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National MS Society Public Policy Conference 2023

I was invited to attend the National MS Society’s Public Policy Conference in Washington, D.C. at the beginning of March. We kicked it off on Monday afternoon. There were about 200 people there, many decked out in orange apparel- people living with MS, people whose loved ones have MS, MS medical personal and MS Society staff.

Sarah in front of the U.S. Capitol

John King from CNN was our Keynote speaker Monday afternoon. He shared his MS story. He was diagnosed with MS in 2008 and shared the news publicly on his TV show in 2021. He answered questions about his MS journey and about his work covering politics.

MS Activist Briana Landis with CNN’s John King

Our First Priority- Support $22 million for the MS Research Program and $7.5 million for the VA MS Centers of Excellence in FY24

Next, we learned about our first priority- Asking Congress to Increase Funding for the MS Research Program (MSRP) and the VA MS Centers of Excellence. The MSRP is the only federal research funding stream specifically for MS. It is funded through the Department of Defense. The MSRP funds High Risk, High Reward studies that wouldn’t normally be funded by the National Institute of Health. For example, the study that found that Epstein Bar Virus triggers MS was funded by the MSRP.

The VA MS Centers of Excellence were established to help Veterans living with MS. There are 70,000 veterans living with Multiple Sclerosis and 50,000 of them get their care though the VA MS Centers of Excellence. New research shows that there is an increased association between deployment during military service and an increased risk of developing MS, but we don’t know WHY- Is it stress related? Is it service location related? Is it because military personal have access to healthcare and so it is diagnosed more often?

Funding for the VA Centers of Excellence was funded at $4.5 million in Fiscal Year 2023, but we are asking if Congress will support asking the DOD to increase their budget to $7.5 million in Fiscal Year 2024. We need Congress to increase funding for both of these very important programs, that are helping to move us closer to a cure! We especially owe it to our Veterans to get them the excellent care they deserve. (Statistics provided by the National MS Society. You can read it more about it here: https://tinyurl.com/6vbcxf4n )

The U.S. Capitol

Our Second Priority- Congress Must Address Barriers to Air Travel Accessibility

Have you been on an airplane? It’s not just wheelchair users that have issues getting on and off a plane. I use a walker and its nerve-wracking to fold it up to hand off to an airline worker with a line of impatient passengers waiting to get to their seats. I also have bladder and balance issues, both gifts to me from my MS. For myself, if my flight is longer than an hour and a half, I won’t drink anything on the plane so that I (hopefully) won’t have to use the bathroom. It’s hard to climb over people to get to the tiny aisle and then struggle down that to make it to the bathroom. On my flight home from DC, there was a Momma with a baby who needed to change the baby’s diaper. I was trying to figure out where she would do that in the lavatory- in the sink? Lay the baby on top of the closed toilet seat? She apparently got it done but I had many questions on how. Airline bathrooms are not accessible to anyone in my opinion.

Safe airline travel is an Equal Rights issue. The ADA was written to make places accessible for people with disabilities. Every other mode of transportation has become accessible- buses, subways, trains, and cars. Even Universal Studios Hollywood has an accessible way to move you around different levels of the park via private bus transfer! However, airlines have never made planes accessible. Instead, they want to fit as many seats on a plane as possible because people in seats are what gives them their record profits. If you are disabled and cannot walk, they literally strap you into a seat and you can’t move from that seat until it’s time to unstrap you once you’ve landed.

Many people with MS use a walking aid and many people with MS consider their walking aids as a vital part of their identity. Airlines are notorious for damaging customized wheelchairs. (You can read the story of Engracia Figueroa, a disabled activist who died after United Airlines damaged her wheelchair here: https://tinyurl.com/6bxwfp2s ) Customized wheelchairs are specifically made for the person who uses it. They cost thousands of dollars. If they get damaged when they are thrown under the plane, it’s not like a spare customized wheelchair was packed for the trip. It’s unfair and ableist to think a person can and should just use a standard wheelchair.

The current law says that it is against the law to deny people with disabilities the right to airline travel but there are no laws that require basic accessibility. Airlines don’t have to replace your mobility device. If they choose to, they have no set time limit in which they need to replace it for you. Very often they use a third party that they choose to get a replacement estimate and often they don’t provide enough compensation if you need to have it replaced.

How can Congress solve these airline issues? They can pass the Air Carrier Access Amendments Act (Baldwin/Titus) (H.R. 1267/S.545) this would mean as new planes are built, they could be designed to accommodate people with disabilities. You can find more information here from the National MS Society: https://tinyurl.com/yckkt3wx ) If you have an airline story, I encourage you to write a letter to your Congressperson and let them know why this is an issue for you or your family. Airline Accessibility affects ALL OF US.

Sarah on her flight home from Washington D.C. accidentally dressed as a Walk MS Billboard

Wednesday was HILL DAY! I was given four offices that I needed to set up meetings with before we got to D.C. As this was the first time I had ever attempted to set up Congress office appointments, I didn’t realize that everything in D.C. moves very fast and scheduling meetings were finalized much closer to our arrival date. I was so excited, I could barely little sleep the night before.

My team had meetings set with one Senator’s office and the other meetings were with our House Representatives offices. In our training the day before, it was mentioned that we might have meetings in the hallways and that doesn’t me anything other than the offices have limited meeting space. I was really glad this was pointed out because I would have taken it as a bad sign to be in a hallway but most of our meetings were in fact, held in the hallways. We shared our stories on how the passage of both of these priorities affected us and asked for their offices support on them.

Outside of Senator Feinstein’s office
MS Activist Blake Goehring, Rep. Torres staff, myself and MS Activist Jon Strum (Host of RealTalk MS podcast)
Blake and myself
Staff from Rep. Calvert’s office, myself, Jon and Blake.
Myself, Blake and Jon

Storytelling comes naturally to me. I have always been open about living with MS and how it affects me and my family. Where I struggle is how to get my story out to the ears that need to hear it- Congress, medical staff, newly diagnosed people. If you want to share your stories and take action too, you can use this link to sign up to be an MS Activist with the National MS Society: https://tinyurl.com/4d7x95vh

The more voices we have the better.

Sarah outside of the Capitol
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Mom Guilt

For the first ten years of my life, I was raised by a single mom who worked full time and went to school full time to earn her Masters. She had to miss most of our school functions that took place during the workday but always took us to get 25 cent hamburgers on a Tuesday night to celebrate whatever we had earned at school. She didn’t get to be Room Mom or go on fieldtrips. She would go to our teacher conferences before work. She didn’t get the chance to be a stay-at-home Mom with us, but I always felt taken care of by her and knew she’d be there for the times I really needed her.

I, on the other hand, have gotten to stay home with my kids since they started school because I am declared disabled due to my Multiple Sclerosis diagnosis. I make my kids lunches (frantically) every morning, I attend their award ceremonies at school, I drop them off and pick them up every day, and I routinely guilt myself over the things I don’t or can’t do for them.

Guilt Lurking Everywhere…

Lately, I have been reminiscing about when my tweenagers were toddlers. I was diagnosed when they were almost 3 and almost a year and a half. I had lost feeling in my left leg and ended up in the emergency room where I was eventually diagnosed with MS later that evening. We made jokes that my son and I were learning to walk at the same time. (He could already walk but walkers make fun jungle gyms for toddlers.)

Often when it’s too warm, I’m lying on the couch scrolling FB or Tic Toc and a video will play. Maybe it’s a video of a mom plating her child’s lunch and I will find myself thinking, “Maybe, if I hadn’t had to work full time when my babies were babies, they would be better eaters now.” Maybe, if I had been able to teach them in the Montessori school method, they would keep their rooms cleaner. Maybe, if I was more focused when they were young and kept them on a strict schedule, they’d be more organized now. Maybe, maybe, maybe…

Photo by mentatdgt on Pexels.com

And The Band Played On. I Didn’t…

My daughter is in marching band. I joined the band PTA in summer before school started. I have donated snacks and water for the band to enjoy after their practices. We committed to the first fundraiser before the school year had started and were able to turn in the money on the second day of school.

This past Saturday, when I dropped my daughter off at practice in a triple digit scorcher (heat and MS don’t mix) I felt guilty for the 2 hours she was there that I didn’t stay to help get their uniforms organized for marching season.

In that heat, I wouldn’t have been any help. Let’s be real. The heat keeps jumping in California from hot to Hotter to OMG PLEASE MAKE IT STOP HOT! My body is in fits. I’m uncomfortable and get heat rashes. I feel exhausted. My cog-fog gets bad. It wouldn’t make since for me to volunteer to help. I would have just slowed us all down. This is my reality. I know this.

It was 104*

Why Do We Beat Ourselves Up…

I’ve been thinking about why I guilt myself when most people would agree I’m a pretty involved mom. Most would say I’m a pretty great mom. So why then, don’t I feel like I am a good-enough mom?

I think part of it is, that I live like I am on borrowed time while living with MS. I want to jam as many memories and moments into my life as possible, if something happens to me, I want my kids to always know that they were my whole world and to have those memories and moments to hang on to, but I often question if I could have, or should have, done more in the moment.

Yes, it’s really hot but maybe we could have baked those cookies. Yes, we did the fundraiser but maybe I should have volunteered with more fundraising ideas because I am good at fundraising. Yes, I could get up early to do band carpool. But I didn’t say yes in those moments, and now I feel like I should have pushed myself harder to say yes, even at the expense of my health/sanity.

I have to think of participating in events in terms of energy cost or physical movement cost. My leg routinely goes on strike with no warning. I can’t be committed to manning the snack bar in three weeks, when for about 8 months of the year, California weather is too hot for me to function in comfortably.

I am also aware that my disease could progress at any moment. It’s been almost 4 years since my last huge flair up and at the back of my mind, I’m wondering when the next might hit, because my history with MS shows my disease modifying therapy works well for about 3-4 years until it suddenly doesn’t. I guess it’s like waiting for the next big earthquake- we haven’t had one in a while; it’s been too quiet. Its best to be as prepared as possible.

And Then It Hit Me…

My kids having me (a disorganized, cluttered, tired AF a lot of the time, always having bunches of small projects going on at once, in varies states of completion, using the wrong words in sentences but almost always able to laugh at myself about it) as their mom, has taught them compassion, resiliency and that they have the play book to handle whatever life throws at them. They know to always cling to the ones that love you, the ones that lift you up and the ones that are there for you during the really freaking hard parts.

Photo Courtesy of National MS Society

I have decided that if they’re not annoyed/mad/sad that I didn’t join a parent committee or bake cupcakes for a fundraiser, then I am not going to feel any differently either. I’m literally trying to do the best I can and do what I am able to do, and that is enough. They’re going to remember when I was there for them in the big moments, that I used every ounce of my energy I had to get there.

Sometimes being the best mom is homemade popcorn and snuggles on the couch. Sometimes, the moments when you’re doing nothing special are the most precious of all.

All of the time, I need to remind myself, I am doing more than enough because I’m doing what I CAN. It doesn’t need to be more than that. There are no Best Mom trophies for the moms that beat themselves up when they’re showing up in the first place.

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Three Things I Wish I Had Known At The Beginning Of My MS Diagnosis

On July 22, 2012, 10 years ago, exactly 100 days before my 30th birthday, I was sitting in the Emergency Room waiting to find out what was going on with me.

Two nights earlier, we had been at the county fair and I was having trouble walking. It had started earlier that day at work. My leg and foot kept not picking up all the way and I was stumbling around the office. I also had patches of my leg feeling like it was asleep- that painful pins and needles feeling you get.

That night at the fair, my walking speed had slowed down substantially in just a few hours. I was thankful that I had my kids stroller to hang on to as we wandered around. Eventually, my husband said it was getting late and we should head home to put the kids to bed but we both knew it was really because of my walking.

I went to urgent care after work on Friday. The doctor poked my leg and said he didn’t know was going on but to make an appointment as soon as possible with my Primary Care doctor. However, by Saturday morning, when I heard my son crying, I went to stand up from my bed and I completely faceplanted on the floor. When I tried to stand again, I realized I couldn’t feel my left leg at all. It wasn’t asleep. It was like I no longer had a leg. I couldn’t feel anything.

Back at the hospital, because I had no feeling on my lower left side, they ordered a CT scan to rule out a stroke. When they wheeled me back to my waiting room, the nurse said they also wanted to run a MRI but that it would be quite awhile because they had other people scheduled for it first. She came back within 5 minutes and said that they would be taking me NOW. I knew that meant they had to have seen something on the scan. My thoughts immediately went to brain cancer.

I won’t bore you with the rest of my hospital story. I was very fortunate to be diagnosed with MS as fast as I was. It can take people years to confirm a Multiple Sclerosis diagnosis.

Image: Sarah in 2012. She’s been home a day from the hospital and is trying to figure out how to “rock” this walker.

Here are 3 things I wish I would have known as a newly diagnosed MSfit (a person kicking ass and living with Multiple Sclerosis)

#1- If People Offer You Help, Take Them Up On It.

I was in the hospital for 4 days before they let me go home with steroids and a walker. My parents were on a cross country road trip. They had wanted to turn around to get back home to me but I told them to stay on their trip. My Mom still has self-induced Mom-Guilt about not immediately coming home. In their absence, I had a handful of Aunties who came and sat with me and loved on me everyday I was in the hospital.

One of my Aunts was sitting with me one day, when she offered me the best piece of wisdom: When people offer to help you, let them.

She explained that it helps their heart just as much as it helps yours. It might just be a casserole, but to the person offering it to you, they have taken the time to think of you, to think of a way in which they can help you, and they’ve taken the time and energy to help you in a way that they can. She put it much more eloquently than I am now, but I took her advice to heart. Anytime someone has offered me assistance, I answer them honestly, instead of just saying “I’m fine” when someone asks. Over the years, I have accepted help in ways I would have been too proud or embarrassed to if I hadn’t been given this advice.

Image: A blue and orange wreath Sarah made for MS Awareness month with a sign that says: “In this family no one fights alone”

#2- Take The Time To Mourn The Old Version Of You

As a person living with MS, who occasionally rocks a variety of walking aids, can I tell you what the most annoying thing is about how people act towards me?!

There are 2 actions by others that make me super annoyed. It’s a tie because they both suck and both happen to me often enough, that one can’t be worse than the other: A) People rush to beat me to a door so they won’t have to hold it open for me AND B) people often talk LOUDER to me when they see me in my walker. On days I am feeling particularly snarky, I always tell them I’m not struggling to hear them because my ears work just fine.

One of the things that I did wrong in the beginning of this journey was not taking the time to really explore what being diagnosed with an incurable disease feels like. Multiple Sclerosis has one of the highest rates of depression among neurological disorders.

When I left the hospital, I was told maybe I would walk normal again or maybe I would always need a walking device; there just wasn’t really anyway to know except to see what happened.

This was terrifying. I had two very young kids and I couldn’t even start to think of how sad their lives would be having a Mom who couldn’t keep up or do things with them. There is a stigma about having a disability. The ableism that is built into our everyday lives is so engrained in our culture, that even you might not realize how much crap you are talking about yourself. Adding to it, is that there is a ton of outdated information out in the world about living with a disability. For example, you will not automatically end up in a wheelchair if you have MS but society still tells us you will. Many people are able to have functional lives with medications or physical aids. MS is not a death sentence.

When people would stare at me with my walker, I felt their discomfort. I learned very quickly that my presence, a young person using a walker, made other people very uncomfortable. I immediately learned to make jokes about my situation, to make other people laugh, so we could change the subject to something other than poor little me.

In doing so, I hurt me the most.

I took all those unbearable feelings: sadness, shame, depression, pain and I buried them deep, deep inside of me. When I went through the process of applying for Disability and I had to “prove” over and over how disabled I was in order to qualify, I spiraled even more into darkness. Eventually, after a very scary incident, I finally started seeing a therapist and was put on anti-depressants so that I could really work on these huge emotions I was going through daily for years. In addition to therapy, I started looking for people going through the same thing as I was.

#3- Find Your People

I am a super extroverted person. I need social interaction to feel joy. I’m not exaggerating. There are days my husband barely has time to walk in before I meet him at the door talking a mile a minute about the groceries I bought or the memes I saw online today. In 2012, I was home all day long with two kids under 3. I needed adult interaction but also I was looking for MS connections.

I started looking online for MS groups/ people on FB and IG to talk to to who could understand what I was going through. Since then, some of my very best friends are people I have yet to actually meet in real life. I have met my British Bestie, my Homie, my friend who is a Marketing guru, numerous people knowledgeable about whatever I am trying to figure out in the moment (blogging, gluten free, etc.). I have “met” so many other people who have been where I am and people who are newly diagnosed looking for support. So many of these people know things about me that I would only share with my closest friends because these people have become MY people.

Image: Walk MS 2020 surrounded by family and friends in a socially distanced way

Special Shout Out: I do have a MS Fairy Godmother that I am very close to. She is local to me so I have been able to give her hugs in real life. She is my cousin’s former boss and when my cousin told her I had been diagnosed with MS, she immediately text me and told me to reach out anytime if I had questions or needed advice or whatever. She has supported me literally since day 1, ten years ago and continues to do so.

Bonus #4- Get Involved

I have found great joy in getting involved with MS events and projects. It really helps me feel like I am fighting back against my MS in a tangible way.

I joined Walk MS the year I was diagnosed as a way to distract myself from all of those dark emotions I was talking about earlier. The National MS Society does so much for people living with MS. As the years have gone on, I’ve gotten more involved with the MS Society. Currently, I am a District Activist Leader which means I meet with federal and state legislators to share my story and ask them to support policies that the National MS Society is working to get passed, like lowering prescription drug costs for patients. The National MS Society also is the largest private funder of MS research. They fund High Risk/High Reward projects that might not otherwise get funded for being too audacious.

Image: A picture of Sarah at a virtual Public Policy Conference because of Covid Precautions

Hopefully some of these suggestions can help you on your journey of living with MS.

More than anything, I hope you find the people that can help pick you up when you’re down, the people that have answers to your questions, the people who totally get that MS sucks. Feel free to reach out to me on social media if you need to.

Remember, there is no time limit to how fast you have to figure out what you’re feeling about living with MS. You don’t have to accept it by a certain date. You don’t have to have all the answers right away. I think the most important thing is to be honest with yourself about HOW you’re feeling about it good or bad.

With luck, maybe some day, you will feel like you could help light someone else path as they try to navigate living with MS.

P.S. I am firm believer in celebrating my MS Diaversary as a celebration because even though MS can suck, it has brought many opportunities to my life. I’m signing off now to go to my favorite cupcake spot to buy a GF cupcake to celebrate living with MS for 10 years!

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Christmas In July

The best thing happened today! I scored a video game that my kid has wanted for awhile with a great deal from an early Amazon Prime Day deal. One of my favorite responses when someone asks me where I got something, is to tell them about the deal I scored on it. I’m not sitting around cutting coupons. Honestly, I tried but it costs me as much to get the newspaper as I was basically saving by using item. Since going on Social Security Disability, for years now, I have tried to find ways to stretch our dollars.

After having my kids, I have always bought gifts throughout the year as I find good deals and saved them for birthdays or Christmas in a bin in the garage. The holidays are expensive with outings, gifts, donations, etc. Our family has quite a few birthdays that hit at the last quarter of the year too. We also have to keep in mind that my Medicare deductible starts fresh at 12:01am January 1st.

Over the years I have found a few ways to save money here and there. I am not sponsored by any of these Apps, they are not paying me to share this info with you. I am listing my referral link to each if you would like to join- I may earn a bonus from them if you use my link but it would be in the same way you would get a bonus if you shared your referral link with your friends.

Discount Apps

I use 3 discount Apps every time I shop whether its in store or online- Ibotta , Fetch Rewards and Rakuten.

Ibotta– Ibotta is an online coupon app that you pick the store you are going to shop at, look through their discounts for items that you wanted to buy and after you submit your receipt via their app, they add the cashback money to your account. You can cash out your cashback savings starting at $20 to redeem as a gift card or have it deposited as cash in your checking account.

Bonus: When using Ibotta with a specific stores app with their deals, you can stack the savings. Last week we needed sunscreen: Ibotta had a $1 cashback rebate on Neutrogena Sunscreen, Target had a $2 instant manufacturer coupon on their app and there was a $2 coupon on the bottle! Instead of $8.99, I paid $4.99 in store and then had the $1 added to my Ibotta balance. So really it was like I paid $3.99 for a sunscreen I was going to buy anyway.

If you would like to try Ibotta, you can use my referral link: https://ibotta.onelink.me/iUfE/8cc13c64?friend_code=55onra

Image: a screenshot of a Neutrogena sunscreen cashback offer

Fetch Rewards– Fetch Rewards is literally the easiest app to use to earn gift cards! You shop as you normally would, you take a picture of your receipt on the app, they credit you points that add up. When you have enough points, you redeem for a gift card that you chose from their choices (Amazon, Target, Walmart, etc.) Many receipts count too: Restaurants, home goods, sporting stores, even online shopping receipts count (Target.com, Amazon)! Truly the easiest way to earn gift cards!

BONUS: It doesn’t take very long to earn enough points to earn a $5 or $10 gift card. I cash these out for stores like Starbucks, Bath and Body Works, and Target, and save them for teacher gifts or stocking stuffers.

If you would like to try Fetch Rewards you can use my referral link: https://fetchrewards.onelink.me/vvv3/referralemail?code=F5JAK

Image of a screenshot for the amount of points I’ve earned on my latest shopping trips

Rakuten– Rakuten is an app that gives you a percentage of cashback from online stores. Seriously, there are so many stores to shop at: Dinner subscriptions, pet services, clothing, digital services! You shop, they credit your account with your savings and they send you a deposit to PayPal account four times a year.

As of today, July 8, 2022 until September 30, 2022 if you use my referral link you will earn a $30 bonus when you spend $30 at one of the stores. So basically spend $30, earn $30 back as a cashback bonus that will be deposited in your PayPal account!

You can use my referral link to join here: https://www.rakuten.com/r/SARAYR46?eeid=44752

Image: History of the cash back I have received

Digit– I am a horrible saver. Like really bad. I have tried little games like every time I get a $5 bill put it in a jar but I almost always cheat and take the money back out. I have tried to automate certain amounts of money such as $10 every 2 weeks for school stuff throughout the year. I do great at the beginning of the school year but as the year goes on, it’s just to easy for me to move the money into our main account.

Enter Digit an automated savings app that is connected to your online Digit account and not your bank account! I love Digit.

BUT It is not free! It’s $5 a month but for me that is $5 is a bargain!

You can set up Digit as a savings account or as an actual savings money goal and it will take out small amounts of money from your checking account daily and weekly to help fill those goals. Currently, I have a rainy day fund that Digit takes anywhere from a few cents to a few dollars for every day here and there. I also have a specific money goal set for a trip to New Orleans we have planned in October. They take bigger amounts of money to fund that one in the 4 month time frame I had set it up. You can always add money money into your Digit accounts too. When you are ready to withdrawal your money it takes a few days to be deposited. Another great feature is they will not overdraw your account if it is not safe to withdrawal money from it, like 3 days before payday or at the end of the month. If they do over draw you and it is their fault, they will pay your overdraft fees. Your money is FDIC insured as well. There is an investing plan too but I have never looked into it.

If you would like to try Digit you can use my referral link here: http://digit.co/r/byLitb4N3w?ap

Image: My savings accounts balances

Do you have any apps that you use to save any money? I’m always looking for new ways to save a little more. I am not a financial planner and this post is not meant to be used as financial advice.

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With MS, There Is Always A Cost

If you or someone you know lives with MS, you probably don’t need me to point out that Multiple Sclerosis is a very expensive disease to have. According to the National MS Society, medications, particularly DMT’s, also known as Disease Modifying Therapies, which are used to try to slow your disease progression down are billed in the thousands of dollars every month, and in the hundred-thousands if you require an infusion treatment. I always share pictures of my insurance explanation of benefits paperwork because I want people to see the costs to keep me functional. As a country we need to lower prescription drug costs and better access to treatments. I advocate with the National MS Society for MS related issues but healthcare in America is broken, and affects everyone who lives here and needs medical help.

I am grateful to have Medicare to cover the costs of my treatments because there would be no way we could afford this monthly.

You are only one diagnosis away from needing the very best healthcare available to you. Fingers crossed it doesn’t bankrupt you in the process of treating the person you love fighting for their life to receive the treatment and care they need.

This is for four months of medications and treatments to help manage my MS

It’s not just financially that MS costs you, when you live with MS there is a physical and mental cost you have to always be aware of, while weighing the best way to use the limited energy you have.

We had been planning a trip to Hawaii in 2020 when the world shut down and we were finally able to go this week to make up for it. Maui is a 5-6 hour plane ride from So Cal depending what airport you leave from. That meant not only washing the laundry before we left and packing it all up for everybody, I also had to help the kids pack their entertainment bags for the plane ride so that we could all have a peaceful trip. We had to pack snacks. I had to pack various walking aids for the different scenarios I might run in to. I had to take my dog to the dog hotel. Keeping it all straight and getting it all done is mental energy plus physical energy and it all really adds up to get us ready for a 4.5 day trip.

Maui is PHENOMINAL. Book a trip now!!

We were staying in a condo with a kitchen so we bought food while we were there to BBQ and feed the kids when we knew we would be eating something they wouldn’t eat. We made it a game to buy enough but not too much that we would have to throw it away when we left. It’s hard to sticker shock Californians but all the usual food we keep in our fridge and freezer at home was at minimum $2 more per package. We weren’t fazed by the gas prices because it was the same in So Cal, that meant it was in the very high $5/gallon but still under $6.

We went to Ho’okipa Beach to see the sea turtles. Its’s a beach that has tide pools to explore and they had a huge amount of sea turtles on the beach and in the sea. There is a rocky path down to the tide pools. I went as far as we all agreed I could get and then the Hubs and kids went down lower to check them out. The water is different shades of blue than it is at So Cal beaches. Their sand is more pillow soft than grainy like our sand. We have more shells and they have more rocks in the sand. The water is warmer in Maui too.

While I was enjoying the view, I saw what I thought was a sea lion shaped rock but then it yawned. When I shared the picture on FB my friend said it was a monk seal and there are less than 1200 living in the wild, so I guess being stuck at the top wasn’t a total bust.

Ho’okipa Beach from above

There were probably 20 turtles hanging out on the beach (in their VIP, roped off area so they could sun bathe.) We saw so many sea turtles playing in the waves right in front of us while the kids played in the water. It was truly a sight to see.

We had a variety of fantastic food while we were in Maui. We ate at Zippy’s. They are famous for their chili. I tried Spam there! (I’m a notoriously picky eater but while in Rome…er, Maui.) I also took the risk of an incredibly painful stomach ache and ate their Banana Cream Pie but I won that battle. We went to The Cinnamon Roll Place and I had a GF bun. We got the kids Hawaiian Shaved Ice from Beach Street. We ate Guri-Guri which is like an ice cream and snow cone meets gelato and apparently only available in Maui and nowhere else in the world. I had a Mai Tai anywhere that served them which was anywhere with an alcohol license. I unsuccessfully searched for a place to serve me a cocktail in a pineapple but no luck. Next time LOL

Paradise Found Indeed
Maui Sunset

We got home and I slept for 15 hours. Be a friend and don’t ask me to do anything for the next month because I am so mentally and physically exhausted from too much fun and my body will need weeks to reset because it’s always give and take when it comes to MS.

There is always a cost, but trust me and go to Maui! It’ll be worth the recovery time.

Let me know if you find a place to drink out of a pineapple.

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May 30- World MS Day

World MS Day is celebrated on May 30th every year. (It’s different than MS Awareness week/month in March. I think that is maybe celebrated (is that the right word? Are we really celebrating? haha) in the U.S.

Anyway, wear orange. It’s the official color of Multiple Sclerosis.

Can I tell you a silly story? I went to D.C. with the National MS Society earlier in May to learn about advocating with lawmakers. I went to like 6 stores trying to find business casual clothes in Orange before my trip. I couldn’t find anything! So I packed the 3 orangeish shirts I already had and went to D.C. It was fine. I was orange enough. I am at Kohls the week after I get back to return something, and there is ORANGE COLORED clothes all over the dang store. I started angry crying in the store and I text my friend because I was so irrationally mad about it. In true friend fashion she laughed at me before saying something helpful.

Sarah in an elevator. Sarah is taking an ELEVATOR SELFIE taken as a requirement by Sarah if you are ever in an elevator with a mirror.

My emotions sometimes swing all over the place as a side effect of my MS. I have PBA (Pseudobulbar Affect). It’s where you laugh or cry at inappropriate times. I cry at everything! It can get ridiculous. I used to take a pill for it but then I started feeling like I didn’t have any emotion, so just know, I might burst into tears and it’s not your fault. Then when you ask what’s the matter, I’ll probably start laugh-crying. It still won’t be your fault, and hopefully you’ll be laughing by then too.

Are you going to celebrate today?

https://worldmsday.org/about

Copied directly from the World MS Day website (link above): The theme for World MS Day 2020-2023 is ‘connections’. The MS Connections campaign is all about building community connection, self-connection and connections to quality care.

The campaign tagline is ‘I Connect, We Connect’ and the campaign hashtag is #MSConnections. MS Connections challenges social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better services, celebrate support networks and champion self-care.

MS Connections is a flexible, wide-ranging theme. Whether you’re individual or an organization, you can choose to focus on a variety of angles when celebrating World MS Day, including:

  • Challenging social barriers and stigma that can leave people affected by MS feeling lonely and isolated
  • Building communities that support and nurture people affected by MS
  • Promoting self-care and healthy living with MS
  • Lobbying decision makers for better services and effective treatment for people with MS
  • Connecting people affected by MS to MS research.

I agree that Multiple Sclerosis can be very lonely at times (especially in the first few years where it felt like the world didn’t understand what I was going through.) July will be my 10th year diaversary of being diagnosed with MS. I think it’s important to find people that you can interact with to ask questions and share your stories. That can be your family and friends in real life. There are so many great people that you can follow on Instagram and Twitter. You can search the hashtags #WorldMSDay , #ThisIsMS , #MS Moms , #MSConnections etc to find accounts you may want to follow. Some profiles are very MS specific and data driven like info on new medications in the pipeline or new clinical trials you might be eligible for. Other profiles are more personal- my profile shares things that help me as a person living with MS. You can follow me at msfitmomma on IG, FB and twitter. Just like a pair of high heels, you might need to try a few before you find the right fit for what you are looking for. I miss high heels…

Don’t forget to eat a cupcake today to celebrate the fantastic MSfit you are!

They gave us a day….absolutely use that to your advantage today. Eat two cupcakes, why not?!

Some Sunny Sunflower Cupcakes I Made
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MSfit Travel Log- Packing Edition

At almost 40, I traveled all by myself, for the first time ever, in my life. I love to travel! I just usually travel with family or friends.

I was invited by the National MS Society to attend their Newly Engage MS Activist Workshop, in person, and in Washington D.C.! (Separate post on that later!)

I have been to D.C. once before but it was a very long time ago, and I don’t remember much. I vaguely remember going to the Lincoln Memorial, I think, but that’s about it.

Since I would be traveling alone, I wanted to pack everything into a carry on so that I wouldn’t need to deal with waiting for my luggage to be offloaded from the plane. This presented a few challenges: SPACE and WEIGHT. I needed to be able to lift it up and down from the overhead compartment. I needed to be able to roll it AND roll my walker through crowds of people at the airport. And most importantly, I needed to pack all my MSfit gear plus clothes /toiletries/everything else into a carry on. I was going for about 4 days so I had to carefully plan.

After 10 years of living with MS, I have learned that it is better to be prepared with items you might need than to be without them. I get very overheated, very quickly. I can’t always tell it is happening until it’s too late. Often that means ending up lightheaded and struggling to walk. I have to take this into consideration when packing because I wouldn’t have anyone with me to help me out if something were to happen. What I struggled most with packing was WHAT MS GEAR did it make sense to pack just in case? I carefully selected a few essentials I decided needed to come along with me.

My Carry On packed to the brim…

I know D.C. has a tendency to get humid so I packed the cooling vest that I wear in humidity. It is basically a bigger version of those tubes you can get wet and wear around your neck. This is the same idea that you can get them wet, they swell up and then retain their moisture to help cool you off.

My Cooling Vest: not cute but it helps cool you off

Next, I packed my Blackout Umbrella.

MS Pro Tip: GET YOURSELF OR THE MSFIT YOU LOVE A BLACKOUT UMBREALLA!!

Mine folds up very small so I wasn’t worried about it taking up too much space. Blackout Umbrella’s are spectacular! They help block the sun and literally, when you use it, it is a few degrees cooler under the umbrella. In Southern California heat, I will take those precious lower degrees however I can. It is small enough I leave it in my car year round so I have it no matter what. I have used it while swimming, walking into a store, waiting in line to pick up my kids. It is a lifesaver!

My cutie Blackout Umbrella that I love!

I also packed my cane. It folds up. I don’t always require a walking aid. Sometimes a walker is too bulky. Sometimes a cane isn’t enough. Again, better to have it and not use it than wish you did. (I didn’t. I used my walker for anywhere farther than the Presidential Ballroom where the workshop was held.)

My Hurry Cane

It can be intimidating to be a woman who moves slow in this world so while it might seem a bit extreme, I decided to purchase a Travel Door Jam. It gave me extra peace to know I was adding another layer of protection while I was traveling by myself. You can find travel door jams on Amazon for about $9. It was easy to install on my hotel door. When I tested it, my door didn’t move at all.

Travel Door Jam

Lastly, I saw on Tic Toc that you can wrap your shoes in shower caps so the icky bottom of your shoes don’t get on your nice clean clothes. I tried it and it worked great!

Dollar Tree has 8 shower caps for $1.25

The airline forgot to move my walker onto the plane from my second flight so when I landed at home, I realized my walker got to hangout an extra day in Phoenix. It was no big deal. They were apologetic and handled it quickly to get it back to me.

Has that ever happened to you? It was a first for me. Do you have any travel tips for traveling with essentials? Is there anything you back NO MATTER WHAT?

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It’s Fundraising Time! 3 Simple Fundraisers to Try If You’re a Newbie!

If you know me, you know that I love participating in Walk MS every year. It’s a walk outside of our local AAA ball park to raise money for the National MS Society for people living with Multiple Sclerosis. The funding helps patients receive financial help they might need for medicine or maybe, a new Air Conditioner for their house. The National MS Society is also the largest private funder for MS Research. They want to find a cure. (Full Disclosure: I do a lot of work with the National MS Society. They are not paying me anything. This is just my opinion of the work they do for people living with MS.)

The first time I signed up for Walk MS was the year I was diagnosed with MS. 10 years ago, in the welcome email I received after registering, it said that the average first time walker raised $300. I decided that was going to be my goal. It wasn’t small but it wasn’t overwhelming either. It seemed do-able. I asked my friends and family if they would support me and started gathering donations. That first Walk, we raised $1,200. I was blown away. After we participated at the actual Walk and I was able to experience all the energy, I knew I wanted to aim higher for the next year. I had caught the fundraising bug but where do I start?

Sarah at a Walk MS event

I get really excited to fundraise every year. It’s my passion project every January to April to fundraise. I put so much time and effort into fundraising. The last eight years, I have held a raffle to raise money for my Walk.

We had to switch to a virtual raffle the last few years do to Covid

I hold the raffle at a pizza restaurant that donates a portion of that nights sales back to our fundraiser. I ask local businesses if they would like to donate an item or a gift card that we can raffle off, in return I will advertise their business on FB and IG leading up to the raffle. I also post their business information during our raffle and at the actual Walk. Leading up to the night of the raffle, I sell raffle tickets and collect monetary donations. Usually by the end of the night of the raffle, we have raised $1,500 to $2,000 for our team donation.

Always thank your sponsors and supporters

I’ve gotten better at organizing my raffle as the years have gone on. My raffle takes a lot of dedication, time and energy to pull off, so if a large raffle sounds to overwhelming, if you’re new to fundraising or not sure how to start, here are 3 simple ideas you might like to try to started.

#1- Ask 10 People if they will donate $5. When you hit that goal, ask 10 other people if they will donate $10. Then ask 10 people if they will donate $20. etc. I like to make a little game out of it to stay motivated but you don’t have to do it like this. You just need to start ASKING.

Call, Text, DM, etc. “Hi Bob! I am trying to raise money for my XYZ Walk. It is near and dear to my heart because _______. Would you be willing to donate $5 to my fundraising goal?”

This is the easiest thing to do but people often feel like its the hardest because it requires ASKING. I have found most people want to help you reach your goal and they will give you a donation if you ask. Any dollar is a dollar closer to your goal.

#2- “Donate from every State!”

Ask one person you know from every state to donate $10 to your fundraising goal, when you check every state off that gives you $500 for your cause! And hey, if more than one person from a state wants to donate to you let them. It just increases your total donation. Also, if you don’t know a person in every state, it gives you a chance to share your fundraiser over and over.

You could to word it something like this, “Hey everyone! As you have probably seen and heard, I am trying to raise money for my XYZ Walk! I love this charity because _______! I have been challenged to gather a donation from every state! I’m doing pretty good! So far I have gotten 32 states crossed off but I need your help! Can you please share this post if you happen to know anyone living in South Dakota, Rhode Island or Alaska? I don’t know anyone there. I appreciate your help!”

#3- “Can You Spare Some Change For XYZ?”

Upcycle that spaghetti sauce jar or an empty soda bottle that you’re ready to toss in the recycling. Or, you could pick some glass bottles up from the Dollar store. Put a label on it that says, “Can You Spare Some Change For XYZ?” Then ask a few people you know with offices or local businesses if you can leave the jar in their reception area for a month to collect change as part of your fundraising. After a month, (buy some coin wrappers while you’re at the Dollar store), sort the coins by denomination and start filling those wrappers up with all the accumulated loose change. You’d be surprised how much change fits in an empty soda bottle.

An orange and blue wreath Sarah made with a sign that says: In this family no one fights alone. Multiple Sclerosis Awareness

Bonus Tip: NEVER underestimate the power of a handwritten thank you note! (At the very least, a Word Doc that you personalize with the name of the person or business and sign your name in ink at the bottom!)

I love checking the mail! Yes, even now as a grown adult. When there is something in there other than bills and Ad’s, a big grin beams on my face. I’m not exaggerating. I get so excited! What it is?? An invite to a party? Announcement of some kind? Who knows until you tear that envelope open and find out!!

I’m linking my Walk MS fundraiser link below if you want to get an idea of what I say to ask for donations.

https://mssociety.donordrive.com/index.cfm?fuseaction=donordrive.participant&participantID=73886

Have you ever done any fundraising? What has worked for you?

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Covid Exhaustion

Back when my world shut down on March 12, 2020 we decided to pull our kids out of school to help keep me safe because my neurologist told me not to leave my house and not to interact with other people because if I caught Covid, he was certain it would be a very hard battle for me to win. To stay safe, I had to go on lock down and not leave my house.

We had a family meeting with our kids to discuss what these next “two months” would be like. (Remember the days when we all thought this would be over quickly?) My kids know I have Multiple Sclerosis and know I take medicine that messes up my immune system to fight my MS. They know this because even though they hate shots, we get our flu shots every year. They know they do this to help me. My niece and nephew also know they get flu shots because it helps keep me safe. My whole family got vaccinated the second they could. My kids know that I take medicine every day to help stop my MS from progressing. These pills I take in the morning and at bedtime are to help control my high blood pressure and to make sure I don’t pee my pants because I can’t always regulate my bladder any more. I never had these issues before MS. I currently take 11 pills a day to treat 5 different medical issues that I have acquired after I was diagnosed with MS ten years ago.

As school approached in August 2021, we had to decide if we were going to keep our kids online learning or go back in class, we discussed it for days. When we told the kids that they would both go back to school in person, (My daughter especially had a really hard time being away from her friends)they were thrilled. Then came the long list of things we needed them to do because our families situation is not necessarily the same as their friends families situations.

They were both still unvaccinated, so we told them they would have to wear masks all day even if their friends didn’t and even if school said they didn’t need to. We told them that they would need to use hand sanitizer every time they were near other kids. I even requested that they have clear plastic dividers put on their desks. After the first day of school, they both reported that they were the only ones in their classes that had them. I always reminded them that our situation is unique and that we were all doing things we needed to to stay safe. I would remind them that if we got Covid, it could end bad. After a few weeks, they would be exasperated with me, “Mommmm, we know!” I kept reminding them though because my anxiety about catching Covid is always on high alert.

Last Friday, I received a call from our districts Covid Response Team to be advised that someone who was in close contact with my daughter had tested positive. I was so shocked, I told the lady I needed to call her back because I couldn’t process what she was telling me. When I called her back she told me I had the option of having her quarantine for 10 days and send her back with a negative test or because she is fully vaccinated, she could go to school on Monday and if she started have symptoms, that I keep her home and let them know. I was surprised that these were my options.

When my daughter got in the car Friday afternoon, she told me that she had to tell me something and I might be upset. I responded that I already knew the news. There was a look of relief in her eyes, but a split-second later she was crying, asking what if she got it from her friend and what if her friend dies or if I died or if she died? That it was all her fault for being too close to her friends at lunch and recess but that she always has her mask on, except while eating. She also said, she hasn’t been as good about using hand sanitizer as I want her to be because sometimes she just forgets but other times they get back in class and start working on stuff right away and she was so sorry she should have been better about using it.

So much of her thoughts bubbled out of her mouth in those first few seconds in the car. I told her it was ok and I wasn’t mad at her. I told her that on Tuesdays, I see her on the field with her friends while they are at recess before they are dismissed a few minutes later. I see that she is one of the few kids outside that still has her mask on even when most of the kids have pulled them down around their chins because they are allowed to do that outside. I tried to stress how much I see and value that she takes so many steps to try to keep me and others safe.

I didn’t realize until that moment how stressful it has been for her. She is so responsible and such an old soul that sometimes I forget she’s a kid. She has been enduring as much pressure as adults have and in some ways, even more because of her mom. That’s a lot for a 12 year old to handle.

I know I’m exhausted from everything Covid related. I’ve spent the last two years trying to dodge this invisible virus and trying to stay ahead of it. I’m tired of following the news to find out about the latest variant or where it’s spiking. I’m tired of hoping that strangers in the grocery store are taking precautions when we’re standing in the same aisle. I am annoyed that the CDC on Friday basically said that the people who are dying from it either aren’t vaccinated or have comorbidities, like we’re an acceptable group of people to sacrifice.

People are still dying daily. We are approaching a million people dead and gone from Covid. I don’t want to be one. I definitely don’t want to be one if you refuse to get vaccinated. I’ve had 3 shots but I am still immunocompromised.

On Monday, a letter was sent home from my son’s school (my kids attend 2 different schools in our district.) It was alerting me that someone on his campus has tested positive but he has not been near the person.

We’re all burnt out but it doesn’t look like Covid will be going away any time soon. If you refuse to get vaccinated, that’s your right, but don’t come to the hospital when you feel like you’re dying because someone who has taken it seriously for the last 2 years might need that bed after contracting Covid from someone who thought it wasn’t that big of a deal.

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If Its (Gluten) Free, Its For Me

Hey MSfit’s, Spoonies and Party People? How ya been?

My life has been jampacked lately. It was just Halloween and now Christmas is in 3 weeks?! Does anybody else feel like 2021 just flew by, considering that we basically lost all of 2020, and now we’re just supposed to jump in to 2022 and conquer it? I’m not ready. I need more time.

Festive Sarah

I have know for 20ish years that I have an allergy to wheat and yeast. I tried going gluten free for like, 3 days in 2001. Back then your GF options were super limited, super expensive and everything tasted like sand paper. I am a picky eater on a good day and trying to find GF foods that were edible then was just overwhelming so I quit very quickly.

I’ve had this incredible (in the worst way) abdomen pain that we have been trying to figure out for almost a year now. We tried a few different medications to reign it in. I got my first colonoscopy and endoscopy (I am still traumatized from the colonoscopy prep but the colonoscopy itself was easy, peasy.) They were able to rule out a tumor and colitis from the results of that. But since I still get the pain, I have a GI MRI of my abdomen scheduled for two weeks. Even though I’ve had numerous Brain and Spine MRI’s, I don’t think I’ve ever had an MRI anywhere else, so I’m interested to see how they compare. Will it take long enough to get a nap in?

Prior to my colonoscopy, I had started cutting gluten just to see if it made the abdomen pain go away. It significantly cut it down, but I do still get it a few times a month. I hate to admit it because everyone always says to cut gluten if you have MS, (because everyone has some secret insider info that has worked for someone they know who also has MS,) but I must confess, my body does feel different not eating gluten. I can’t say how exactly but I feel it physically.

Now that I’ve gotten good at cutting out gluten, if I cheat, I make myself really violently ill. Like I did on Thanksgiving night, in a hotel room in Arizona, after eating the tiniest portion of pasta salad and a piece of pecan pie because it was Thanksgiving. As I was lying on the bathroom floor, I just kept telling myself, it’s not worth it. Nothing tastes so good that its worth throwing up for an hour. I am currently training my kids to tell me that anything delicious that I can no longer eat, tastes like kale or bacon, because in my world those are really gross. Please don’t come at me for bacon…more for you to enjoy!

I’d say bacon flavored bread but people would probably love that so…”kale” flavored bread

I am in the phase now of trying to find GF foods I like. I have a really hard time with the textures of some of them. Right now, I am buying brands of gluten free items and just seeing if I like it or not. I’m trying not to overwhelm myself- it’s a marathon, not a sprint. I want to stick with it this time (which I really think I will after Thanksgiving) I am not ready to start trying to bake GF or make items from scratch. This seems like a good pace to buy items I would like to try, and have them on hand for when I want to make something specific, like say, mac and cheese with GF noodles, or if I feel like whipping up a GF pie crust.

These taste exactly like regular Oreos

Have you had to make the switch to Gluten Free? Any tips? Any amazing GF people to follow on IG? Any websites that have truly delicious recipes to try when I make it to that stage in my GF journey?

Please be kind and remind me that that delectable cheesecake you’re eating tastes like kale.

“Kale” flavored pizza!

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The Girl at the Rock Show

Friday night, I went with my cousin, sister and brother in law to go see Alkaline Trio and Bad Religion in Riverside, California. My cousin and I fell in love with Alkaline Trio 20ish years ago while still in high school. We were super stoked to go see them. It was ready for a night out and a reason to do my makeup and flat iron my hair. (Also if you’re a music buff, you know the title, The Girl at the Rock Show, is actually Blink 182 lyrics, and not either of the bands that I was there to see.)
Waiting outside the restaurant

We decided to go eat before the show. My sister got to the restaurant a few minutes before our cousin and me. She put her name on the waitlist. Once we got there we hung out outside talking while we waited for her name to be called. After about 30 minutes it was and we headed inside. It was a narrow walkway so they were in front of me walking. We got to the hostess section and a guy in line let my sister step past him but as I got closer, he started to inch forward so I couldn’t pass, so I inched forward. He wouldn’t make eye contact with me. After a few seconds of our game of chicken, I said, “Can I get through? My table is ready.” He acted all surprised that he was in my way, took a step back and mumbled something as I rolled by. (I think he thought I was trying to cut in line to put my name in at the hostess section. But maybe he was just a jerk.)

We sat down to eat. The girl that took us to our table offered to move my walker out of the way but the way the table was set up, it was easy to put it halfway under the table and keep it out of other peoples way. I told her I appreciated her asking but I would just leave it here. We ate, laughed and chatted before deciding to head to the venue (which was literally across the street from restaurant.)

My Ginormous Cobb Salad

Its always nerve-wracking to go to a new venue/restaurant/hotel etc. It can be hard to tell how they accommodate someone with walking aids. Yes, most businesses are required to be ADA accessible but it doesn’t mean that they are like that in person. We headed to check in where they were checking IDs and Proof of Vaccination cards. As we approached, it was clear there was a set of beautiful stairs looming in front of me. My sister and BIL got pulled into one check-in lane and we got pulled to another. We asked the guy who was making sure we were old enough to drink, where we go so I could get in without lugging my walker up the stairs. He stammered, he wasn’t sure. Thankfully, another security guard saw us and pulled us out of that line and told us to follow him to the elevators. He took us up to the second level where we got screened by a security guard standing outside the elevator doors. He said we were his first guests of the evening. He checked our tickets, waved the metal wand over us and told us to have a great night.

We headed into the auditorium. The tickets were “standing room only” so even if I had gotten a place to stand against a wall there would be no way that I could have stood 3 plus hours there without my walker. Luckily, there was a small wall that divided the room for about 8 rows of seats for people who had paid to sit, only to have 100s of people standing in front of them blocking the view of the stage. I parked myself there in front of 2 empty seats behind me so I wouldn’t be blocking anyone. (But soon 2 people did sit behind me.)

I found myself “Princess Parking” inside

The show was phenomenal! Alkaline Trio was up first. The floor in front of us was pretty packed but people were really good about stepping around me as they walked by. I danced from my seat and sang along to my favorite songs. At one point a guy didn’t see me but his friend did. He was about to walk into me when his friend pulled him out the way while telling him he needed to watch where he was walking. They both shouted sorry and passed by.

Listen to Another Innocent Girl

When Bad Religion came on stage, the floor became super jam packed. I took this moment to go find a bathroom hoping it wouldn’t be too crowded. I rolled out to the lobby and the same guy who took us to the elevator said the only bathrooms were downstairs but he would take me there. He took me back to the elevator and showed me where the restrooms were. He said he would wait for me. I told him it was ok and he could leave but when I came back out, he was still there. When we were going back up to the main floor, I asked his name because I want to let the venue you know I appreciated his customer service. (I have had so much shitty ADA service at places that if someone or some company treats me great <not even above and beyond but just like, cool and helpful>, I want people in charge to to know about it.

Apparently, while I was in the bathroom, even more people had came in to watch the show. The audience was going nuts singing along. People were jumping, screaming and having a great time. A girl dancing in front of us kept dancing backwards towards us. At one point she was inches away from crashing into me. My cousin tapped her and then pointed to me. The girl made a face but moved forward. It got more and more crowded, and more and more people kept walking into me or almost crashing into me. My cousin kept trying to shoo people away from me. It finally slowed when my sister and BIL stood sort of in front / side of me, to block me.

Listen to Los Angeles is Burning

My cousin and I left at the encore of Bad Religion to try to get ahead of the massive rush to the cars. (Cuz trying to out roll a crowd, is a big nope from me)

It felt really great to be out. I got home right before midnight. Even with all the people blatantly ignoring me sitting there or just being oblivious to my walker status, it was still one of the best nights I have had in a very long time.

It’s always a good time for rum
It was a full house
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It’s Been Non-Stop Since January

I feel like I have been going nonstop since January. Girl Scout cookies started. Then it went online only due to Covid protocols. Then they added a month longer to sell. Cookies will close this weekend; which will be a headache and a relief all at once.

I start fundraising for Walk MS in January every year. I am always an elite team (because I like the perks and raising money to find a cure for MS.) I hold a raffle every year. I coordinate it and set it up. This year it was really hard to get donations from corporations but my friends and family stepped up and gave me over 25 beautiful items to raffle. We raised over $8400. It was even more special because this was our 8th year Walking and I decided I wanted to raise over $8,000 as my team goal. Last Saturday, we socially distance walked with family and friends at a local park. It was really fun and thankfully not too hot. I LOVE WalkMS! It’s my passion project from January to April but like everything else, I am relived Walk is done for the year.

WalkMS21

Yesterday, we had training for California State Action Day with the National MS Society. State Action Day is a day where we talk to our local legislators and ask them to support priorities for people living with MS. This year we are working on getting AB 32 Ensuring Telehealth Access is Implemented Beyond the COVID-19 Pandemic and AB 347 Reform Step Therapy Protocols.

CA State Action Day 2021

On yesterday’s training, I shared my story of how having access to telehealth during the pandemic was vital to my physical and mental health. I strongly believe telehealth needs to be left in place as a healthcare option after the pandemic ends. There is a lot of momentum from patients and doctors to keep telehealth in place. We are also working to get support to Reform Step Therapy. Step Therapy is when an insurance will make you take the cheapest medication or therapy and you have to fail (have disease progression) before they will move you to the next medication and the next better medication. I firmly believe if my private insurance had put me on the aggressive therapy the neurologist requested for me when I was first diagnosed in 2012, that my MS wouldn’t have progressed as fast as it did. Monday we advocate for change!

It’s been a lot. I am ready for a break. It keeps popping in my head that my kids will be out of school in a few weeks for summer break. I still feel like time, just sort of rolls together with no breaks since lockdown started last year. It doesn’t help that I cut caffeine from my diet either. I feel good until like 11 in the morning and then I just start slowing down. LOL

I hope you’re remembering to take breaks, cut yourself slack and ask for help if needed. I am not good at any of those things but I have been trying to make MYSELF more of a priority; maybe now that I will have some more free time, I can amp that up…

Sarah in front of a blue door with a blue and orange wreath that says, “In this family no one fights alone.”
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1 Year Later

A year ago today, the Hubs and I decided we wanted to be “overly cautious” in case this Covid thing was more serious than everyone thought. We decided to pull our kids out of school a year ago. The next day schools closed anyway. A week later the Hubs was laid off. We never ran out of toilet paper because my mom, sister and I had went to Costco in early February and stocked up on household goods then. We figured if it turned out to be nothing, we would have 4 months worth of stuff.

ID: A black facebook post that says: 1 yea ago: I’ve decided to socially isolate for now do to Coronavirus. I have a very compromised immune system and yeah, maybe it doesn’t effect you or you have good odds of fighting it off but I literally have No B cells in my body to do so.

In a lot of ways, lockdown has just felt like how I normally do life anyway. (Except for doctor appointments moving online, and I vote with keep and increase access to Telehealth!)

I stay home, especially during flu season, since I have a compromised immune system. I stay inside when it’s too warm. I try to find things to keep me entertained inside…crafts, tracing my ancestry, baking, etc. I try to keep my stress levels low (which was kind of hard to do during a global pandemic…)

We tried to make the most of this family time together. I had always wanted to watch all the Marvel movies in order, so we did. Then my son said he wanted to watch all the Star Wars movies in order, so we did. My daughter and the Hubs re-watched all of Stranger Things episodes in one weekend. I never got around to watching Tiger King. It’s still in my suggestions on Netflix.

It wasn’t all easy. I am an extrovert. I crave interaction with people. The first 3 months of lockdown was fine, maybe even fun. The hubs taught me to play darts, we had numerous backyard bonfires and looking at the stars (It’s normally to cloudy/smoggy to see from our house but the sky was really clear when everyone was staying home.) My kids learned to code and animate and they are both really good at it.


The farther we got into Lockdown, the more depressed I got. I did not want to go for drives as there was no destination to explore at the end because we couldn’t explore with a virus looming. I didn’t want to be out around people because I was trying to stay away from a virus I couldn’t see. We did go to the beach twice. Both times we arrived at 8 am and once people also started coming, we left. My anxiety would start racing, my heart pounding. I know my family would have wanted to stay longer but they understood when I would say it was time to go.

ID: A blue grey picture of Sarah at the beach sitting in a chair. Palm trees are behind her. She has an orange hat and a orange mask

When school started up in August for my kids, I was really grateful for the structure and routine. Online school has been better and difficult for my kids in different ways.

Since California is moving into the red tier of infections, schools are figuring out how to be hybrid of online and in person classes. After lots of discussion, the Hubs and I decided we will send the kids back to school in person in April. It will only be twice a week for a few hours each day. This was not an easy decision. My family lost someone very important to us to Covid. Someone else I love very much caught it and almost died. The paramedics came and agreed that he was in very bad shape but said there were no beds available at any hospitals to take him too. Eventually, he pulled through a few days later. To send my most precious babies back before they have been vaccinated or our being vaccinated is scary but their mental health has to be the priority now.

I just want to remind you to be kind to yourself.

In this past year, if you didn’t get a novel written, if you didn’t learn to make sourdough, if you didn’t watch all episodes of Friends, if you didn’t wear pants to every Zoom meeting you had, if you killed a houseplant, if you ordered more ice cream for porch delivery than you want to admit, if you didn’t shower daily, however YOU made it through this year, you did it and you did it just fine.

Stay safe and Love on Other People.

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Things I Find Helpful {MS Perks/Spoonie Swag Edition}

Hello MSFit’s and Spoonies! Today, I am going to share with you some programs that you might be eligible for because you are disabled. I am uncomfortable with the word “disabled” being attached to my persona because I am so much more than the fact that I have to live with Multiple Sclerosis.

I hate when people praise me for doing something that if I didn’t have MS, you wouldn’t be clapping for me doing. “OMG, she washed dishes! Look at her go take a walk around the block!” Actually, you would never catch me doing this in real life, even if I wasn’t rawkin the walker.

So since, I have this ball and chain to drag around with me, one day about 8 years ago (I’ve been diagnosed for roughly eight and a half years) I went looking for prizes! Some of these may be state specific but maybe, they will give you starting points of where to look to see if you can qualify for these perks and discounts too. Most of these discounts are not advertised. You can just call your cable provider and ask if they have a discount for if you have a disability. When I called our cell phone provider, they did have a discount for disability but they had a better discount, because my Hubs is a veteran so we went with that discount.

DISCLAIMER: I make no promises that these are still active by the time you read this post but I did verify all of these still being active as of February 2021 before I posted this. As with everything Covid related processing times may take longer to process, I’d assume. Also I am not very computer savvy so I didn’t include links because I don’t know how but I have given enough information on all of these that if you Google, you should be able to find them.

Utilities: If you live in California, you may qualify for a Medical Baseline discount with your energy providers if you have a family member living full time at your residence if you use certain medical equipment, are temperature sensitive, have a life threating illness or have a compromised immune system. Southern California Edison and SoCalGas will give you more kilowatt hours at a lower price. You will need a doctor to certify your medical condition. Eligibility is based on medical condition not income. You will need to recertify every two years or so. You should check with your local utilities to see if they have any similar programs.

Amazon Prime: If you have a Government Assistance card like, SNAP, WIC, TANF or Medicaid you can get a 50% off discount on your Amazon Prime membership. It comes out to $5.99/month. You get 2 day shipping on purchases. You can stream Amazon Prime shows. One benefit I really love is that they give you unlimited free photo storage. I don’t know if you’re like me but I take so many pictures on my phone and run out of storage pretty quickly. Since I signed up for the unlimited photo storage, they save them to the Amazon Photo app and I can erase them from my phone to free up space. When I need them, I can just open the app and pull them off to share or print.

California National Parks Pass: For persons with permanent disabilities you can purchase a 5 year pass for $3.50. You need to requalify and pay the fee again every 5 years. This pass entitles the bearer to a 50% discount for vehicle day use, family camping, and boat use fees at California State Park operated units.  They also have other discount programs that are based on eligibility. It’s definitely worth a look if you camp or fish.

Image: 2 National Park passes on a wooden background

America the Beautiful National Parks Access Pass: Similar to the California parks pass, you can apply for a National Park Access Pass for free to visit national parks. If you process your application online, there is a $10 fee. You can purchase the free pass in person at some national park locations. To qualify you must be a U.S. citizen or permanent resident with permanent disabilities. Applicants must provide documentation of permanent disability and residency or citizenship. This pass covers entrance fees or a personal vehicle fee areas (or up to four adults at sites that charge per person). Children age 15 or under are admitted free.

This pass is good at over 2,000 recreational parks. We have used it a few times in the past. A few years back we went to Yosemite. We spent 7 hours driving around the park. It was so beautiful. We have also used the pass in San Diego. When life goes back to normal we are planning to go to Zion Park in Utah because we only live about 6 hours away from there.

MSAA Cooling Program: I am very heat intolerant living with MS. I know for others they are cold sensitive. The MSAA (Multiple Sclerosis Association of America) has a cooling program where you can apply and they will send you a cooling vest. It is a vest you can wear over your clothes. You put ice packs in the pockets and it will help cool your core down. It’s not the sexiest vest BUT it does work at cooling you down. You will need to qualify based on income and with a doctors note.

Image: Sarah holds an ice pack to the nap of her neck to cool off

Medical Copay Assistance: Living with Multiple Sclerosis can be very expensive. Most of the major Multiple Sclerosis DMDs (Disease Modifying Drugs) have programs that can help you with your insurance copays to help cover the cost of them. You will need to check with your medicine manufacture to see how you might qualify. I am currently on Kesimpta and they automatically enrolled me in their program for the discount.

Standing in Lines: I know this sounds silly…If you go to a theme park, you can ask where you can go pick up a Disabled Access pass. After obtaining the pass, you (or your companion) go up to the person standing at the front of the line entrance and they will give you a specific time to come back to get on the ride. It does not get you on the ride right away. If the wait is 45 minutes they normally tell you to come back in 45 minutes but then you can go sit in the shade until it’s your ride time. There is no way I can roll all over an amusement park and stand in lines. My leg would be toast immediately.

Traveling as a Disabled Person: If you are medically disabled, you can get early access to airplanes (and I have been told cruise ships) so you’re not trying to get to your seat in a single file line of rushed people in an 18″ wide aisle. When you book your travel tickets, let them know in the special need section that you need disabled access. The gate agent will usually call your name about 5 to 10 minutes before loading the plane or the cruise ship. Also, anytime we travel by plane, I call the customer service number and have them assign us 2 or 4 seats together. If my Hubs and I are traveling alone he is my caretaker. He hands off my walker to the loading person and deals with the luggage. We have 2 kids (one with a disability) so if the 4 of us are traveling together, they group our seats together so we are sitting next to our children. In my experience, if I ask them to waive the assigned seating fee, they always have. I almost always have had to ask for the fee to be waived but I just mention that because it is an American with Disability issue, it’s covered under the ADA act to not pay more for reasonable accommodations.

Image: A walker with a foot in a leopard print shoe on a wooden floor

Princess (or Prince) Parking Pass: If the Department of Motor Vehicles says you qualify for needing a Handicapped placard, people, you park in that designated spot! Remember two things: 1) Not all disabilities are visible and 2) THE DMV DOESN’T JUST GIVE ANYONE THE HANDICAPPED PASS. I hate to say you earned it but by not using it, you are only making it harder on yourself. By having the placard, you get perks too: you don’t have to pay at street parking meters. You can use the green loading zone as a parking spot if you can’t find an available handicapped spot.

Do you have any Perks, Swag or Discounts you can share?

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Things I Find Helpful {Saving the Green Edition}

Disclaimer: I am not a financial guru. These are all just fun suggestions. Some, you could even find on Pinterest. That should exhibit how NOT A FINANCIAL person I am if I find fun tips on Pinterest.

So are you a SPENDER or a SAVER? It has been said that opposites attract and generally speaking, a spender gets with a saver and vice versa!

I am not a natural saver. (So you can guess which one I am in my relationship…)

I have to make it interesting and fun to save. As stated earlier, Pinterest has so many fun saving challenges all you need to do is punch in, “Save Money” in the search bar. One that I have liked doing for the last few years is the “Penny a Day for a Year” challenge. You are supposed to put one penny in a jar on Jan. 1st, two pennies on Jan. 2nd, three pennies on Jan. 3rd, etc. By the time, you get to December 31st on the last day when you put in the three dollars and sixty-five cents you should have saved $667.95!

Image of a handwritten note on lined paper. A pennies per day adds up over a year.

I am not a cash spender so it was hard the first year I attempted this to find pennies every day so instead I took a half hour, figured out how much pennies that equaled monthly, set up auto deposit and save money without even thinking about it! There is also a similar one that is a dollar per week for a month. I figured this one out as well but I haven’t set it up yet. If you do this one, you should have $1326 added up over the year. Here it is below if you wanna try it:

Image: Monthly Savings Plan of $1 per week

I also use apps that give me cash back when I shop online (and in store when we’re not living through a pandemic…) like Rakuten or Ibotta. It’s not a ton of money but it does add over time. In normal times, if I am going inside store to shop, I mainly use Ibotta for my grocery store shopping. For online shopping I use Rakuten. During Christmas shopping time, I would head there first to see if there were any discount codes in addition to any cash back rewards. I even use Rakuten for my Target drive up orders. Just be warned every time you go to the website/app, it gives you a specific shopping code for that “shopping trip” so if you close the window or app, you loose that specific code and your cash back doesn’t get counted. I just start a list so when I am ready, I can open the app, get my shopping code, add my purchases and get my cash back. (If you are interested in using either of these apps you can use my referral code so we both get a bonus! Ibotta:55onra Rakuten: SARAYR46

I just started listing our items we aren’t going to use anymore on Mercari. It’s a very user friendly selling app. You can list the price, when someone buys it, you pack it, print a label and ship it off. Once the buyer gets it and verifies its in good shape, you get paid. So easy! I really like this because people who come to my house during yard sales always low ball me. My stuff is in good condition; I am not selling it to you for a dollar. I love that on Mercari, you can control the pricing so you both get a fair deal: you make some money, they get a bargain. Here is my referral code for Mercari: https://merc.li/MtvApXb If you follow the link from your phone it will direct you how to download the app.

One last thing that I do to make savings fun is participate in medical surveys. My favorite one to use is Rare Patient Voice. You enter your conditions and they will send you surveys. They all vary and you won’t qualify for every one but the payouts are nice when you do. You can earn $5 just for signing up with them. I don’t have a referral link but I still suggest you sign up.

What things do you do to save money? Does saving come naturally to you?

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MRI’s in the time of Covid

I have practically been hiding in my house since March 12. 2020. I get mild anxiety if I have to leave the house, especially if there are a lot of other people out and about that might get close to me like at the beach or a grocery store. Saturday morning, I was sitting in the Drive Up area of the Target parking lot. I had pulled into the last opened spot. I had never seen the Drive Up area so full. The Target employees were moving pretty swiftly in and out of the store bringing out peoples orders. As we were sitting there waiting for them to bring out my order, I was watching hordes of people going in and out of the store. I didn’t see anyone not masked but just by the volume of people going in and out, I felt my chest get a little fluttery with panic. I am an extrovert. This has been one of the hardest seasons of my life to not have in person interaction going through lockdown plus bobbing and weaving to not be bit by an invisible monster.

I used to be super self-conscious when people would look at me on my walker. I would like to say in my years of living with MS, that I have gotten better about not noticing the stares. I’m not really sure if I have or haven’t but I have started wearing shirts that talk about Multiple Sclerosis so at least if they’re staring, I am spreading awareness about rawking an #InvisibleIllness.

Image: Sarah is wearing a orange shirt in her kitchen that says “Together we are Stronger. WalkMS 2020

I have had this appointment for my yearly MRI since December. Yesterday, I started to get really bad anxiety about going to the hospital. I had a really hard time falling asleep last night because I was so nervous. I had to do an anti-anxiety list to help ground myself. I knew I would be going double masked with a KN95 mask and another that is supposed to repel cooties. A friend dropped off latex gloves so I wouldn’t have to open doors without protection. In my mind, I was potently going to the monster’s lair since I would be at the hospital.

When I got to check in this morning, the room was jampacked full of people. I went to grab a number and rolled to an empty area. A customer service lady said I needed to go to the wheelchair/walker area that I hadn’t noticed. It just had looked like there were no seats over there to me which is why I had originally rolled to where I had. I get situated in my little space (and tried to remain as anxious free as possible in this fully packed intake room.) Then she asked the room if anyone had an appointment. Myself and another lady both said we did. She said come over here. I got up and started to roll to where she was. Then she told me to stay back so she could help the other lady first. No problem. I rolled back over to the walker area. I was almost there and then she called for me. I rolled back to her, got checked in and rolled to the other building to check into my MRI.

Image: Sarah is sitting in a lobby. Wearing a black sweatshirt with orange letters. She has on a floral mask and is holding up a peace sign with gloves on.

In this waiting room I was all by myself. The tech came and got me. I got situated and my MRI started. I only go yearly because 2 years ago, my MS had progressed into my spine. My neurologist feels like we already know it’s there and there is nothing to be done about it in my spine, so I only have to go for a 45 minute brain one now to see how it’s acting up in there.

I can’t even tell you what number MRI this was. I don’t mind having to do them. After awhile all those bangs, thumps, and zings become rhythmic and I can usually fall asleep during the MRI. On the other hand, my veins are not team players any more after years of blood draws and hospital stays. It’s often hard to find a good vein. If I know I am going to need to have an IV, I drink a ton of water the day before to try to plump them up. Today the tech was having a hard time finding one when it was time for the contrast. He started to say we can do a hand one and I begged him to please try again. I can handle so many things about being a person that sees a lot of doctors and hospitals but hand IV’s are my number 1 fear. To me they freaking hurt! The other tech who was watching my MRI came in and looked on my other arm too. They finally were able to do the contrast. I couldn’t see what they were doing in order to get it because I was still lying down with the headguard on. I know that my arm was bent at a weird angle with one holding it and pushing on my outer forearm while coaxing my vein and the other tech handing the other the needle and contrast stuff. My MRI was over about seven minutes later.

Image: Sarah is leaving her MRI with a black sweatshirt with orange and white letters. She has on a floral mask and her hands are gloved. There is a sign above her head giving a MRI safety notice

On the way out, I thanked them both so much for working so hard to find a vein for me. The tech said that the whole time of the MRI, I had been really still and when he said hand IV, my body visibly firmed up and they could tell, I was scared so they both really wanted to try to have me avoid the hand IV. I appreciated it and told him so. I am supposed to have my results in a few days. I meet with my neuro next Tuesday to go over the results and to come up with a game plan so I can get the vaccine.

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Things I Find Helpful {Kitchen Edition}

Let me just say before we dive into this: I DO NOT LIKE TO COOK.

Bake- yes. COOK- NO!

That being said, I love to buy kitchen gadgets and items that make my life easier for the times I DO cook. I love one pot meals or freezer dump meals that you can throw into your sauce pan, crockpot or Instant Pot. Yesterday we had pork roast going in the crockpot and the house smelled so good for hours leading up to dinner.

When me and the Hubs moved it together 16ish years ago I knew how to make a darn good grilled cheese sandwich. I could also microwave like nobody’s business. In the years since, my cooking has improved greatly but it’s still not something I really enjoy doing. It’s more like, we need to eat dinner so I cook something. I’ve gotten spoiled since March that the Hubs cooks dinner 95% of the time these days. I don’t know if you are like me but the later it gets in the day, the more my fatigue sets in and the more I start questioning if we even really need to eat anything at all. Cereal counts as Breakfast for Dinner, right?

No one is paying me for these suggestions, I just find they really make cooking (I literally typed cookies first..) easier or kick meals up a notch.

My first suggestion would be to invest in an Air Fryer! I hosted a Pampered Chef party during the summer just so I could buy their Air Fryer at a discount. We literally use this every day in our house. It amps up the flavor on freezer foods. Take for example, chicken nuggets! It makes them crunchy or reheating pizza to crispiness, instead of reheating it in the microwave to semi-soggy glory. The Hubs uses it for chicken wings. The instructions say you can roast a chicken in there or even bake cupcakes. It has so many uses we haven’t even tried yet like dehydrating meat for jerky! One of my favorite things about an Air Fryer is that it doesn’t heat up my tiny kitchen in the summertime, like turning on the big oven would.

Image: Our much loved Pampered Chef Air Fryer

Next, is kind of an oldy but a goody,– a toaster oven! This also doesn’t heat up small places. It melts cheese on tuna melts to golden, bubbly goodness! Toasting up buns for pulled pork or burgers, yes please! I use my Instant Pot for many things but my number 1 favorite use is to cook large batches of chicken all at once to be the base of freezer meals. I do this so I can pull a ready to go frozen meal from out of the freezer in the morning and have something quick and ready at dinner time. We have a large freezer that we keep extra frozen items or if there is a good deal on something, we stock up, and leave it in the big freezer.

There are a lot of gadgets that can spice up cooking. A panini press jazzes up sandwiches. The Hubs loves our mandolin to slice veggies. We just got a pineapple corer last week. I don’t have the hand strength to use it but he does and OMG, it’s so easy to enjoy pineapple now! I LOVE my Kitchen Aid mixer. During the holidays, I got brave and baked a from scratch pie crust and a NY style cheesecake. We also use our mixer to make homemade bread or pizza dough for our outdoor Ooni pizza oven. We eat fresh individual fire grilled pizza at least once a week now.

I know I just rattled off a bunch of items for you to look into but you know what else I find really helpful in the kitchen? It’s my NUMBER 1 tip!!

Sitting!

I used to be really self conscious of this need but with a leg that likes to tap out, I am only hurting myself, when I make my own life harder! I sit on my walker at the sink to wash dishes or I sit while I act as Sous Chef and help prep items for the Hubs. We have a squishy memory foam foot pad to help keep my feet comfy, when I do stand. We keep items I need to reach in our bottom cabinets/shelves so I don’t have to exert much energy to get to them.

Image: Kitchen gadgets at easy to reach levels.

#MSProTip: Bean and cheese burritos are fantastic any time of day! Add a bit of oil to a pan, warm it up and throw in a can of pinto beans (drain about 1/2 – 3/4 of the juice depending how runny you want them. I like 3/4 for drier refried beans and the Hubs likes 1/2 the juice for more liquidy refried beans.) Add a few shakes of garlic salt. Smash them up. If you want to be really fancy, sprinkle dry parsley flakes on top. It ups the Wow factor!

Do you have a killer quick dinner recipe? Any gadgets you can’t live without (because I obviously have an addiction to kitchen tools.) Any tips or tricks you’ve learned to make life easier in the kitchen?

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Things I Find Helpful {Household Edition}

Household Chores, blah. Dishes. Laundry. Sweeping. So many things to keep a household functioning. There are some chores that make sense for me to take care of and there are others that make sense for the Hubs to take care of. There are the tasks that are less of a bother for me to do and vice versa for him to handle. Or there are other duties we don’t mind taking care of at all and we just do them without being asked.

For example, you will never catch me mopping. It’s just not on my radar to take care of but he thinks of it and he just takes care of it. Pre-pandemic he never needed to worry if he would run out of his favorite soap and the kids didn’t need to worry if we had their favorite snacks on hand. We have been lucky to be home together during the pandemic and we have fallen into this rhythm where he cooks (which I absolutely HATE to do) and I clean it all up afterwards. Some projects we tackle together. #RomanceIsNotDead

The following products and ideas, I am not getting sponsored to share about; I just find they really help me with my household chores and I thought maybe they could help you too!

Laundry: Have you ever used Shout Color Catchers? In my house, it seems like we never have quite a full load of whites. But we do have light grey clothes and dirty towels that would make it a full load. You simply load your washer up with a batch of dirty clothes, drop a sheet in on top and start your washer! It catches all the random colored dye in the water and leaves your clothes the same color they started as. It’s life changing and energy saving!

Image of Shout Color Catchers

Dust: I am sure this is not a surprising product but, hello Swifter Dusters!! I love these things! I have the hand held size handle and the extender size handle. Added Bonus: My kids love to dust now! They run around the house dusting all sorts of places. I especially love the dusters for places that I would not be able to normally reach like ceiling fan blades…which leads me to my next topic…

Image: Sarah’s laundry tools basket with laundry items

Steps: I am five two. I can not reach many cabinets and shelves in my house. The Hubs is six, one. He doesn’t even need to stretch to grab things from up in the heavens. If I want to grab the foil off from on top of the fridge, I have to open the freezer door, to get closer to where it’s comfortably resting on top of the fridge, pull it down and shut the freezer door. Same routine to put it back. So for simple things like this, I have a tiny fold up step so I can use it to get things easier. I use it almost daily to make my life easier but there are still a few places in my house that I’m still not tall enough to reach. (Plus the Hubs and kids are afraid I might fall.) For those tough to reach places, the Hubs bought me a heavy duty Gorilla Step Ladder. It’s nice and sturdy. It is a tad heavy but manageable. Now I can get down paper towels when he’s not home. I also have a handy grabber. It’s just a stick with a grabber clamp on the end so I can get bottles of stuff down or pick stuff up off the floor without having to bend down to get it.

Image: Step Stool
Image: My Gorilla Ladder

The last suggestion I have is super simple: make a cleaning schedule. I have one sketched out for weekly, monthly, quarterly and sometime, if I am ever rage cleaning and need to release some anger, I have three projects written down that I want to complete at some point in life.

It just makes my life easier if I know I’m supposed to clean the bathroom every Tuesday. It doesn’t mean I will. It’s not set in stone, I have M.S. and am a Mom. A thousand other things could come up on Tuesday, or I could just decide to leave it for another day.

Do you use any products that make your life so much easier when it comes to cleaning up life?

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Things I Find Helpful {Beauty Edition}

There have only been a handful of times that I’ve needed to wear makeup in the last year or so. I know how to do my make up so I look nice but I am no where near talented when it comes to those amazing make up looks my nieces can pull off looking like celebrities. When you add shaky hands and fatigue in the mix, makeup can be the last thing I want to do, but sometimes, it necessary.

Image: Sarah’s makeup 2 n 1 products

Over the years when I am low on energy but I need to get my face done, I have come up with what I call my “5-5-5 Face.” Esentually, it breaks down like this…

5 minutes on my face, I use a foundation primer with build in highlighter. Then I apply my foundation with a beauty blender.

5 minute rest break. I sit on the floor, the side of the tub, really anywhere just to give my leg a break from all the standing.

The last 5 minutes I do my eyebrows, eye’s and lips. Since I am trying to look presentable but not exert too much energy, I use cat-eye stamps on my eyelids. I takes seconds to stamp it on and BAM! Already looking fierce! Then I use a highlighter crayon to cover my eyelids for a slight glow. I add mascara and my eyes are done!

Lastly, I use a dual cheek and lip color. I pat the color directly to my lips and cheeks and blend it in. If my hands are too shaky, all this may take slightly more than 5 minutes at a time, but you get the idea!

A picture ofSarah sharing her 5-5-5 Makeup Look

To wash my face I use a makeup remover towel. You just wet it with lukewarm water and take off your face! I also keep a pack of makeup remover sheets next to my side of the bed for those nights, I am just exhausted.

During March, when lockdown was still being strictly enforced, I decided to start using up all the little, random samples of products I had laying around my bathroom cabinets. It feels good to use them up and clear up space but by doing this, I was able to find out that foundation primer plus highlighter was even I thing!! This sample is almost out and I will be purchasing the full size Smashbox product.

Do you have any products you love? Any time saver products?

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Stress Triggers and Cutting the Cheese

I hope everyone had happy holidays!! Ours was very chill and relaxing. The kids were excited at gifts they received. The Hubs and I cooked a delicious dinner of beef tips, mashed potatoes and asparagus. We watched WW84 and we’re bored.

I baked a crap-ton of cookies the days leading up to Christmas. I also made homemade cookies and cream ice cream and even baked my first ever cheesecake! It was all so yummy. We gifted some to some family and friends before Christmas. (Ring Doorbells sure make it hard to “Ding Dong Ditch!”) I enjoy baking and I am pretty decent at it. However, I know that when I am stressed out, I stress eat. This is a main reason, I have scaled back my baking (or try to give so much of it away.)

Image: Homemade Cookies and Cream ice cream served over a warm brownie

In the 3 days since Christmas, I have stress eaten so much of it. (I know that I am stressed right now by someone close to me being Covid positive and how I feel all the emotions about that.)

I know that when I am stressed, it triggers me to stress eat or stress shop.

I’ve gotten so much better about stress shopping. In 2019, I challenged myself to not buying any new clothes for a year. I had to break my challenge for two occasions when I needed outfits for two specific events and the clothes in my closet would not work. I don’t consider this failing, just more of an asterisk.

In 2020, I had to adjust to online shopping. Let me just say, I do not like shopping online. Unless it’s things I have previously bought so I know how it is, like gallon size plastic bags. In the early months of 2020, I bought so many things online that were the wrong size or the wrong type of thing and returns were hard.

As the depressing months of 2020 dragged on and I would be triggered by living through a global pandemic, I would add things to my cart, look at the total and close my browser and the urge would pass. If the urge didn’t pass, I’d put it in my online cart and wait a few days to see if I still needed/wanted it. Most the time, if I took a break, I would not feel like I HAD to buy whatever I had patiently waiting for me in my cart.

When I am triggered to shop, I now can take a step back and analyze what the deeper issue is.

I have not learned to control my stress eating, other than to just not have anything sweet in my house. I momentarily feel control and comfort when I eat these things. Then guilt kicks in. I have left myself notes, I have told myself to go do something else, just walk away, but it is so much harder to change my mindset to do with food.

Image: My first ever attempt at a cheesecake

I have been having stomach issues for the last few years. Prior to the pandemic, I was working with a nutritionist to help my stomach and to hopefully figure out what foods trigger inflammation and stress on my guts. At the beginning of December, I started to track what I ate on a food app. I stopped noting things when I realized the closer we got to Christmas the more, I should have been adding entries like, “ate 13 chocolate fudge cookies”, “had 2 bowls of ice cream”, etc. but I was embarrassed to share my truth on a private app, no one else would see.

Long story short, I have made the decision to cut dairy. I should cut carbs too. (I have an allergy to wheat and yeast but I love me some carbs.)

My game plan is to slowly cut milk products. In researching, I have found there are so many lactose free options that it seems really doable. I will eventually cut the cheese out, haha. So many people on Instagram suggested great brands to try for cheese alternatives.

As I am doing this, I am trying to be more mindful of the carbs I am also eating with the hope, I get in the habit of cutting those too. We have made the switch to organic meats and wild caught fish already. I am telling myself this is a change in lifestyle and it needs to be done with different choices. The physical pain from when I accidently poison myself with food is still seared into my brain and I try to remind myself of that when I get all boo-hoo about these changes. Sarah, it is not worth the pain.

I know myself well enough that I have to start with very small, POSITIVE, baby steps or I will just quit outright. I added the foods, I ate today to the app. That’s a small positive step!

I am uncomfortable but determined to try. Have you made a big food cut like this? Do you have any tips? I feel like there are so many different food options out there, I really have no reason to not make the switch other than myself trying to stand in my own way.

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Sign Your Name On The Dotted Line

My kids started school on Friday. It’s dumb to start school on a Friday but it’s 2020 so I didn’t waste a lot of time thinking about it. Their first virtual day went really well. I was panicked last week (you may recall my complaining post about school starting) but it went really well. The district said they had worked really hard to make it so it would be like you’re kids are at school but most importantly you wouldn’t need to be right next to them like the end of last year, March to May.

I think there won’t be any issue with my daughter getting her stuff done. With my son, we might need to check on him a bit more throughout the day but he is asking for more independence, his teachers are asking parents to give the kids more freedom and so we decided we will also try to give him more time and space to be self reliant, to find solutions on his own before we race in to help him out or redirect him.

With the start of school comes the ginormous school packets of emergency cards and school agreements you have to fill out and sign. They have to be refilled out every new school year. As I was scribbling the forms out, I was reminded again of how ugly my handwriting has gotten. In high school, I used to have bubbly, flowing handwriting. My first job our of high school was at a bakery and I had to write obnoxiously, curvy letters in buttercream on cakes so my handwriting took on the same loops.

Two years ago, I lost feeling in my body from my collarbone to my toes. My hands basically quit working. I did 7 months of OT learning new ways to do things. The feeling has since returned but my hand strength had deteriorated and never came back to it’s pre-MS levels. I notice it more and more in the mundane activities of life. Taking a lid off a bottle. Filling out stacks of forms for two kids. Trying to flip the lid open on my shampoo. Fine motor skills if you will.

An assortment of pens that Sarah used to practice how to write again.

I get bored filling out the same info over and over so anytime a form asks my occupation, I put “Domestic Goddess” because its just a better title than Disabled. I always wonder if it gets caught by any data entry person as they just retype whatever I’ve written on their stupid form.

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Raise Your Hand If You’re Secretly Bummed It’s Back To School

Raise your hand if you’re secretly (or, not so secretly) bummed out that your kids aren’t returning to in person school soon?

Mine start Friday. I am already dreading it. I haven’t had a break since March. I love them but Momma needs some alone time!

Don’t get me wrong, I am grateful that our district decided online was the safest option but when they’re in school, I get free time. I wander around Target with my Starbucks. I watch my shows in peace and quiet. I take long uninterrupted naps!

March to May their teachers did the best they could. They were thrown into an impossible situation. They were doing school about half day, split between workbooks and online learning. It took minimal supervision from me or the Hubs.

After talking to my son’s new teacher today, I learned they will be online the full 7 hours- breaking for recess and lunch like they normally would be at school. I haven’t heard from my daughters school yet on what it will look like but I am assuming it’ll be the same. Both of my kids are squirrels. This means that we are going to have to check on them often throughout the day to make sure they are actually doing whatever they’re supposed to be doing on their computers in their rooms while not being distracted by literally anything else when they mentally check out of whatever their teacher is saying.

Momma don’t got time for this! I am trying to remain positive and put on a smile for them. I am trying to talk it up. I am not talking badly about the situation in front of them. My daughter especially is sad they aren’t going back to in person because she misses her friends so much. Even a hint of annoyance on my part and her attitude about it grows to where she just CAN’T. (Tweenager)

We have to set the tone for them.

So the tone is: This Isn’t The Greatest Situation But We Will Get Through It.

But you guyyyyyysssssss…..this sucks.

I am trying to be optimistic but I am realistic too. I don’t see how this will go well for either of my kids. I don’t know how either of their IEP’s can be implemented either. I suppose it’s like MS, I just have to not overthink it too much and take it day by day, take whatever is thrown at me like a warrior.

Send Starbucks on Friday. I can sip it when I sneak out to the yard to cry. (I am sure there will be crying the first week or so by one of us.)

Also send Starbucks to working parents who are having to supervise their kids while they work from home. Those parents are heroes. They probably need it more than me. Send them the biggest size Starbucks. They deserve it. I’m just stressed out and whining.

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I Burst My Bubble!

I burst my bubble and finally left the house Tuesday. Other than going to the dentist a few times in June and July, random drive-thru cravings (masked and heavily hand-sanitized before and after) and porch visits to my parents and sister’s houses, I hadn’t left my house since March 12th. No matter your views on the pandemic, I am taking it like it literally will kill me because my doctors keep reminding me it might due to my immune system. Maybe it’s overreacting but I am not willing to be a test subject to find out.

I have been going crazy the last week or so in my bubble…the safety of my house and yard. The Hubs suggested we go to the beach. It took me 3 days to decide to go. We talked out all the scenarios we could think of when you go to the beach…parking, too many people, people not masked, etc. We finally decided we would go very early and leave once people started arriving. The kids start school again next week so if we were going to go, now was the time!

We woke the kids up super early, packed up the car and headed off by 7:30 am You guys, I was so nervous! There were so many cars on the freeway. I didn’t say much on the 45 minute drive out there.

Newport Beach, California

When we got to the beach at 8:15ish the parking lot was pretty full so I got even more nervous that there would be too many people and I wouldn’t feel safe. We started unloading the car, the kids were ready to jump in the ocean and I was just knew that when we got to the other side of the shower area that the beach would be jam-packed!

However, I think most of the people that had parked in the lot, were on the pier fishing because there was only one other lady and a smaller child on the beach. I felt so relieved and I finally relaxed.

We started to set up our spot. We purposely packed two huge comforters to give us a big area so hopefully no one would sit close to us. The Hubs and kids went down to the water. I sat taking in the sound of the crashing waves. It was really soothing. Doctors keep asking me if I am feeling stressed or depressed and I’m like, “Of course! We’re living through a pandemic.” After just sitting on the beach for awhile, I felt refreshed. We also saw a big pod of dolphins swim by too.

We left once it started to get crowded around 11:30. Most people were wearing masks. I also noticed people seemed to be walking far away from others to avoid getting too close.

Variety of seashells my kids collected

On our way out of town, we stopped and got my favorite shrimp tacos.

The BEST Shrimp tacos from GreatMex Newport

What are things you do to de-stress these days? Do you feel like they help you relax?

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My MS-Diaversary!

Sarah’s Facebook status

My 8 year Diaversary with MS (multiple sclerosis) was on Wednesday. Yes, I made cupcakes. It’s a day I recognize. I wouldn’t say I celebrate it. July 22, 2012 was a day my life changed forever.

The Hubs is the part of us that asks questions. I am the one who takes in the information and then figures out a game plan. The night I was diagnosed, I was alone in the hospital. The Hubs had gone home to get our kids from my sister, who had watched them all day while I was at the ER.

The doctor came in and said something along the lines of, “Based on your MRI and CT, you have Multiple Sclerosis. Do you have any questions?”

I just stared at him. I begged my brain to ask questions. The type my husband would think to ask; questions I knew he would ask me when I called him in a few minutes to drop this bomb on him too.

I stared at the doctor. It was shift change and both the day nurse and the night nurse were holding my hands as the doctor had came in to give me the diagnosis. I stared more. Finally, I asked the only question I could think of, the question that to me, made the most sense with a husband, 2 toddlers and a bunch of people who loved me.

“Is MS terminal?”

He responded that no, I could live a normal life with MS with minor adjustments here and there. I had gone to the hospital because my leg had been going numb on and off for months and suddenly, I couldn’t feel my leg anymore at all. It was like it was just gone. It’s an eerie feeling to see it and not feel it.

Then he dropped a second bomb. He couldn’t tell me yet if I’d be able to walk anymore since it felt like I no longer had a left leg. He wasn’t sure if or when the feeling might return. He wasn’t sure if the feeling did come back, if I’d be able to walk with or without assistance yet. They would start steroids and see if that helped. Then he asked if I had anymore questions and I went back to staring at him. He told me he’d be back in the morning. Once he left and I registered what he had just told me, I started to cry. Both of the nurses sat with me until I finally stopped crying. They both gave me huge hugs. They made me feel like I was their only patient in that time.

I called the Hubs. I called my parents who were out of state on vacation. I called my BFF who had spent the weekend with me at urgent care and then came to sit with me at the hospital while they ran tests all day the next day.

After answering every ones questions (which I wasn’t very good at) and digesting this news in my hospital bed, I decided that if Multiple Sclerosis wasn’t going to kill me, than from then on I was going to do my best to LIVE every day.

Except for a very dark time in 2015 (That’s for a different blog post), I’d say I have done that.

I pick my battles, I make honest decisions about if something is worth my time and energy and if it’s not I say so instead of feeling obligated. I’ve gotten very involved with the National MS Society. I advocate for MS awareness. I share my story. I am always available to newly diagnosed people that want to talk and ask a million questions because while I am not great at asking questions, I love talking to people. I also vividly remember how scared I was in that hospital room by myself that first night.

The next day my cousin text me the number for her former boss who had MS and said I could text or call with any questions I had (She is my MS Fairy Godmother now!) A nurse from a different floor also came down to introduce herself because she was also living with MS. We talked for a long time.

If you’re newly diagnosed or living with MS, I encourage you to find someone you can talk to about MS. The National MS Society has Peer Connections. There are so many groups on social media that you can join to ask questions, there are in person support groups. You can leave a comment below and I’ll respond.

Sarah using her walker in 2012

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Where Have I Been? Uh, Mostly Laying In Bed Watching Hamilton Non Stop. (You Get The References, Right? It’s Ben Franklin With The Key And The Kite…)

I have been feeling like crap for 3 weeks with my leg. I’m not sure if it’s because it got really hot in So Cal or if it means new lesions. You never know with Multiple Sclerosis, I guess. Well until you have another MRI and then you know. My left leg is always a jerk but starting in late June I got this new horrendous pain in both my leg bones. It hurt so bad I needed help doing any movement.

It finally got so uncomfortable and I could no longer walk on my own, that I did call my neurologist last week to talk about my leg bothering me so much. He asked why I let it go on for 3 weeks. I didn’t have a great answer other to say that if I call him every time I have a leg issue, I’d be calling him all the time. He laughed. When he reviewed my meds I take, he said I must have a high pain tolerance because I don’t take anything for MS related pain. The dentist just recently told me this too. I probably do have a high pain tolerance. I am also stubborn as f**k. I don’t like asking for help. I don’t want help and if I’m being totally honest it’s a deep rooted survival instinct I have from my youth. So instead of being perceived as weak, I buckle down until I just can’t take it anymore. It is something I am aware of and am trying to be better about asking for help sooner.

We decided to change my anti-depressant to an anti-depressant that also doubles as a pain relief pill. I haven’t started it yet because Sunday night when I went to take it, I thought it might interact with another med I take at bedtime so I emailed him yesterday to ask. I’m sure I’ll hear back today.

I take so many medicines for other things I have developed in addition to my MS that I tend to advocate to not take additional meds unless I really need to, like for high blood pressure. My doctor agrees with me for the most part. I am still fairly young and I worry about the long term effects on my organs. We did have a lengthy discussion about changing from Ocrevus, to what will basically be the monthly version of Ocrevus but in shot form instead of infusion form because of the on-going pandemic. It is supposed to be available in September according to the FDA. It’s called . He said because of Covid, he thinks it would be good to have an exit strategy on my immune system, that if I get Covid, I could just not take my shot and my immune system could try to start rebuilding itself monthly, instead of now where I have no immune system for 6 months and it starts to regrow and we go in a bomb it again for another 6 months. It’s normally stressful having a compromised immune system but it’s very scary when there is a pandemic going on.

I’ve been on 4 other MS DMD’s (Disease Modifying Medications) over 8 years. Like so many, I started on injections. You give yourself painful shots of medicine daily or weekly. I started on Copaxone and my MS continued to progress right away. Then I was on Avonex for about a year and a half until my MS progressed more. Next I was put on Gilenya, a pill I took daily. That was great. No more painful lumps and bruises at my injection sites. I took Gilenya for about 3 years until it stopped working. 2 years ago, I lost feeling from my collarbone to my toes on both sides of my body. An MRI showed my MS has progressed into my spine. (It’s no good when MS moves into your spine) I started Ocrevus. I like going to the infusion center twice a year. I don’t like giving myself shots. I feel really good on Ocrevus 4 out of the 6 months I take it. I also understand my neurologists logic about switching back to a shot if it means it could help me fight Covid if I got it.

I can walk normal (well MY normal) again but mostly I have just been laying around and sitting around the house the past week or so. I have watched Hamilton a million times. I was supposed to go see it twice this year but both times it got cancelled and I didn’t get to go. The Hubs and I also started watching all the Marvel movies in the Marvel order. We are about half way done with the 23 movies. (We already watched all the Star Wars movies in order because my son wanted too.) I swear I have never watched this much TV and movies as I have during this quarantine! I should also have been packing to leave for Hawaii for the first time ever this week. The quarantine has taken a lot away this year but I am still here. So far the few family members that have gotten it have recovered. A friend I went to high school with passed away from it so I’m taking it seriously.

Mostly, I am trying to focus on the unexpected time I get with my hubs and kids. I am not a saint. There are many days I wish they were are work and school so I could have some alone time. I hope in months/years, I look back at this crazy time of 2020 and think back to the late night conversations I get to have with my daughter right now. To the random facts my son shares with me about whatever he is fascinated with at this moment. That even though I could never have imagined being on lock down, that my Hubs still makes me laugh and always brings my drink from wherever I have sat it down and forgotten it so I stay hydrated. I hope you can find ways to cherish this time- to grow yourself, to not take this time for granted, to look at the little things, to learn a skill you always wanted too…to remind yourself eventually this too will pass…

Oh and if you watch Hamilton, first time or hundredth time, pay attention to the background actors- they tell such an amazing story with their movements, it’s mesmerizing to watch as much as the main characters are.

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June Cleaning Challenge: Getting Down to the Wire

There are two days left in June and I still have 6 things on my official 30 item declutter list to cross off. They are all big, time consuming ones and I don’t foresee me getting in all done by Tuesday night. I am going to try to take care of 2 particular ones on my list by Tuesday because they are ones that are inside my house and that make my anxiety rise thinking about them. One is what I call “The School Box.” It’s things my kids have done in school- art projects, report cards things like that. I need to split our one box into two boxes because my kids have gotten farther along in school and we are running out of space. I could also see if I can thin it out. They don’t need every adorable thing they ever made but I always like when I run across things I did in school now as an adult. The other is my craft stuff. Currently it is jam packed (I need another word but that is the only way I can describe it) in my son’s closet. It is the only place I can currently store my craft items but it isn’t in a very user friendly way. I make wreaths and I buy cute things as I find them. I have so much cute “would look good on a wreath” items that I don’t even know what I have so I need to get that better situated. I think this may take a whole day if not longer.

I did knock out 3 items yesterday- I cleaned out my wallet. No picture of that. Mostly it was used of gift cards and random receipts I no longer need. Took two minutes tops.

I also tackled two hallway drawers that had gotten out of hand.

The top drawer I store school supplies in. It has gotten to where you can barely open it so I wanted to go through it to see how I could reorganize it. I also had things that I had bought for my son’s birthday party school bags but we never used them because school went home-schooled before his birthday happened. I pulled all those things out and put them together in a bag in his closet. It also had my son’s visual cue cards in a mess of little pieces in there so I found all of those and put them in a zip bag. He doesn’t really need them anymore but I don’t know that I want to throw them away either so at least there in an order in there now.

The Madness
Random School Supplies
School Supplies in one smaller bag
A much more organized fashion

The bottom drawer is where I store our Road Trip Essentials. Pre-Covid, we have always traveled every summer. My kids are great road-trippers as long as they have entertainment for the car. After last summers 3 trips, when I unpacked all, I just dumped everything into the drawer. I went through all the DVD’s and moved them to where I keep our travel DVD players. I threw away coloring and activity books that they had used up. I put the travel card games back in order. It was pretty fast.

Stuff just thrown in
Cleaned up

I think I’m going to go find something to watch on TV while I go work on the school box for awhile now.

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Advocating…Virtually

I was invited to join the National MS Society for California State Action Day at the end of March in Sacramento. We would be meeting face to face with our representatives to share our stories of living with multiple sclerosis.

I was thrilled! I was going to leave late Sunday night and be back late Monday night after spending the day in Sacramento for a quick overnight trip. My husband would get the kids to and from school. My parents would watch them while he was at work. I was going to have to figure out how to do a Lyft/Uber ride from the airport to the hotel. It was all worked out, and I was so excited!

The week before I was supposed to leave, the COVID-19 pandemic was unfolding rapidly before our eyes. I started to feel nervous and emailed my neurologist for his advice on going or not, and he shut it down. I wasn’t really surprised at his reasoning. Northern California had a lot of active cases of COVID-19, and they were the first cities in California to order shelter-in-place.  I was heartbroken. Then the next day, the National MS Society emailed us all to say they were cancelling any in person meetings, and they were hoping we could all meet in June instead.

As the pandemic continued on and states shut down all over the country, we received another email that said to mark our calendars because we would now be meeting virtually in May!

I joined the online training meeting to learn more. First, they recapped what they accomplished on last year’s State Action day. The advocates helped get a bill passed to help make people’s homes more accessible, instead of having to have seniors and people living with disabilities move to nursing homes. Early prevention often saves money in healthcare costs in the long term and gives better quality of life to people so they can stay in their own homes. 
Advocating-Virtually.jpg
Ready for the online training meeting!
Next, we discussed the two bills we would focus on help getting passed this year. The first, AB2730, will eliminate barriers to emergency evacuation for vulnerable populations during emergencies. In California’s current disaster planning, the rescue workers know where to take people but not how to get them evacuated to those places. This bill will enable cities and counties to communicate and form partnerships for transportation services during emergencies. The second proposed bill, AB2064, would require all county emergency planning committees to include people living with disabilities to be included in the planning of the California Disaster plans. People with disabilities are two to four times more likely to be injured in a disaster.

I exited the online training excited to see what State Advocacy Day would bring.

I received a text message telling me to wear orange and meet online for our kickoff celebration. There were over 40 advocates on the video-meeting. John Strum of Real Talk MS podcast hosted the kick off. We re-capped what we would be messaging our representatives about, and we took a group photo (and that was the exact moment my computer froze!)

I received a text message that I just simply needed to enter my personal info, and it had an already generated email that once I pressed send, would go directly to my representatives. You could also edit the email to make it more personal before it was forwarded on. I chose to edit it. I believe both of these bills would be helpful to the people in California, and I shared why. We had a really bad fire season a few years back, and after the fire had ravaged homes and they were searching the debris, they found numerous people who were disabled who died because they couldn’t get out for various reasons and that had stuck with me. 

I hope I get to go to Sacramento next year. But if not, this was a really easy way to advocate and participate to help bring changes that may improve the lives of people living with disabilities.

I guest wrote this post for the National MS Society’s blog, MS Connection.

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My MS Teeth

I remember when I was younger my Granddad told me, “Always take care of your eyes and your teeth because you only get one set of each!”

I went 5 years without going to the dentist once because I couldn’t afford dental insurance through my job or to private pay for services. When I finally got dental insurance, they only found 1 cavity. I was so relieved it wasn’t worse.

On Friday, I was eating and suddenly felt something “POP” off my tooth. I looked in the mirror and couldn’t see anything but I could definitely feel a hole in my tooth. I called my dentist’s office and they said the soonest they could see me was Wednesday because they are only taking emergencies in first come, first served order and seeing regular patients half day to keep the waiting room to a minimum. I said Ok and took the appointment for today. My tooth hurt really bad on Friday but by now, it’s just more annoying that I can feel the hole on the side of my tongue. I also have to remember not to chew with that side of my mouth or it does bother me quite a bit.

I was a little scared to go today. Just being in a waiting room with other people and have my mouth exposed without a mask while they looked at my tooth made me really nervous. I have gone to my current dentist for 7 years; I trust them it’s just the social anxiety of Covid lurking now.

When I walked in, they had every 2 seats roped off so you couldn’t sit directly next to someone. They installed plexi-glass windows above the counter now to talk to the intake staff. There are signs every where that masks are required or they will not see you. There was only one other person in the waiting room when I got there.

They took me back for x-rays. Then the dentist came and looked at my tooth. He asked me how much pain I was in. I garbled my reply. He said, “WOW! You must have a really high pain tolerance, because this should have hurt you enough that you came in months ago. You need another root canal!”

Yes, another! I have had 3 in the last 6 years. I get a cavity and it morphs into a root canal later down the road. I am not sure if it’s because of MS or because of my meds for my MS but my teeth are definitely not in the best shape anymore.

Since I was there, I got my cleaning that I was due for in July. I said goodbye to the ladies up front and when I was back in the lobby, there was only one man there with a face mask on.

Medi-Cal won’t pay for root canals so the dentist has a grant program that will cover it at no cost to me so they said they’ll call me back in a few weeks so I can come into get it patched up. I think it’s weird Medi-Cal won’t pay to take care of your big damage to your teeth. Studies have shown not taking care of your teeth leads to so many other health issues. Has MS (or another autoimmune disorder) messed with your teeth?

Masked up in the waiting room
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June Challenge..I’m Finally Caught Up! Day 18,19,20,21 & 22!

I am going to try so hard not to bore you with 5 cleaning up entries even though this is one post that covers 5 days worth of cleaning but I completed 5 over the weekend and today so I am back to being caught up on my little June Cleaning Challenge!!

Over the weekend I worked on stuff in my kitchen. These 3 cabinets have gotten so out of control over the course of lock-down. I’m not sure the before and after pictures really show that much progress but I can tell and I think ultimately that’s what matters for my sanity!

I love baking cupcakes. I have also tried to get in to stacked cakes but I am VERY not good at those. I make really fun cupcakes but once I am done baking, I’m pretty fatigued from it so many times, I just shove it back into this cabinet (#18). I went through it and separated it by items. I threw away old chocolate and sprinkles. I reorganized my supplies into smaller bags to be kept together like liners, cake pop sticks, piping tips and assorted candy baggies. I put all of my molds into a basket because that just made sense. I also put my kids cooking utensils together and closer to the front so they can pull them out easier. I think it’s hard to tell from the “after” picture but the stuff in here, doesn’t come as nearly to the edge as it did.

If you close the door fast enough, things don’t puke out!
It still looks disorganized because of the white bucket but once you move that it’s in a much better order.

The cabinet where we keep our pots and pans (#19) has been very well used since the Hubs has been home and cooking for us daily; sometimes multiple times a day. I also have cooked or baked things on and off. This cabinet has one door and goes in deep to the side so things in that back corner are hard to get to. I took everything out to put it back in a better use of the space.

My big stock pot was in the dish drain (hence the big empty space.) I made the Hubs clam chowder for Father’s Day lunch.
Better side organization and space upfront of the daily used items.

This cabinet gets used daily. The stuff in here gets used often enough that I feel like it needs to stay in the house and not out in the garage or pantry storage area. I moved my Pyrex dishes in a better order since if I cook I use them a lot. The pans I keep upfront because we use them every day. (Side note, I just hosted a Pampered Chef party and earned a ton of new kitchen gadgets and I have no idea where I am going to store them all! But that’s a problem for 6 to 8 weeks from now…)

Next, I worked on our upper corner cabinet (#20.) Same issues- lots of used often items but a weird storage space. I worked shelf by shelf to rearrange and clear things out. I kept a hand on my daughter while she stood on the counter and handed items down from the 3rd shelf to me. During this clear out, I found some Tupperware items that are in great condition but we don’t use so I’ll list them for sell on Mercari.

Stuffed in wherever there is room.

I wanted to straighten up the items we use a lot in this cabinet in to a better use of space. I also can only reach into the bottom shelf with out my trusty step stool and now that it’s getting warmer, I don’t trust my leg to hold me safely on the step so I wanted to move things I need more at arm’s length.

The Aftermath

I hardly ever watch reality TV but I found a show called “Married at First Sight” and was intrigued. I watched the whole season over this weekend.

I should straighten that up

Around episode 5, I told myself if I was just watching TV, I may as well 3 hole punch and file that pile (#21) over there in the bottom corner and then put them in the storage folders they need to go into. So I did. I think it took about 3 episodes. I’m not sure I would go out of my way again to watch “Married at First Sight” on the regular but if Netflix puts on another season and I’m short on things to watch or I want background noise I’d play it again. I found a box to put that stuff on top of my “house walker” to have the Hubs take to the thrift store. I found a place for all those science experiments my parents dropped off at the beginning of lock down for the kids. Summer school is over next week. My daughter wants to take July off to have a little bit of summer feeling. She will still have saxophone lessons and math tutoring but no summer school means she can sleep in and relax more. My son opted to do it again in July. We will probably get into those kits sometime in July though.

Done!

Today I went through the cords in a box that is in our hallway (#22). I was brutal. If it was a cord that had no obvious use, I trashed it. The stuff in this box has probably been in here over 5 years and we haven’t seemed to miss it yet, so off with it’s head so to speak!

Where cords go to be forgotten!
The Survivors

I did throw away one of those remotes that’s pictured. I kept 2 HDMI cords and an extension cord because those seemed good to keep on hand. I am sure we won’t use most of what’s still remaining in this box but I am glad to not have random cable lines and adapters just lurking in it.

These are not in any order to complete but the last 8 on my list are: Hallway Top Drawer, Hallway Bottom Drawer, Scrapbook Box #1, Scrapbook Box #2, Kid’s School Box File, Craft Area, Craft Box in Garage, Clean Out Wallet. 7 out of 8 are monsters!

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June Challenge 14, 15, 16, & 17….I got so much done today!

Oh man you guys. I woke up early with a burst of energy and I knocked out 4 challenges on my list all before 1pm! It’s a refreshing June-Gloom type of day so it didn’t even start getting warm until noon.

The Hubs and I cleaned out the fridge and freezer (#14). We went to town! We pulled out and washed all the shelves and drawers. We threw out expired stuff and we reorganized the items in the door into a better system. It’s all sparkly shiny again.

Refreshed Refridgerater

Then I went ahead and straighten out the cleaning supplies that are under the kitchen sink (#15). It’s not that they were messy as much as I wanted to reorganize the bottles that we use the most when we clean so we don’t have to dig around through numerous bottles to find the one we want. Window cleaner and surface cleaner get used way more often than carpet cleaner for example.

Under the kitchen sink

We got in to the habit of unpacking the groceries together so the pantry has been a bit disorganized because things were just thrown where they fit. I have it labeled on the shelves where to keep stuff. Not because I am super-organized but it helps remind me of what we need when I do grocery shopping (or add items to the Hubs grocery list.) I also went ahead and threw out expired pantry stuff.

Pantry BEFORE
8 Bottles of the most yummy BBQ sauce
Baking section
In a more organized fashion

So since I was already cleaning out the pantry area I thought I better just go ahead and clean out the storage area above it (#17). On the very top shelf are some cooking gadgets – my instant pot, a Minnie Mouse waffle iron, our George Foreman grill that I don’t want to part with but rarely gets used. The shelves that the kids and I can reach tend to be much more messy. There is a basket of snacks for the kids. We have extra lunch bags because the kids are notorious for leaving their lunch pails at school. Much of my entertaining and holiday plates are on that shelf. I spent time putting all the random plastic utensils in one big bag so they aren’t just in 4 different half used boxes. I reorganized my baking pans into a more practical set up because I use them very often, especially since I’v been home on quarantine, I’ve been baking quite a bit.

Such a Mess!
So much better!

By my count I am only one challenge short for being back on track to 18 (since today is the 18th of June.) I’m not planning on doing anything more today and I’ll probably just double up again one day in June. Almost all are BIG, time consuming projects so I’m not sure what I’ll pick to do next. I am feeling relieved to be crossing off these things that have stressed me out for the past 6 months and I am glad I am taking the time to take care of it now. ‘Cause for real, what else do I got going on?

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Today Was a Great, Productive Day!

I don’t sleep well when it’s hot but last night I slept all night without waking up multiple times and then slept in this morning too!

While the kids were doing summer school, I decided to email Governor Newsom and my local representatives about the proposed California budget and asked them not to cut K-12 education at the school site level. I wrote to our school district superintendent as well to ask the same thing. I feel like the pandemic has amplified how important schools are to children and the emotional safety net they provide whether it is food or social support, schools are so much more than just learning subjects. For my own children, at the beginning of the pandemic when it was big and scary, their teachers provided structure and routine that they desperately needed. Both of their teachers went above and beyond for their students in many different ways.

I received a reply from my superintendent within an hour and a half of sending my email. It was personal and addressed my concerns. I understand cuts must be made but I hope they really try to cut other places first; teachers already put some much of their own money into their classrooms.

I have been in my house 97 days now but we do leave for occasional drives and today my Hubs said, “Let’s go for a drive!” So we headed off to our local mountains. It only took us about an hour and a half overall but it was really nice to cruise with the windows down, feel the breeze and to look at nature.

Driving up to Mt. Baldy
This Tunnel was built in 1954

On the way back down, my Hubs pulled over and he and the kids got out to look at the creek below. I sat in the car.

My selfie while they selfied

I did start reorganizing my pantry this morning for a Cleaning Challenge but so far I haven’t completed it. I’ll work on it more once I finish this post. If I get it done before bed time I’ll count it for today. It’s a BIG one so we’ll see…

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Where Has Customer Service Gone?

When I worked, I was a shipping supervisor and customer service rep for a manufacturing plant. Occasionally I got calls from angry, frustrated customers for all various reasons. I know the customer is NOT always right but for the sake of doing business, most of the time customers need to feel appreciated when they are frustrated. There were a few times the problem was so big, I didn’t have the authority to fix the problem in the way the customer wanted so I would have to go to the GM to get approval on something I had worked out to keep the customer happy or for us to fix our error. There were even times, when the GM wouldn’t budge on certain things the customer was asking for but for the most part we always tried to maintain the RELATIONSHIP between us and our customer.

I have spent literally my whole day from noon on hold with Expedia to try to get a refund that Hawaiian Airlines agreed to give me but says Expedia has to process as we bought through them. I held for 3 hours to speak with a supervisor since they are the only ones that are authorized to refund me. This is after multiple calls and emails to Expedia and Hawaiian Air regarding this matter for weeks now. I finally hung up after the 3rd hour because I needed to get dinner ready for the kids. My (very nice) customer service rep called me back right away and asked me to hold on 15 minutes longer because I was “almost” next. I agreed. After 45 minutes longer, I told the Hubs, I would wait 15 more minutes and then hang up again and could he please start dinner while I waited.

When the supervisor finally answered almost an hour later, he read back to me the notes that were in my account and said that while he see’s that Hawaiian did offer to grant my refund, the code they gave was invalid and “honestly, I shouldn’t expect to much to be resolved.” So I came back at him with the same tone of voice and firmly asked him to contact Hawaiian if there is an issue with the refund number they gave because all I could go off of what the email Hawaiian gave me and it sounded like an internal issue. I have since been on hold another hour with the supervisor while he is supposedly talking to Hawaiian to resolve this for me.

I had lot of time to kill while I have just been sitting here wasting time on hold and found so many forums of people upset with Expedia via Facebook and Instagram. It is unfair that people are not getting their money back on travel related stuff due to Covid especially after the airline government bailout said airlines needed to give money back to consumers if they asked. I also found lots of email addresses for Expedia’s higher ups if this supervisor won’t refund me. A friend told me to dispute it with my credit card because services weren’t rendered. Another said to email the Attorney General for Washington state and file a claim with the Better Business Bureau.

For as many people who need/want their money back, there are others that are totally fine with a credit. In fact we have airline credits with 2 other carriers from trips that got cancelled that we were happy to take the airline credits with. This particular trip to Hawaii, we want our money back for the flight.

I’ve been typing this as I was on hold, so good news, they refunded it (as they should of since HA already said they would!) Phew!! It took all day but it’s resolved! Hopefully I don’t need to worry about it anymore but I got his name and ID number plus my confirmation number for the call. I guess you’ll know if I suddenly have a follow up post in 6 to 8 weeks!

Oh, again, no challenge completed today because this mess took all day to take care of!!

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Do you think Y2K Saw 2020 Coming?

20 years ago today, I graduated from high school. Class of 2000!

I remember when I was set to walk across the stage, I just kept hoping I didn’t fall in front of everyone because I had on ridiculous platform flats that at the time were the hottest shoe style. 20 years later and I am like, “Why on earth would I ever have worn those and thank god, I never sprain my ankle with them!” Ick. I sound so practical now.

I was having a blast with my friends and we were getting ready to head off in all different directions. There wasn’t Facebook yet. We all wrote our cell phone numbers in our yearbooks but texting cost a $1 a text and I was prohibited by my parents to use it unless I was in an accident. Aww the 2000’s! Remember Y2K was supposed to end the world when the computer dates reset at midnight on New Years Eve?

My tassel
I (hope) am laugh-smiling in this picture

We were supposed to have our 20 year reunion this coming up weekend but of course, it got cancelled due to the pandemic. It’s cool. I was also supposed to go see Hamilton that same night with my kids, so I was trying figuring out how to go to both things at once. Except, then Hamilton got cancelled too. So I guess now I’ll just be hanging at home Saturday night; the same thing I’ve done the last 95 days. Maybe I’ll ask the hubs to pick me up a mojito and we’ll listen to late 90’s- early 00’s songs.

I didn’t do a June Challenge yesterday. I was so fatigued all day. It’s gotten really hot in California pretty fast and I just get zapped in the heat and turn into a slug. I haven’t done one so far today either but it’s not bedtime yet so maybe I’ll still make it. I’d like to say at some point I’ll make up the ones I miss but I’m not holding myself 100% to it since it’s basically summer. And I am totally going to play the MS card if I don’t do 30 total by the end of June because it should be treated as a “Get Out of MS Jail” pass. I wasn’t and (am not) being lazy. My body is just working against me and makes everything so much harder.

My hubs literally caught me sticking my head in the freezer to cool off.

I can’t think of any cute way to end today’s random thoughts post. I don’t have any stories to tell; I’ve been inside 95 days. I don’t have any MS wisdom to share. I guess I’ll just continue to say, CUT YOURSELF SOME SLACK!! WE ARE IN A FREAKING PANDEMIC. My 17 year old self did not see this coming 20 years later. If all you manage to do is take a shower, gold sticker! If you change from night jammies to day jammies, gold sticker! Whatever you accomplish these days, GOLD STICKERS!!!

My jammies have pockets!

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June Challenge: Day 12 & 13 & a different kind of Challenge, one of my bestie’s is moving far away :(

You know how when something is planned for a really long time to happen and it just feels so far away until, suddenly it’s not?? My very good friend is moving next week out of state and I am so excited for her new adventure but I can’t imagine not seeing her weekly. Even during Quarantine she would do porch drop offs of supplies to me so we could wave or I’d stand in my driveway and she’d be on the street in her car so we were 6 feet apart and could talk with our masks on. She has the biggest heart and we have the same warped sense of humor. She knows my deep dark stuff. We used to watch true crime shows while the kids were at school. We have plans to continue doing that watch-party style once she’s settled and unpacked into her new house and all the kids are back in the classroom.

She came by yesterday so we could say good-bye and we talked for 2 and a half hours in the sun 6 feet apart. (I got a decent sunburn on my shoulders too.) That just proves my point of how big her heart is…she is leaving, knows I am NOT leaving my house for any reason, and so she came to ME to say goodbye. She offered to wave and wouldn’t hug me in case she had cooties but I told her she was worth the risk to me and we had a long huggggggggg. I hope she knows how much she means to me. (heart emojis) I know this isn’t forever. I’ll travel to see her at some point and she’ll be back in California every so often too.

Secret Bestie Stuff

Back to the Daily Cleaning Challenge, last night (#12) I cleaned up under my daughters bed. Some things we store under there because we lack space but more often stuff ends up beneath her bed because she kicks it there when she “cleans up her room.” We pulled out so many books from under there.

Today, I worked on the top shelf in her closet (#13). It was basically stuff that had accumulated there over time and that needed to be put in an order and sorted. I’m not attaching cleaning pictures because, both would just be blah pictures so I’ll spare you. You’ll have to take my Girl Scout honor that I did it. 🙂

After that, I spent a decent chunk of the day with my kids. We worked on a sequin unicorn picture my daughter had gotten for her birthday but we had never taken the time to put together. You take a tiny pin, put a sequin on it and push it in the the foam board to decorate a picture. It has 1900 sequins to put in it!

The very beginging
Farther along but we got as far as the while spots before we called it a day.

My fingertips are killing me but it was good OT practice on my gripping. I lost a lot of sensation in my fingers 2 years ago when I lost feeling all over my body from my collar bone to my toes for months. The feeling in my fingertips comes and goes now. My grip and hand strength have never came back to my “normal” before losing the feeling initially. My daughter and I worked on it for close to 3 hours. At one point my son came in to see our progress and commented, “That’s a cool gecko on the door.” I turned to see an alligator lizard on the inside of the screen door. My hubs relocated it to the yard.

I hope you had an eventful Saturday, minus alligator lizards.

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Today is LOVING DAY! June 12th

DISCLAIMER: I AM NOT A HISTORIAN. I GRADUATED HIGH SCHOOL AND HAVE SOME COLLEGE CREDITS, but with all that is going on in the world right now, with the demand for racial equality, with the Black Lives Matter movement, finally gaining the speed and the traction, it should have a long time ago, I feel it is important to share these two “history lessons.” I am sharing both of these because I think they are relevant to today but I am not trying to compare the two situations as they same thing. They simply both deal with racism.

Ten years ago, I was pregnant with my daughter and taking an online sociology course. As I recall, the chapter started about what constituted as a “marriage”. I remember the book was slightly outdated because Gay Marriage had passed in California in 2008 (even though it was fought in the higher courts for years before finally being upheld in 2013) and the book referenced that the fight for Gay Marriage was still being debated.

I remember reading a passage in the chapter about “The Loving’s.” I had never heard of them. Are you familiar with their name? They were a white man, Richard and a black woman, Mildred, that had been legally married in Washington D.C. because they could not get married in their home state of Virginia. They were arrested for violating the Racial Integrity Act of 1924 and had to flee their community to go live in Washington D.C. for 5 years where their marriage would be legally recognized. They always wanted to go back home to their small town in Virginia where whites and blacks got along even though, the time they were living in was the late 50’s, at the beginning of the Civil Rights Movement. Mildred wrote to the ACLU and with their help, their case went to the United States Supreme Court. On June 12, 1967, in a unanimous decision the ban on interracial marriages was lifted. Today is “Loving Day!” a day to mark the end of the ban.

Before reading their story, it had never occurred to me that I was in an interracial marriage. I was 27 years old the first time this ever even crossed my mind. We had been married for 4 years by then. My hubs is Mexican and I am a mixture of European decent (aka white with some other nationalities mixed in.) I had no idea that because of 2 people in the 60’s, I had the ease of being able to marry the person I wanted too. Thank you to the Loving’s for fighting the fight, on behalf of all the people who love people who are different races than they are.

Something else I just recently learned about was the Chinese Exclusion Act. I was listening to a podcast a few months ago (Mobituaries with Mo Rocca; Episode: Anna May Wong: Death of a Trailblazer) and learned that in 1882 the Chinese Exclusion Act was the first immigration law that excluded an entire ethnic group of people from immigrating to the United States and created huge barriers for the Chinese that were already living here. At the time the Chinese composed only .0002 of the nations population. If a white woman married a Chinese man, she lost her citizenship even if she was born in America. A Chinese man could not marry a white woman. White men were prevented from marrying Chinese women. The law was finally overturned in 1943.

My grandparents were allowed to legally be married 3 years later. I don’t remember my grandparents ever talking about this as actually being an issue for them. My grandfather was off fighting in WW2 while they were dating and they got married shortly after he came home. I do remember hearing stories about how my great- great- great grandfather immigrated from China via Hawaii. I remember always specifying that I had Hawaiian-Chinese heritage. (I wonder now as an adult and after hearing about this Act, that if due to the treatment of Chinese, this is why we always made it clear we were HAWAIIAN-Chinese; perhaps as a declaration to also point out we were of American decent.) I also remember my grandma telling me stories that during the war, she had to carry special identification to show she was Chinese and not Japanese decent, so she wouldn’t be taken to an interment camp. Ironic since just years earlier Chinese were so hated.

I don’t remember hearing about either the Loving’s or the Chinese Exclusion Act ANYTIME when I was in school. When my daughter was young, my hubs and I decided to raise our children with History. Along with our families and friends, we have always tried to expose them to histories and the fights of others.

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June Challenge Day 11: The Hallway Hideaway

I created this self-imposed challenge to CHALLENGE myself, so today… Go Big or Go Home!! Unless you’re already home like me, then clean up a big mess because what else do you got going on?! (Only if you want too. No pressure from me. Truly. Watch TV all day if you want. I will not judge. Quarantine is nuts and we all just gotta do what we need to get through it with no judgement.)

Anyway, we have a hallway cabinet that when I don’t know where to put something, I tend to shove it in this cabinet and walk away because out of sight out of mind, right?!

Today’s post is going to mostly be pictures because pictures speak a thousand words and do so much more than me just typing, “This was a cluster f**k and I did this, this, this, this and finally this!!”

Plus, I think with the pictures, you will truly see the mess that this was and by the end you will decide I should be rewarded with a gold star sticker and a mojito.

Drumroll please!

The Inside of the Hideaway Cabinet
Staging Area One
Staging Area Two
OMG it’s empty!
You may remember this duck whistle from a previous post. I obviously came and threw it in the closet…
It’s reorganized!!

It took about 2 hours to reorganize it. It has always housed our cold medicine but now I don’t have to grab it while holding stuff in with my other hand before slamming the door shut! Yay.

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June Challenge Day 10: There is a Time and a Place for Everything and There Should Be Snacks too.

Day 10! I am a third of the way through my self-imposed punishment…I mean decluttering challenge.

Today, I decided to work on the top of my fridge. Have I mentioned yet how tiny my kitchen is? We have super limited storage. Weird shaped cabinets. Minimal drawers. We have two IKEA shelve things that we use as storage places. One is for food storage. Mostly its every day use food- cereals, tortilla’s, bread, peanut butter and kids snacks. It’s stuff that we can quickly grab without going to our main pantry in the laundry room. The other holds an array of kitchen gadgets- my much loved KitchenAid mixer (That is trying to die after 14 years of service), our blender, our toaster, a panini press, a crock-pot, a mandolin…

The Mess

The space on top of our fridge holds an assortment of baggies, foil, plastic wrap and my cherished pumpkin candy dish that is basically the size of an actual pumpkin. I love it too much to put it in the garage with the Halloween decorations so it sits up on the fridge year round as a sort of display piece.

I also have cardboard magazine holders that I keep labeled for foil, wax paper and cling wrap. I also have two baskets for baggy storage- one for lunch sized baggies (snack and sandwich size) to quickly grab when I am packing lunches for my kids for school. The other one is for larger size bags (quart and gallons.) I also keep my crock-pot baggies in this basket. I like that it is all in reach.

My husband has been doing 97% of the cooking since quarantine started. He is a foot taller than me and just throws stuff back on top of the fridge all easy-peasy. He doesn’t need the step-stool like me.

Every thing in the right place

I would argue I am not a Type A type of person but writing these clean up blogs the last few days, I definitely like things where I think they go but I also have a super slow burn until it bugs me enough to do something about it.

It took only minutes and I am relieved it is back in order up there again. Now where are my snacks?

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I Have MS. Let’s Get Divorced.

My hubs and I had our 18th dating anniversary on Monday. So, in this post should I refer to him as my boyfriend?! Anyway…

18 years in the scheme of life isn’t that long if you’re lucky enough to make it to your 80’s but 18 years when your not yet 40 (Me.) is a long time. He is very good at math and he told me on my next birthday, I will have been with him longer than I have been without him.

As we inch closer to my MSiversary (my MS anniversary) in July, I start to think back to when I was originally diagnosed with Multiple Sclerosis in 2012. I was in the hospital for 5 days getting steroids. When I came home, I was on a walker and no one knew what the future would bring when it came to walking unassisted ever again or not. I was worried it would get worse and I would end up full time in a wheelchair. I couldn’t do ANYTHING without help. We got intimate in ways I would never have imagined and I am not talking about sexy, fun-time ways. I’m talking about helping me to and from the bathroom. Helping me IN the bathroom. Helping me shower and get dressed. Cutting up my dinner into small pieces because my tremors were really bad in those early days.

I think on the 3rd day of me being an “invalid” I told him he could leave and I wouldn’t blame him. I would sign the divorce papers and he could move on with his life. We would split the kids time with us up 50/50, we’d still stay friends and hopefully in time, he would find someone else to love.

Dude.

He was SUPER pissed I would even say that to him. Like, he was so mad, I honestly thought he might punch a hole in the wall. I’m not sure I had ever seen him so mad and especially not AT ME.

Listen, I know in retrospect it sounds over-dramatic that I would tell him that. We had been married 6ish years by then and together probably close to 10, but I was staring down the barrel of an incurable disease. In my mind, I was doing the KINDEST thing possible by telling the love of my life, that he could leave.

Of course, he stayed and here we are today 18 years and 3 days later. We have been through many ups and downs in our lives but always fighting it together as a team. It’s not always easy. It’s not always without argument but it’s always the two of us, figuring it out.

I know when you are first diagnosed, simple, daily things seem so amplified that you’re just not sure how you are going to get through it. In those moments, find your person so they can carry you when you can’t carry yourself. It doesn’t have to be a significant other. It could be your parent, your sibling, your pastor, your hairdresser. An actual therapist. It could be the person who would help you hide the bodies. It could be the friend that won’t judge if you want to start day drinking at 8 am. The person who will hit you between the eyes with the truth, even if the truth will sting. I encourage you to find at least one person that will help you get through the really overwhelming times. Once you’re on the other side of it, don’t forget to be that person for someone else too. (Chronic Illness Warrior or not!)

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June Challenge Day 9: Electronic Cleaning Counts Too!

I picked a super ridiculously easy cleaning challenge for today because I got 4 hours of sleep last night . (I think insomnia caused by it being a million degrees is a thing!) I have been yawning since 3:30 this afternoon and trying to push through to 7:30 so the kids get ready for bed and I can lay down and hopefully fall asleep earlier than later.

As I have been lounging on the couch, I decided to go through my emails. I unsubscribed to companies I no longer want to get emails from. I went through and trashed a bunch of emails that no longer needed to be in my inbox. I am not a person that keeps none or all my emails. I just get too busy with life and don’t take the time to declutter it.

I decided to go through a chunk of pictures on my phone also to start deleting some pictures.

I am a mom. I take 9000 pictures a day. Or, I have pictures that didn’t focus. Or, pictures that burst shot 12 of the same image. Going through my pictures will take substantially more time but I am going to make an effort to do it more often when I am bored and just aimlessly scrolling social media killing time. Don’t forget to go to your settings after and clear your storage to free up memory on your phone!

IMAGE: A screenshot of my IG posts.

Walk MS is Back in Person Baby!!

WalkMS events are happening all over the US and are returning to in person participation all over the US.

Our Walk was about 3 weeks ago now. It seemed like there were less people walking than usual but it was still well attended. Our site raised over $60,000!

The National MS Society raises funds through WalkMS and BikeMS to put money directly into MS Research and to help patients living with MS get services and help they might not otherwise be able to afford.

This was our 10th year participating. My personal goal is always to raise $3,500 individually and $5,000 as a team. This year we fell a bit short and only raised $4,700 but that $4,700 pushed us past raising $50,000 over the lifetime of our participation so I’d say we still smashed it!!

The ADA List

March is MS Awareness month. Where are our cocktails, or gold stickers if you’re under 21?

I’m sharing the following insider knowledge on the off chance that you’re new to the MS Club or any other Club that requires Disabled Access.

I took my daughter to her first show. It was incredible!

The dude in the Blue Shirt is Dennis. He was the gate keeper to the ADA Section

We went to Anaheim House of Blues to see her saxophone teacher while she was on tour with Andy Grammar.

I have always enjoyed Andy Grammar’s music and was a fan of his before the show. (Fun Fact: During the early days of Covid he held a private virtual concert for people living with MS and I danced around my kitchen to his songs and for about an hour during that really dark time, my heart felt lighter.) His songs are upbeat, have great chorus’s and have positive stories in the lyrics.

As much as we were going for a good concert, I wanted my daughter to see a woman who she is already inspired by and see that you can achieve your dreams with enough hard work, determination and talent. Even if my daughter doesn’t become a professional saxophone player, I am hoping the experience resonates within her soul while she figures out who she wants to be.

We hung out after the show and we’re able to see her teacher for a few minutes

I bought our tickets about 4 weeks before the show. I called the box office and got their voicemail. When it happened again the next day, I left a message. Finally, 3ish days later, I had a missed call and a voicemail from them, “Hi, this is So & So. Sorry our ADA section is filled but ask the night of the show and we’ll see what we can do.” It wasn’t the answer I had hoped for.

Going out as a person who occasionally rocks a walker or a cane, takes a lot of pre-planning as it is. How’s the curb situation? Will the doors be easy to accommodate my walker fitting through. How far away will we have to park? You have to plan ahead and navigate as much as possible but the problem is, it’s NOT ALWAYS POSSIBLE to plan ahead!

We left crazy early to get to the venue. Once there, every person I spoke with that was an employee was extremely helpful. (I filled out an After Visit survey and share all of this, that I am now also sharing with you MSfits, Spoonies and Assorted Cool People.)

Waiting to see if we could get on the ADA List

We were directed to the ADA line and I politely told the man with the clipboard, Dennis, our story. He said the list was full but he’d see what he could do to help us out. He allowed us and another 2 people to join the group of about 20 people that were on the list. Every time he turned someone away, he was apologetic to them. Many people had our same experience, they had called to be put on the ADA list, but it just seems like it filled up really quickly for this show.

So, here is the Insider Knowledge you might not know about: You can buy tickets to an event and then you can call the place and get ADA accommodations to enjoy the show, the game, or the not getting trampled to get seated in the Soak Section. (Pro Tip: You can usually catch more bee’s with honey so be sweet and not a jerk.)

You don’t have to disclose if you use walking aids, or if it’s because your kid has ___________. They can’t ask those questions and you don’t have to supply them with answers. (As I am typing this, I hope there are not people that fake needing the accommodations since you don’t have to give an explanation or “proof”!)

Dennis split the group up and directed my daughter and I to join the group that was heading upstairs. Since we were not on the list, they were trying to find a place to seat us. We politely hung out while they helped everyone first that was on the list. During this 15 minutes we talked to about 3 more staff people and they were all just lovely. There was no room for us upstairs so we got sent back downstairs to Dennis. Dennis asked if I could fold up my walker and if I was able to get on a high chair, I said that I could and he sat us in a different section than everyone else.

We saw a fantastic show. Andy Grammar’s horn section is all female and they all rocked their horns!! I wish I could add a video of my daughters teacher absolutely killing her saxophone solo with a saxophone that is about the same size as her! His whole band added energy to the show. You could also tell he was so excited to be back in So Cal too.

ALL Female Horn Section

I LOVED how unapologetically in LOVE Andy Grammar is with his wife. It was adorable to see and I found myself smiling during certain songs because the lyrics reminded me of my sweet Hubs. He also shared some really powerful messages about loving yourself, seeking help if you need it, staying true to you, etc. We sang along to new and older songs. (I was very relaxed in a group of like, 3000 people, because everyone had to show Vax status or a negative test)

It was so awesome!

We got home after midnight and 5 am came very early the next morning but I am so thankful we got to experience this.

In the words of Andy Grammar, “Here’s to nights you can’t take back. We live hard but we love to laugh…”

If you have questions about ADA accommodations, leave them in the comments and I’ll try to answer them or point you in the right direction.