I Jinxed It

Well all this year I've been feeling grateful that "at least I don't have vertigo anymore" and then suddenly this past month, I started getting vertigo a ton!  Should have knocked on wood.  

The beginning of December was nearly every day, and then it tapered off for a week or so and started back up again a few times per week.  Luckily its changed the pattern though and it lasts a few hours instead of all day.  So hopefully that part of it doesn't revert back.  It adds an element of unpredictability that is really annoying.  

I WISH I could figure out what my triggers are.  Is it gluten, chocolate, caffeine, smoked meats, artificial sweeteners, etc.  I could go on and on.  Stress?  Sleep? Hormones? Too much exercise?  There doesn't seem to be a rhyme or reason.  Its so random it is really hard to figure out.  I've read a lot of people's regimens.  

At any rate, I complained to my friends and sisters and was so grateful to get some good leads for ENT's that specialize in Meniere's disease.  My last Dr retired.  

Last year Miles told me, "Mom I was listening to Joe Rogan and Dana White had the same thing you have!"  The funny part of the conversation was that suddenly he was seeing my struggles with this as more legitimate because the president of the UFC has this too.  This is how Dana White described it:

“This thing is indescribable. People can’t deal with it. It drops you. It puts you down. You can’t open your eyes for hours or sometimes days. You have to keep your eyes closed. Every time you open your eyes, you throw up. And it’s pain like you can’t imagine. You start sweating buckets of water. You can’t open your eyes. You curl up into a fetal position for hours or days. You just lay in bed and pray you fall asleep. You want the room as dark as you can get it. I’ve been traveling all over the world for 13 years. I’ve had the flu. I’ve had food poisoning. I’ve had just about everything you can have, and it doesn’t faze me. I just keep going. This thing puts you down.”

Kristin Chenoweth also has Meniere's, and somehow reading about other people who have it does make me feel a little bit validated that I'm not the only one who struggles with the random element of this:

“I don’t want to appear weak,” she admits. “But the older I get, the more I go, ‘I have this, and today might not be the best day,’ and that is very freeing.” Because even a Tony winner has to take five sometimes.

I recently read an article about another musician, Chris Potter that has Meniere's.  

"Around 1997, when he began to play the vertiginous music of Dave Holland, Potter began to experience periodic dizzy spells that came on without warning and lasted for hours. It was diagnosed as Meniere’s Disease, an inner ear condition, and made Potter—who gave the title Vertigo to a 1998 two-tenor date with Joe Lovano, and a Kurt Rosenwinkel-Scott Colley-Billy Drummond collaboration—almost completely deaf in his left ear.

“It was an extremely stressful time, a nightmare both from the stress of, ‘Wow, I’m a musician, and I’m losing hearing,’ and, ‘Okay, I’m a traveling musician, and I have to leave at 5:30 in the morning here to travel from Umbria to Finland, and I can’t even get out of bed because I’m nauseous and the room is spinning,’” Potter says.

“I got treated, had a couple of different surgeries, but I don’t think they really helped. I think the illness took its course, and after a certain point I also realized that I somehow had to take responsibility for it myself. I decided, ‘Okay, I’m going to be cool. This isn’t going to ruin everything. I’ve lost what I’ve lost, but I’m not going to let it stop me.’ I think it’s one of those tests that we all have in various ways at various points of our lives. Something happens that isn’t exactly what you want, and you have to figure out how you want to react to it. These are the things that end up defining who you are, and although I’m not glad it happened, I think I derived some strength out of it in a way that I wouldn’t have without it. It even has its advantages. I put the drums on my left, and I can sleep through stuff.”

So I guess this all makes me feel a little better.  I used to run marathons for fun and I had five babies without pain meds.  I'm not a wimp.  But complaining about my health makes me feel like a wimp.  And making excuses makes me feel like a wimp even if they are valid.  I hate committing to something and not being able to follow through.  I have this weird thing where I feel like people will think I'm faking or something, which is dumb cause I'm not the kind of person that wants to sit in a dark room all day if there is any way not to.  But somehow I still get in my head about it.

Ear Update

Last night Jared got a late phone call in bed.  I turned over to lay my good ear on the pillow and I was amazed at how little I can hear with my left ear now.  Like almost nothing but the ringing sounds like there is a sound machine on that drowns out what little there is left.  Its a weirdly scary feeling.  I feel extra vulnerable when I can't hear.

So now if I ping my phone with my watch, I can't tell the direction its coming from.  When my alarm goes off, I will feel it rather than hear it.  So I felt the buzz of my phone on my bed.  But I couldn't hear the alarm.  And today I couldn't hear the customer service lady on the phone so Soren had to help me understand what she was saying.  

On Sunday I woke up with a little vertigo and could barely hear the speakers and the other noises actually made me feel sick.  Its weird that noise can make you queasy but it actually can and apparently its not uncommon with Menieres Disease.  

Yesterday, I had to make a police report since one of our cars got hit in a parking lot and thankfully a nice person witnessed it and left a note.

The police officer would only speak with me through the glass.  I couldn't make out what he was saying at all.  I mentioned I have hearing loss.  So he started impatiently yelling through a microphone that cut out every other second.  Which obviously was still very difficult to hear.  The other guy that worked with him was mortified.

I wanted to cry.  I feel like an old lady, "what?"  "what?"  all the time.  And sometimes people get impatient with me like I wasn't listening to them, but really, I just can't hear very well unless I'm facing whomever is talking with me, the volume is good, there is no background noise and I'm somewhat close. 

I'm very grateful to have one ear that still hears alright but man I'm pretty sure hearing aids are in my near future.  I've spent the last year hoping this would miraculously go away (which sometimes it does for years at a time) and it hasn't so I think I'm going to try the hearing aids.

Good News

 Flares are back!  

And I am doing a happy dance!  I know because my girls said they are cute and I bought them at Anthro.  So let it be known that we no longer have to wear skinny jeans.

NYC Marathon!

Jared woke up early with Monet and walked her to the New York Public Library so she could board the bus to take her to the start line an hour and a half away.  She wakes up three hours before her race starts to eat and has peanut butter toast.  She has a very strict plan of what she eats and it is always the same.  She eats certain gels during the race, and has tested out different kinds and knows what works best.  But even despite all those variables staying the same, there are some things you just can't control.

She was a little worried because the weather was unseasonably warm at 74 degrees and 80% humidity.  Hawaii is usually 70% if that gives you an idea.  It was a little cloudy so that was good!

Monet has a tough time in the heat though.  Her heart rate gets really high.  She sweats like crazy and has to drink a LOT of water to keep hydrated. She started out and was feeling fine for the first few miles, but  by mile 9 or so her stomach was cramping up and she was super hot.

She knew we were going to be at mile 18.  She texted me to tell me she wasn't feeling well and was slower than normal.  We were already tracking her though through the app and we knew where she was.

We met up with Angela, Courtney and Michaels family!  It was so fun to be with other spectators we knew and especially convenient that Michael and Monet had the same start time and we could cheer for them both!

By the time we saw her she was a little emotional.  She had promised herself a little break when she saw us and she needed it.  She stopped for a few minutes and then continued on.  She texted 20 or so minutes later to ask if she could quit.  She was dry heaving and worried about puking and just didn't know if she wanted to do it.

I told her that I trusted that she knows her body well and that if she's feeling really awful that you need to do what you need to do.  I do NOT want her collapsing.  Especially with her heart defect that is always in the back of my mind when her heart rate gets too high.

I also let her know that sometimes its a mind over matter thing and that you have to stay in game mentally too and "not listen to your inner b"  ala David Goggins.  Its a tough call sometimes!  And one only she can make.

In the end she kept going, walking as needed.  She had this cute high school gym coach named Albert that stayed with her and kept her focused.  When we saw her at mile 23 she said "hi" quickly and then hurried to stay with Albert.  She knew she needed the encouragement he was giving her.

We loved seeing all the other runners!  One guy was in a Buzz Lightyear costume.  Another Spiderman, and there was even a Big Bird.  Wearing a costume when it is hot and humid sounds so miserable.  But it was entertaining for me!

We saw Richard Whitehead who was born with no lower legs and has run 75 marathons with prosthetics!  I was thinking, man what is my excuse?  Incredible!  Another wheelchair participant was really struggling on the long hill at mile 23.  And the crowd just started cheering for him and he was able to get going again.  It looked tough!  I loved seeing how everyone had their names on their shirts! I need to get one of those for Monet.

Finally Monet finished!  4:18!  Such a relief.  She had to walk about a mile to get out of Central Park.  And we had been planning to meet up with her at the family meeting spots but we walked to her instead because she was completely spent and couldn't even think about trying to come find us. 

She was so much better by the time we saw her!  Her tummy still super crampy and she was wiped but she was happy and relieved to be done.  Pretty psyched about the medal and her decision to finish the race.  I was glad to see her happy and smiling.  Yes a little disappointed too.  But that's part of the deal with racing.  

We went to get some food after at Maison Pickle!  Such a fun place.  Monet had a group of grandmas that clapped for her at the bar when she walked in with her marathon poncho.  She was able to eat and her tummy was only cramping when we walked.  

I love how everyone gets so excited about the marathon!  Even in the airport people were wearing their medals and race shirts.  Its a fun energy!

Everyrace is a different story! And sometimes they aren't your best but those days make you really appreciate when everything goes well and you get a great time.  So proud of Monet for doing her best. 

And for all the work and effort that goes into training!  She's excited to have a break from running and to do more gym workouts and have a little more variety for awhile.

Lunch with Jen, Chinatown and Hamilton (for me)

 We slept in!  It was so nice!  We knew Monet would get little sleep the following night.  

We met up with Jen for lunch at the Black Barn.  Wow it was amazing!  And fun to hear how their business has weathered the coronavirus as a restaurant in NYC.  I was so glad to hear things have been good for them since the reopening.  They have a huge beautiful restaurant and their events are way up so that is great news.  

Jen is my only cousin that is my age!  I love her adorable kids and it is always fun to hear about life in the city!  She worked as an event planner for Marriott when she was probably only 21 or so and then applied for a job with the Waldorf Astoria in NYC (where she later met her husband John the head chef) and moved out East!  And has stayed ever since.   I love hearing about her life. 

She's started homeschooling her first grader so I imagine a lot of her time is raising three very little kids.  It was super fun to be around the little wiggly boys.  I felt for them since it was a long lunch and they were so patient.  Its been so long since I had a little guy.  Her youngest said that I was his "best friend"  awwww. 

Later we went to do a little shopping in Nolita/Soho, and then did foot massages in Chinatown and had a quick carboloading dinner in Little Italy.  The foot massages were so fun.  My favorite part was Monet and Simone comparing their weird feet.  Monet was down to 6 toenails last month.  And Simone has knobby bumps all over from her climbing shoes.  They were cracking up.

We got some yummy boba tea and mango rice in Chinatown and found a good last minute restaurant in Little Italy!

We hurried back to the hotel and at 7:59 we made it to the Hamilton box office where I was able to get a single seat for that night.  Again, center orchestra just a few rows back from the stage.  I've been waiting to see Hamilton for a long time and have enjoyed the music for awhile now.

It was so fun to see it all onstage!  Everyone else was happy to have an early night in and rest.

Too perfect not to get a photo with the Monet ad bus

My little besties!

In Marathon runner vs Climber, I say climber wins for the weirdest feet hands down

New York Top of the Rock and Music Man

 This was the best day!

We went to The Top of the Rock and saw the Rockefeller Center area, St Patricks Cathedral, and did some shopping.  We ran into Ryan and Julie just as we were leaving The Rock.  It was so funny.  We also have been in Hawaii, and in London at the same time as them without even planing it.  Even same hotel in Hawaii.

We had an early dinner at Olive and Fig and it was my kind of place!  Such a cute artistic environment and really good food with a lot of different flavors.  

And after Jared and the kids went back to the hotel and I went to a couple box offices and got us Music Man tickets!  Which I wrote a whole post about.  GREAT DAY!

New York City Pre Race Fun

Monet has been so excited for this race!  She loves raceday and has a routine before each one.  She has tagged along to New York a couple times with Jared on doTERRA work trips.  It was so fun to take Simone for her first time too!  Good for these girls to be together.

First day Monet went for a run in Central Park.  And Simone was excited to hit Central Rock climbing gym.  We went along with Simone and she loved having a chance to climb and it was fun to be at a new location for a change.  We rode the Citibikes around.

Monet was so excited to go to the expo.  Its always fun to see their swag and pick up her packet and take a few photos.  

We stayed at the Marriott Marquis so we could use our points.  It was fun to have a view of Times Square from our room.  We went to Bond 45 for dinner since it was right out the door and so easy!  It was delicious!  I loved their broccoli pesto.  

The Music Man

 We had the best time in New York!  A big highlight was seeing The Music Man.  

I was a townsperson in the high school musical The Music Man when I was 10 I think and I felt really cool to be with all the older kids.  It was so fun to be a part of.  So The Music Man has good associations for me.

Friday night I went to the box office an hour before the show and fortunately they had four seats available center orchestra on the fifth row (normal prices too)!  We were super excited.  

It was a GREAT show.  We loved Hugh Jackman and Sutton Foster.  Both so engaging and so funny.  It was awesome to hear the music again.  It was fun to see friends there!  We went out to Cheesecake after with Ryan and Julie and saw five friends from home.  Lots of people in town for the marathon!

Thanks Angela for the recommendation!

Dopesick: Motivation for exercise

Last week I started watching Dopesick while I rode the stationary bike.  My mom recommended it and it's so interesting.  It totally got me excited to workout so I could watch another episode.  Watching people's stories spin out of control is weirdly motivating health wise.  It's like I can relate to some of their issues on a different kind of level.  This is a dramatized series and I don't think the characters are real.  But I did look up a lot of the marketing they depicted and that part was accurate!

I had read news articles about the Purdue Oxycontin lawsuit and their role in the opiate epidemic.  But I didn't really understand the full extent of what happened.  How could a pharmaceutical company be liable for people becoming dependent on their drugs?  Everyone already knows opiates are addictive.  I didn't know the history of their deceptive marketing to both doctors and patients.  

My history with painkillers is that I was raised to avoid them.  (Thanks mom!) I've really only taken one or two when I got my wisdom teeth removed and had a dry socket.  Even when prescribed stronger drugs, I take ibuprofen instead.  Jared has had them when younger for his broken wrists and it made him sick and he hated the side effects.  I'm grateful to have had a parent who warned me about these things.

Once in 2005 or so Jared had a dentist try to just give him oxycontin for a toothache so that he could schedule him a week later.  We said no thanks. We found someone else that can get us in quickly.  I had worked as a dental assistant and typically if someone called their dentist because of an abscess, the dentist would squeeze them in.  I stayed late many many times because of these dental emergencies.  I was annoyed.   Primarily because we had seen a friend who had always been a disciplined, upstanding person that started taking oxy for back pain and it really messed up his life when he got addicted.  It seemed irresponsible that a dentist would offer a week or two of opiates to make their schedule work better.  But maybe the show provides more background on why that might have happened.

This series was so eye opening!  It was really sad to see how the company could pursue such a deceptive marketing strategy.  The FDA took very little action for decades, aside from a scolding letter, it was really not proactively watching out for the patients at all.  Their position now is STILL one of defensiveness.  They need to take a hard look at what DIDN'T work and the opiate crisis and make some real changes.  It's really sad actually.  

If you really want to see how a company like this operates from the inside, you need to watch the show.  Purdue's actions in promoting the drug as safe and less addictive resulted in a huge increase of overdoses, emergency room visits, babies born drug dependent, crime, foster care issues, etc.  It resulted in a huge social impact.  I think the most maddening part was that after all they had done to lie to doctors and patients, they used deflection to blame the people who became addicted.  Purposefully and aggressively portraying them as weak.  So wrong.  

Their marketing was originally designed to get people to trust their product was less addictive than other alternatives due to the time release coating.  They doubled their sales force when Oxycontin was released.  They targeted doctors who deal with chronic pain patients and trained their reps to say that only 1% of people using Oxycontin became addicted.  (this was based on a VERY faulty non-real world application of inpatients in a hospital burn unit.)

First they obtained a label with wording written by Curtis Wright, director of the FDA.  Wright later left the FDA and within a year or so got a job at Purdue making $400K per year.  

• “Delayed absorption, as provided by OxyContin tablets, is believed to reduce the abuse liability of a drug”

• “Iatrogenic ‘addiction’ to opioids legitimately used in the management of pain is very rare.”

In the following years they ignored evidence that it wasn't any less addictive.  Their solution to people becoming addicted (and needing higher doses to stay effective) was to promote higher dosages to doctors.  They created a term "breakthrough pain" and told doctors to "personalize the dose".  Which also sold a lot more of their drug and boosted sales.  The later promoted the invented term of "Pseudoaddiction."  Which is gaslighting the doctors and patients into believing people were not actually addicted and just kicking the can down the road and making more money in the meantime.  Anyway, there is so much more.  It's pretty concrete.  Purdue executives plead guilty and were fined $634 million. Their company is now bankrupt and yet the Sackler family still retains over $10 billion dollars in assets. 

Moral of the story:  Don't trust people that make billions off lying.  They don't care if they get a $634 million fine.  They still made BILLIONS.  It was all worth it to them.  Be skeptical.  Ask questions.  You don't have to blindly trust your doctor.   Some Doctors blindly trust the FDA, who is blindly trusting Big Pharma.  There are all kinds of problems there.  Consider the inherent bias that exists in this framework and use your brain to think independently.  

Great article from the Journal of Ethics with some of the details and how the FDA and Purdue were unethical:

https://journalofethics.ama-assn.org/article/how-fda-failures-contributed-opioid-crisis/2020-08

Gratitude Month

I was thinking about the cumulative effects of things the other day.  And how my life is different because I was raised a member of the Church of Jesus Christ of Latter-Day Saints.  And something that came to mind, was that I was taught from the time I could speak to think of  and recited the things I am grateful for in my life multiple times per day.

I love that.  I think gratitude really shapes how we think.  Similarly, years ago the Ensign had a Visiting Teaching theme about "how have I seen the Lord's hand in my life today?" and it really helped me to be able to see and recognize the more simple and also present blessings.  I think it really changed me.

I grew up with parents who were very committed to being dedicated parents.  Being a mom and dad is really celebrated in our church culture.  Its also a fundamental part of a strong society.  And as a result I think we are blessed with parents who try.  And like me, my parents weren't perfect.  But like me it is something they cared a lot about and was part of their identity.  

I feel very fortunate that I was taught as a kid the benefit of living free of addictions.  I think the community effect of this results in stronger families.  When a large portion of the people around you are not addicted to drugs, you grow up knowing it can be done and so it is easier.  I feel so sad when I see  shows geared for teens, and it shows young people partying and accompanying messages that this is what people do in college and otherwise and only nerds don't drink.  There are lots of non-religious people who also don't drink--particularly heath conscious people like in Simone's climbing community.  I feel bad for those who became addicted because they underestimated the power of substances!  I wish kids could see the outcomes of both choices.  Sure there is a sweet spot for alcohol intake.  Where it isn't so detrimental.  Unfortunately I don't have a lot of friends or family who have been able to easily stay in that sweet spot range.

Another reason I love the gospel is it helps connect us with our communities.  We are trained to be thinking of ways that we can help others on a regular basis.  It's an active part of who we are.  We have a very large family, and a lot of the service we've participated in and received has been with other family members.  We've had some big needs in our extended family.  And its incredible to look at all the people we know will have our backs if we ever needed it.  

I love that Jared served a mission before we met.  It was tough for him.  He gave up pursuing basketball scholarships.  He left his girlfriend knowing they probably wouldn't end up together.  And he spent time cleaning peoples houses (like hazmat type cleaning) and volunteering at the senior homes.  Teaching smoking cessation.  He honed his public speaking abilities.  He learned to not fear rejection.  It was overall a great learning experience.

I think one of the things that has helped me and my kids is having leadership roles in the church.  It's uncomfortable.  Its hard sometimes, but it also is necessary to push out of our comfort zones and develop skills that we wouldn't otherwise have.  We don't always enjoy having callings, but I have seen how they have helped me to become better.  Organizing girls camp this year and last was good for me!  Even when I didn't want to do it.  I felt good afterwards seeing how this planning took shape and resulted in a fun time for our group.

I love knowing that I have a connection and a lifeline when I need it.  I don't always feel an immediate or clear answer to my prayers.  Years ago, I prayed to know whether we should build a home.  I don't feel like I got a clear answer then.  I went ahead with the building because it seemed like a smart choice.  I spent nearly everyday at that home site in some way.  I went through all the different choices and changes and selections.  It was a huge process.  And then midway through we had our money invested with someone who turned out to be running a ponzi scheme.  I was devastated.  We thought we could still continue on and be okay.  But then the mortgage market changed a month before our house was done.  It became impossible to finish and we walked away from a lot of money that we'd put in with the down payment, cabinets, changes, etc.  It was a super sad and confusing time.  Luckily my kids were little and not aware of our financial issues.   I wished Heavenly Father had just given me a clear "no" when I prayed.  But I feel like it has all worked out and we learned from that experience.  It led us on a different path and to where we are today.  I wish I could pray away all my struggles.  I know I can't.  But I can have help with dealing with them.  That year (2008) blogging really helped me to focus on all the good things I still had in my life.   I learned the proper priority of material things.  That I can be happy without having a lot.  That I am pretty resilient!  Things happen that I can't control.  But I can choose my reaction.  And Jared and I learned how to support each other better.

When I've needed clarity, strength or comfort, I got it immediately.  Sometimes it is so clear and obvious.  And other times it is more subtle.  Several years ago I was sad for one of my kids and the struggles they were having.  I poured my heart out in my closet and said, "Heavenly Father, please help my kid!" and right away I got the answer, "I already am."  That brought me comfort.   I've learned that answers sometimes take years.  And in a funny story that I will relate someday, that specific answer seems more applicable now looking back.  I've written a lot of past posts about these so I'll try not to be redundant.  

Last year, as evidenced by all the blog posts on this subject, I was super stressed about the vaccine mandates.  They affected us in a very real way limiting our ability to travel, attend events, marathons, job limitations and even Simone's climbing Nationals was up in the air.  I resented being depicted as selfish or ignorant and felt sensitive about that.  I  was extremely frustrated.  I read about vaccine related studies and articles obsessively.  Until I got the very clear answer that everything would be worked out in time.  And here we are a year later and the world is in agreement (mostly) that the vaccines didn't stop transmission anyway but are more of a personal health issue and mandates are not moral or constitutional.  Things have changed and it is a huge relief for me.  Still praying for our family in California and hoping their kids will still be able to attend public school.  Trying to "let God prevail" on these things.

We are fortunate to have an eternal perspective on life.  Life certainly sucks sometimes.  But even then, its a classroom.  We are here to learn and grow and continually progress.  And in fact, Heavenly Father knew we weren't going to be perfect.  Maybe that's something we need to emphasize more in the church.  Our creator made us imperfect for a reason.  We are all imperfect humans.  All of us need Jesus.  If we accept that, great, it just part of the plan.  Whatever you struggle with, its okay, and in fact you were made to struggle with things.  The main thing is to keep trying.  Our progress even continues after death.  I was comforted this week thinking of my uncles.  And when I'm sad thinking about how hard life was for Ron, it made me feel better knowing we have unlimited chances.  Death isn't the end for Ron.  I wanted to give him a hug after hearing how he died with some big regrets and knowing some of the things he dealt with and went through.  And I feel grateful knowing that Grandma is there to give him a hug.  And that Jesus can give him one too.  And we can do his temple work.  That's pretty incredible.  The trauma and tragedy he experienced in life can be righted.

And finally, I love the emphasis that religion has on knowing who we are.  I follow this lady on Instagram called Dr. Becky.  My little sister introduced us to her.  She talks about how kids are "good inside" and how to validate and respond to their emotional cues.  I love, love, love those sentiments.  I wish I had Dr Becky when my kids were little.  LDS kids are taught that we are each a "Child of God."  Sometimes its hard to understand what that really means.  We are all "good inside" and we all have a divine heritage.  We can mess up and make mistakes, and if we practice repenting and saying we are sorry, life is better!  We are even healthier because of it.  And likewise we practice forgiveness to others who have wronged us. 

I was going to bear my testimony the other day in church, but I was too scared.  When did I start worrying so much about what people think of me?  I need to do less of that and just be me.  But whatever.  Here it is on my blog instead.