge difference with my body. I LOVE it! Thanks for sharing your info though, means a lot to me!!!

  • Reply
    August 30, 2017 at 12:55 pm

    I am SO HAPPY to hear Makena’s update. It’s so amazing that she’s already back to volleyball. It’s great to hear you’re happy. Those meal prep photos look delicious!

  • Reply
    September 8, 2017 at 3:28 pm

    Do you still take the natural supplements you suggested in a previous post such as Serrapeptase? I was diagnosed recently and would like to give it a try. I’m on Lyrica now and also taking turmeric, which seems to be helping.

    • Reply
      September 8, 2017 at 4:17 pm

      Hello Joan! I am currently still 100% all natural with my pain and symptom routine. I no longer take serrapeptase though. I cycle through my supplements every few weeks/months. First step for me in my “treatment” was stopping ALL medications, specially pain killers and Lyrica/Gabapentin. Next biggest improvements came from my diet! Hope that helps! Good luck.

      • Reply
        September 10, 2017 at 6:43 am

        Are you still using the Quell device you mentioned in a previous post? I’m planning to buy one. Can you share why you stopped taking Serrapeptase? Thanks so much for openly sharing your experiences. Gives me hope that I too will be able to manage without surgery, which really scares me because I have a 15-month-old daughter I need to take care of.

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