Fibromyalgia - FBS - My New Life

In June 2020 I started feeling "odd" and began my journey of feeling nauseous every time I ate.  Then around August noticed my blood pressure which had all my life been around 110/70 was now at 147/105 pretty consistently.  I started having sharp pains in my back and shoulder/elbow joint of my right arm.  Slowly everything started multiplying.  

By October I was throwing up "nothing" at least twice/three times a day every single day.  My PCP was trying to help me figure out everything.  I went on Olmasartan for my blood pressure only to end up in the urgent care with angioedema because I'm allergic to angiotensin II receptor blocker (ARB).  

With extreme pain in my back and neck I decided to see a chiropractor in desperation.  I've never liked going to a chiropractor.  I always feel sick afterwards - especially if they do the electrode thing.  After three visits I was not able to function anymore.  I swore I had vertigo.  For months!!!!  I went to my PCP for help.  Went to my ENT for help.  Nothing helped. I did every vertigo exercise on the internet.  No help.  I decided I would just be a functioning vertigo human and ignore it.  

In November the pain throughout my back was now constant and had moved to my arms and legs.  I began waking up almost nightly with tingling in my fingers and feet.  Would have to get up and walk around to get rid of the numb feeling.  Rohnin has been amazing - she has put CBD balm on my back every night for about 6 months.  She has really taken care of me.  Weston will give me back massages every night.  

By December I couldn't handle the constant choking feeling I had.  My ENT tried a lot of things in the office to help.  Eventually he suggested we do an esophageal dilation.  Vocal chords were all good.  Esophagus all good.  Polyps were found and biopsied - came back fine.

Made it through Christmas season and immediately started back up with doctors.  ENT sent me on to an Otalarynologist.  He had like an 8 week wait so I found a general surgeon to see what she would say.  She did an upper endoscopy with lots more biopsies.  Everything came back normal so she ordered a CT scan of my whole system - again everything normal.  This was now February.  

It's now mid-March and my entire body feels like a wildfire.  If I'm home I'm laying in bed on the heating pad with a heated blanket on my legs.  There is no way I can do another 45 years of life feeling like this and at this point doctors can't figure anything out.  I finally call my PCP and schedule an immediate appointment.  Thankfully he listens to everything and takes time to go back through my history to figure it out.

We went through every symptom I have and timeline.  

• Chronic pain and tender points throughout entire body
  
• Fatigue
  
• Sleep problems
  
• Concentration and memory problems, known as "fibro fog"
• Diziness
• Hairloss
  
• Severe anxiety - maybe depression - I don't know
• Morning stiffness
• Vomiting
  
• Numbness, and tingling in hands, feet, and legs
• Headaches
• Irritable bowel syndrome
• Restless leg syndrome
• Heightened sensitivity to pain

 When you are talking about widespread chronic pain to have them consider Fibromyalgia it needs to meet a certain requirement.

• pain in certain tender areas lasting consistently for more than 3 months
• a certain ranking on the widespread pain index
• pain on both sides of the body, and above and below the waist
• a certain level of symptom sensitivity, as determined by the examiner

Tender points are extremely tender and you don't want anyone touching you - even a gentle hug hurts.  The tender points are:

• Lower neck in front
• Edge of upper breast
• Arm near the elbow
• Knee
• Base of the skull in the back of the head
• Hip bone
• Upper outer buttock
• Back of the neck
• Back of the shoulders

With finally having a diagnosis I'm only slightly comforted.  This means I'll have pain probably the rest of my life.  I'm only about to turn 46 so that sucks.  

My doctor has prescribed Cymbalta.  After joining a few forums it's apparent that many do not like his medication because of the side effects.  I've only been on it for a week but the loopiness is very apparent.  I feel like my arms are about 50 lbs each.  I AM able to stand and sit straight up so that's good.  I'm still in pain but my dose will increase in another week.  We're slowly easing in to it.   

I'm a bit shocked at the diagnosis.  It seems a bit weird to have something wrong with you that won't go away.  But at least now I can start working towards a little less pain and maybe start being able to form full sentences again without feeling crazy.

 

 

Lena Willow - babies are CUTE

First. I have to say this is an amazingly beautiful couple. 

We are so happy to be able to see them and watch their family grow. Max and Kendall you are absolutely astonishing. 

Then to find out you two were expecting.  Aaahhh. 

Now to the most wonderful event that happened in 2020 - the birth of our granddaughter Lena Willow. Wow. Such a beautiful, precious baby. 

Kendall and Max had baby Lena on December 17. What a perfect present for mom and dad. Omg. She is just the cutest baby ever.  

Every photo of this angel is truly adorable. She has the funniest expressions and almost 3 months old. 

It's crazy to think you're a grandparent but then again Kris is 47 years old!  I'm about to be 46!  

While this little cutie and her parents live a few states from us we hope to see all of them soon. For now we just keep getting photos printed and a little scrapbook started. 

Boar, ram, pheasant...

 The past few months have been a lot of firsts. If you would have said I'd be eating meat the hubby hunted I would have "icky'd" out. I really can't stand too much variety in my diet. Not to mention any meat I eat must be burnt!  

So now we have a freezer full of ram meat, some boar meat left. We really like the boar so much Kris went back to the ranch and got a 480lb boar. He comes home tomorrow from the butcher....game guy. We take all our game to Thompson's to have it processed. They make some amazing jerky.

 https://thompsonssmokehouse.com/

Yesterday Kris went pheasant hunting with the Sheriff's Department, Highway patrol, and an elected official for our county. Yep....another thing I never would have thought would happen. 

Now I'm making pheasant for tonight's dinner. I picked a 6 hour slow cooker recipe. Thank you to my friend for donating some flour to me!  

We're going to wrap each breast with the bacon from our first boar. The slices are so thick I pretty much only use the bacon for extra flavor on other dishes.  I'm thinking we'll do a beet and broccoli sprout side salad. I've been experimenting with different sprouts. And the broccoli 🥦 are ready!

::::after dinner::::

Dinner was actually very very good. I made a cream of mushroom garlic sauce and poured that over the pheasant that was wrapped in boar bacon. Kept it very juicy. 

Definitely will eat again. But I think I'll add a bit if mustard. It needed a little tang to it. 

Home Sweet...six years already

 

Six years ago....exactly. we finished building this house on this copilot. There was nothing here. We watched it all build around us. The process was painful but we're so happy now to have such amazing neighbors and friends. 

Digging out the basement. This was a fun process to watch them build it but so many times we wanted to walk away. Happy we didn't. 

Basement done....now the actual framing starting. We didn't ask for the garden basement...it was an extra $9k  but due to the land the builder wasn't allowed to dig deeper. Yeah for free garden view. 

View from upstairs 

Haven in the soon to be kitchen

When it finally started feeling real. Like...are we actually doing this?  I can't stay in one place for more than two years. I'm born and raised...through and through MILITARY.  How will I be able to stay in one place???  (Got jobs where I travel the world)

Almost ready to move in!  

Railing went up on the porch. Another freebie. The house had to be built so high so we didn't have to pay for railings!!!

Finally. My favorite room in the entire house. 

I can't believe we're still here. Six years!  I do threaten to move us almost yearly but then I just go away for 5-6 weeks!  😁  

PS: We have the absolute best neighbors and friends. That is why we stay. 

Rare Disease Day 2021

 

Our daughter was diagnosed with a very rare disease in 2007. She was noted by John's Hopkins as the 31st case in WORLD. With such a low number of cases it was disheartening but also made it easy to find other families who had been diagnosed. 

ROHHAD SYNDROME 

After our daughter battled cancer we had to take on ROHHAD. 

What does ROHHAD mean?

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation

What is ROHHAD Syndrome?

ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. As the name suggests, the key features include dramatic weight gain over a six- to 12-month period in the first 10 years of life, followed by hypothalamic dysfunction, dysregulation of the autonomic nervous system, and alveolar hypoventilation. Children with ROHHAD appear to have normal growth, development, and general health prior to onset of symptoms. The cause of ROHHAD is currently unknown.Treatment varies based on the signs and symptoms present in each person.

(Please see rare disease on the NIH website)

How the heck did we find out about ROHHAD and have our daughter Diagnosed?

After three years of misery and a hospital in CA almost killing our daughter with anesthesia that we now know should not be given to ROHHAD children we moved to Maryland to save her.

https://www.hopkinsmedicine.org/news/articles/with-complex-cases-come-synergy-and-serendipity-diagnosing-rohhad

 After months of Dr. Cooke (endocrinologist) running tests on her we found the cancer and he started working with Dr. Paz-Priel in Oncology. Without them we would have lost our daughter. 

https://www.hopkinsmedicine.org/news/articles/the-mysteries-of-rohhad-with-pediatric-endocrinologist-david-cooke

Check out the TV show Mystery Diagnosis and our fight to be diagnosed. Haven is still going strong. 

https://youtu.be/m92K8hItup4

Donating her hair!!!!  Thanks everyone for your support over the years. 

Avocado Fries!

So.  Trying to mix up the dinner for our keto eaters that can't eat fries I found an amazing recipe on a blog by The Holderness Family. You should really check their videos out on YouTube!  Absolutely hilarious. Helps with Covid!

Anyway. I changed up the ingredients slightly to use almond flour instead of regular flour. Added a little bit of spice. These were so good.  Definitely recommend!  

 

Keto House

I know there are lots of keto houses out there....we're one. Well....mostly one. 

Haven is die hard keto.  She knows how many carbs or sugars are in every ingredient. 🤓 

Kris is 95% keto....he had a quesadilla in Arizona while hunting. 🤫 So back to fasting for his cheat day. 

I eat whatever I can swallow - esophageal dilation did NOT work. Waste of $500!  

Rohnin doesn't like meat....she may have been switched at birth. 🤷‍♀️

Weston is extremely picky but definitely loves smoked meat. 👍

The photo above is my cheat way to make "keto" pizza for Haven and Kris.  I really get tired of making sure I've got a great dinner planned. Especially when everyone eats something different. 

First I buy a Quest pizza crust....then add lots of protein and usually spinach. This one was onions, cheese, Klamata olives, garlic, and boar 🐗.  I love this because it allows my keto eaters to have pizza on Saturday when the two little ones have Domino's. Of course, Rohnin is cheese only and Weston is pepperoni. So it's two pizzas.  🤣

Anyone else have quick cheat keto recipes?  I'm in need!  

 

Happy 100th Birthday GiGi

 A super HAPPY BIRTHDAY happening this week!

Great Grandma (GiGi) Bist is turning 100!!!!  We're so excited to celebrate such an amazing birthday. 🥰

We wish we could visit. It's been so long!  I have photos from our visit right after Weston was born. 

Haven and GiGi.  2012

Baby Weston 👶

Little miss Rohnin and even Deezy got to join in on the fun. 

We love you Grandma!  We hope you have a wonderful birthday  🎂🥳🎉

Scooter Close Bro

Kevin Barkley

1974 - 2021

Wow. I never expected to receive the phone call I received on Valentines Day morning. Your sister called me, I've never talked to her in my life.  Instantly I felt my heart being ripped out. Every word was a blur after she said you passed away. 

But I can still see you smiling and laughing when I close my eyes. There is no way you can be gone. A song in the grocery store made me stop and smile because I felt it was you.

We had just talked last week. We were talking about Kendall being a mom, you wanting to make sure her husband knows he's lucky, and that old man Kris is a grandpa. 

We've talked many times about my sister passing away in 2019 suddenly from cancer. That destroyed me. Now you have gone. 

You were Kris' brother. You were closer to him than anyone for over 30 years. In 1999, you invited me into that family and you will forever be my little oldest brother. 

So many laughs. So many cries. So much craziness. 

I'll never forget Arrowhead 1999.....packed up like Red Dawn and screaming at the moon with the neighbors. 

In 2001 we all moved to Corona. We coined the term scooter close. We vowed to always be scooter close. In my heart we always were. 

I just want to share some memories. You always loved my scrap books. 

1996 - all the rowdy boys at it again.  I have this photo framed. Such an amazing bond right there.

Always making everyone laugh. 

You were always very protective and made me feel like a sister. We could tell each other anything. No judgment. You have and always will be my true best friend. I don't make friends very easy but you were the exception. 

In a few months from now I will have been married to this man for 20 years. We never could have imagined with our backgrounds of divorced families that we'd last. Having you be in our family and still watching over us was crucial. 

This....the three of you...were the backbone. I could never have asked for better friends and a stronger support system. 

New Years Eve.....shooting arrows down my hallway. Omg...thanks for reminding me of that the other day. Oh....setting your jeans on fire on my balcony.  Only to wake up and find just the metal in burnt ashes. 🤣😂🤣  Thankfully you were scooter close. 

This picture says everything. All of you are my heart. The biggest group of crazy brothers I could ever want. 

Getting up early and snowboarding all day. I never would have even tried it if you hadn't convinced me that catching the front edge is cool and fun. 🤣

My toast to you Barkley. You were one of a kind. You already knew you were forever in our hearts. I'm so happy I have had the last 22 years to know you and love you. 

Scooter Close Bro. 🥰

Pickling leads to Sprouting

 So....with the new mindset of not relying on stores (for everything) and an overabundance of eggs we started pickling. We pickle everything now....onions, pickles, eggs....as much as we can.

Well...then pickling led to sprouting. Now I sprouting everything. It started as a way to give the chickens healthy treats.  Now we eat them with everything. The below was my first go at lentil sprouts.  

When you sprout lentils the phenolic content  increases by a whopping 122%. Phenolic compounds are a group of antioxidant plant compounds that may provide anti-cancer, anti-inflammatory, and anti-allergenic properties. 

This is day one.  After soaking overnight and rinsing in the morning we have small tails sticking out. 

Day 2...you can see the sprouts really pushing their way out!

Well....Day 3!  I'm getting very excited. PS: Flaxseed sprouts did not go as well! 🤣

Moving into Day 4 was a big jump. Plus I hide them in the pantry so they stay in the dark. 

So now we're getting into the final day. I move them to indirect sunlight to allow them to turn green. 

Oh yeah!  Ready to eat. These little babies are filled with protein and vitamins. Great especially when you can't garden in the winter!  

Not too shabby. 

Chickens Chickens Chickens

 COVID-19 made 2020 almost unbearable.   Almost. 

Remington came to live with us right before my birthday. 

My niece was born!  Isn't she a beauty. 

Then...I became a chicken mom.  Seriously. No one would have ever thought I'd love and snuggle chickens. Not even me. I was terrified of them when we first got them. No clue what we were doing. 

We went to Cal Ranch for dog food and bam...I suddenly have 6 baby chicks. We talked with the guy at Cal Ranch for a very long time. I wanted nice chickens. I got two Sapphire Gems, two Americaunas, and two Buff Orpingtons. 

Their feet were so creepy to me.   The kids took constant care of them while we had to work to keep Bella away. 

Finally after living in the basement for about two months they were ready to move to the big house!

We got our first eggs!  Sunny lays the absolute biggest eggs. 

Sadly we lost Cheeks shortly after. She flew over the 4 ft fence right in front of Bella. We were driving back from Moab and Haven was home alone. 

The only photo I have of Cheeks. 

Now I'm almost one year in on raising these chickens. Learning as much as I can. I finally after 45 years have a true hobby I love.