MSfit Momma

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.

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.

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.

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.

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.)

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.)

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.

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.

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.

Decision Time: COVID-19 Booster (Additional) Shot & MS

I just emailed my doctor about getting a booster shot since it just was authorized by the FDA last week for people with compromised immune systems.

I live with MS and am immunocompromised because I take Kesimpta, a once a month shot that depletes the B cells in my immune system. B cells are what fight viruses in your body. Once a month, I give myself a shot that targets and “blows up” the B cells in my immune system. They start to regrow and then it’s time for my monthly shot again and BAM the medicine goes in and blows up any new B cells that had started to regrow.

At the start of the COVID-19 pandemic, my neurologist and I discussed how to proceed. He felt pretty confident the vaccine would be available to immunocompromised people sometime between March to May (at the time, he was just estimating based on what he was seeing and hearing). We decided I would stop my Kesimpta treatment in February 2021 so that my immune system had time to rebound and start re-growing so that when the vaccine did become available to me, I would be in a position to get it immediately. By stopping my Kesimpta injection, there was a possibility that my MS could start progressing. I decided it was worth the risk, that even if my MS might get worse, I’d be safe from the pandemic.

My husband and I got vaccinated in April 2021. I cannot articulate the relief it brought me after hiding inside for over a year.

In July, I heard from a lady who has MS that she had no antibodies to COVID-19, even after fighting and surviving it and being vaccinated afterwards. I asked for an antibody test (I have heard that it’s not a full picture of your immunity, but my neurologist said it’s the only test available to measure it at all). My antibody test showed I had little to no antibody response to the vaccine.

I get nervous being out around people right now, especially with the Delta variant being so aggressive. I get anxiety for myself and my kids. I look at people and wonder if they have been vaccinated. Do they look at COVID like it is a threat? Are my kids keeping their masks on correctly at school? It’s so hot in California right now, I feel suffocated when I have them on sometimes.

I feel like I only have two options right now:

Once again pause my MS treatment for 4-6 weeks so that my immune system rebounds enough that I can safely get the booster shot and hope that it gives me more immunity this time.
Hide inside until this is over.

The stress and anxiety I felt last year when the world shut down was intense. My family lost someone to COVID that was very important to us. The fear I have of getting COVID is magnified – I have ended up hospitalized with pneumonia from what started as a cold my kids brought home from school… TWICE! I imagine with COVID, there is a very real chance I might not be able to fight it off and could die. It’s exhausting to hear people still call it a hoax after all this time.

I have no easy choices in this situation. This is how it is living with a chronic, incurable disease. I have to make endless choices every day that affect my life in big and small ways.

Sometimes they’re easy choices, like pizza or Chinese takeout? Lately, it’s been about who I might be around; do they wear masks? What’s their take on COVID? Are they vaccinated? Other times it’s really horrible choices like, is it worth possible disease progression or even possibly death?

I already feel like I miss out on my life somedays because I live with MS. It’s really heavy to deal with the constant fatigue, the physical limitations and the lack of energy on a daily basis. The give and take of it all when living with a chronic illness.
On top of it all, I don’t want to die from COVID.

I have an absurd level of mental exhaustion from the last year and a half. I have been trying to stay informed but not freak out too much. I have been attempting to keep coronavirus away from me and my family. I have been keeping an eye on my kid’s mental health from the trauma of living though this pandemic. I have been trying to move the constant resentment of having to live with MS to the back of my mind. I really hate that I have to rely on other people to make good, healthy choices in dealing with COVID. I don’t want to have done all of these mental bobs and weaves only to end up dying from stupid COVID because I couldn’t outrun it or outsmart it.

I heard back from my doctor. She said to get the additional shot on Sept. 1 — now my immune system has some time to grow some B cells.

I am a Liar

I originally posted this to my Facebook page two years ago on World MS Day

Let’s talk about how I am a Liar on #worldmsday As we all know, I have MS (Multiple Sclerosis) a debilitating neurological condition. I’ve been diagnosed 7 years now in July. I am sunny, optimistic and always cracking jokes about my disease to cover up how I truly feel because people don’t always want to hear about how exhausted you are. I go to Loma Linda for various doctors appointments on average twice a week. I get exceptional care. I’m told to “listen to my body” and slow down. Which is probably the ABSOLUTE hardest thing for me to actually do because I have to two kids. I live in constant fear of missing out or not taking the time to adventure because someday I may end up in a wheelchair full time. (The average MS patient doesn’t end up in one- that is an outdated myth but I already use walking devices which give me a higher probability of ending up with one.) I try to take care of whatever needs to be done first thing in the morning because by noon, I’m starting to really drag around and need a nap. I live in a state of guilt for my kids, husband, family, myself- I slow us down in a variety of ways. If I push myself, I pay for it for days. Every little movement is paid for in energy costs of myself – dishes, laundry, grocery shopping, dental appointments, making dinner- all require energy calculations & a payment of energy. I have to take rest breaks after the most mundane things- showers, walking from the house to the car in the driveway, hanging out in the backyard, getting up out of bed. When I use up all my energy, I literally feel my body get heavy and slow down like I am a giant slug. I can ask for help. I have the hugest tribe of people that would help me in an instant. I don’t though. If I did, it would be admitting defeat to myself.

I am a liar.

By not asking for help, I feel like I maintain a slight hold over my disease, screw you MS. If I do, I feel guilty and weak. No one makes me feel this way. I bring it all on myself. It’s hard to live in a grey area. I don’t share this for pity. I share it because I am a really great actress of portraying I am fine when I am not.

I am a liar.

I can’t be honest about how shitty I feel some days. How guilty I constantly feel. I am trying to calm the sea of self-induced madness inside me. I’m trying to find a balance to the self hate ableism.

As I try to figure it out, I’ll continue to lie about how good I am feeling when you ask me because

I am a liar.

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.

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.

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.”

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.

MS Awareness Week (March 7-13 2021)

March is MS Awareness month for the diagnosis of Multiple Sclerosis. Multiple Sclerosis is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Multiple Sclerosis is a chronic condition. There is no cure. 1 million people live with MS in the United States. The Time Is Now to End MS.

Every year more and more is learned about MS. The first treatment available to treat MS was in 1993. Now there are 20 available DMDs (Disease Modifying Drugs) with another hopefully to be approved by the end of 2021. DMD’s do not cure MS. The medicines can be a shot injection, a pill or an infusion. There goal is to freeze whatever symptoms you have and prevent you from getting more or new symptoms.

Every year more people get involved in the movement to end Multiple Sclerosis but we must do more.

ID: A Picture of a blue and orange wreath of a blue background with a sign that says, “In this family no one fights alone”

Social Media has so many informative, fun people you can follow to learn from people living with MS. There are pages and groups you can follow to ask questions. You can find people to follow by searching hashtags on Instagram and Facebook. Some of the specific MS hashtags that people use are #ThisIsMS , #LivingWithMS , #MSStrong , #MSSociety You can also search by the medication you take. There are podcasts you can listen to to hear from doctors and scientists on the latest MS news. You also will hear from real people living with MS. The podcast I like the best is RealTalk MS.

The National MS Society has patient navigators you can call to find out about programs in your area. They can connect you with doctors and hospitals that specialize in MS in your area. They host support groups, classes and retreats for people living with MS. You can also join the movement to be a MS Activist and take your concerns straight to legislators and helping to propel issues that the MS Society supports. You can also get moving to help fundraise for events like Walk MS or Bike MS. These events help raise crucial funds for research, grants and for people living with MS.

ID: A picture of Sarah standing by a Walk MS sign. Her blue walker is in front of her

If you feel comfortable, you can share your personal story of how MS has affected you or a loved one.

Start small.

Find the way that feels most comfortable for you to share: a painting, a conversation with someone over a cup of coffee, or sharing on your social media pages.

MS doesn’t slow down so neither can we. I hope you will join the MS Movement. Together We’re Stronger!

Kesimpta (Originally Posted December 2020)

In July, my neurologist told me to look into a new injectable called Kesimpta. It would be approved in September by the FDA. He was excited, as he said it was very similar to the infusion of Ocrevus but in a shot once a month.

I was like, “Ummm, ok sure, but I’m not going back on injections. Plus I am still pretty scared of needles.” He said that was fine, it was my choice, but he really liked the data coming out behind this new medication and he had been following the trial since it was first started.

I’ve had Multiple Sclerosis for a little over 8 years now. I started on Copaxone. It was the only medication my private insurance would start me on in 2012, even though my Multiple Sclerosis was presenting as pretty serious. On Copaxone, I got huge, burning welts but worst of all my M.S. continued to progress.

After 6 months, I was switched to Avonex. I hated that injector. I had such bad hand strength that my hubs had to administer the shot for me. It hurt very bad when the needle went into my skin. I had less side effects from the shots themselves, but again, I had more disease progression. Next I went to Gilenya. I was so excited to finally be able to take a pill. Yes, one more pill in my daily intake, but no more shots! Gilenya worked great until it suddenly didn’t and I was admitted to the hospital with no feeling from my collarbone’s to my toes. By 2018, my disease had progressed into my spine too. I was started on Ocrevus in October and it has worked great for 2 years. Yes, I have to go to the infusion center twice a year for about 6 hours but it’s not really an issue. I always slept through my infusion. (Or, watch HGTV. Who else only watches that channel at hospitals??)

I had another appointment with my neurologist in September. We discussed Kesimpta again. I told him I really just felt like I wanted to stay on Ocrevus. It was working well. It was no big deal twice a year. It wasn’t a needle.

He told me whatever I wanted to do was fine and he would support it but he said in a Pandemic, he would feel better from a medical standpoint, if I was on a treatment that would only blow up my immune system a month or so at a time and not for six months at a time. He also said, if I switched to Kesimpta, he would feel better about me leaving the house to go back out in society.

I am an outgoing person. I need adult interaction. After 6 months confined to the safety of my house per his advice, this was a big, juicy carrot he was dangling. So I said, let’s compromise; I make the switch to Kesimpta with the knowledge that once the pandemic ends, I’d be switched back to Ocrevus. He agreed.

I want to be very clear. I trust my neurologist. He is a MS Specialist. I truly feel like he is a player on my team, not the coach.

ID: A color picture of a Kesimpta training manual

He filled out the paperwork while we finished up my telehealth appointment. The next day, I was contacted by my personal support specialist (Customer Service) from Novartis (the drug manufacturer). She explained that they would submit everything to my insurance and would follow up in the next few days regarding my copay and setting up the delivery with the specialty pharmacy. Again, it was super fast. She called the next day to let me know everything was good to go. She said the specialty pharmacy would be in touch about my delivery and my personal coordinator (Nurse Practitioner Representative) would be in touch to help me as I started on the drug.

It got setup to be delivered very quickly. My personal coordinator called and introduced herself. I didn’t have very many questions for her. She sent out a training pen and instructions.

The training pen was very helpful. This is injector is the easiest one I have ever used. You simply push the injector into your arm, thigh or belly. You wait until you hear a click and you are done. It takes about 6 seconds from start to finish. It’s not even enough time to say “Ow!”

ID: A color picture of a Kesimpta training pen

After my Ocrevus infusion, I would have a headache the next day as my only side effect. Nothing that a pain reliever couldn’t solve. (I will say that at about month 4 after my infusion, I would start feeling more fatigued and cognitive issues would be more present. It would be 2 months until I could get my infusion. Some patients refer to this time on Ocrevus as “Crap Gap.”)

I’ve had 2 doses now of Kesimpta. I have no side effects at all. So far, I haven’t felt anything that I would compare as Crap Gap. If things continue like this, I don’t for see me going back to Ocrevus. Kesimpta it just so simple and easy!

Actually, the only “complaint” I have about Kesimpta, is how often (my very nice and knowledgeable), personal coordinator calls to check in on me. I am at home with 2 kids in school and it’s not always easy to pick up her calls. I do think this service would be very helpful to newly diagnosed patients who have a ton of questions. The last time she called, I told her that I have her number saved and will call if I have a question. I really do appreciate this level of customer service, I just don’t personally have a need for it at this time.

So here’s to hoping Kesimpta, works it magic and my disease doesn’t progress!

ID: A picture of Sarah injecting her shot

It’s been too long (This post was lost in cyberspace. I originally posted it in November)

I don’t even know where to start this post. I haven’t been in the mindset to blog for a few different reasons.

Pandemic Problems.
People I love dying.
School at home (Not to be confused with Home Schooling. I leave my kids learning up to the professionals.)

I try to use this blog to share about my life living with MS. BUT fair warning, I think this post will be more of a Mind Dump because it’s been so long since I wrote anything at all.

Hmm, so lets start with MS related news:

I started a new DMD on November 1st. It’s called Kesimpta. It was FDA approved September 1, 2020. It’s an injection once a month. My neurologist brought it up, probably back in June. He said it’s very similar to Ocrevus which has been a great medicine for me. (I don’t mind the infusion twice a year. I usually just sleep through it.) My neurologist was very worried about my immune system being out of order for 6 months at a time during a pandemic. So we discussed it and I thought about it.

As time progressed and we got closer to my October infusion date with no Covid end in sight, I called his office and we set me up on Kesimpta. (I’ll do a full blog post on Kesimpta soon.) With me switching to Kesimpta, he also gave me the green light to leave my house. That was awesome for my psyche!! The first day I went to Target, I only spent $24 (after 7 months indoors!!)

I think I appreciate the green light more so then actually wanting to go be out around people. I get very stressed out if I am in an aisle with too many people or if lines are long and people aren’t staying 6 feet apart. I still feel that I can only stay as safe as other people take it. Since Covid rates are skyrocketing again in California, we’ve gone back to the Hubs doing 99% of the out of house errands.

What else? Oh the Dodgers won the World Series! That was so exciting to see with our kids. (Same with the presidential election!)

Everything else I start typing either needs it’s own post or feels to personal to share right now.