Closing out 2023

Hello from these two weirdos! Its been a while, so here are some highlights (and not-highlights) from our past year.

Last winter we spent some time in Scottsdale, AZ. It was the first time I had flown since 2020, and it brought some real anxiety as we planned/prepped for the trip. My health is less robust since the last time we flew, and the prep brought up some grief related to that. Only mentioning that here to say that it isn’t easy breezy for me to travel these days. It’s multi-faceted. Thankfully we had a lovely time in AZ! Although – I did come home with a cold and required antibiotics. All that to say, we’re glad we went.

In late May we drove down to FL to spend a few days with some of Josh’s family. Sea turtles! Dolphins! Sharks! Pelicans! It was a great time with family on the beach.

After that trip, I spent my early summer fighting the need for antibiotics. I ended up spending a good portion of June/July either almost on or on orals. There was a puffy lip allergic reaction situation, which was dramatic in the moment… but in the end the allergist says I can still use that medication, which is a a big answer to prayer.

Patten Fam: Mark, Clara (7) Josh, me, Jane (11), Dad, Mom, Thomas (15)

In late July we spent a week at a cottage with my family – mostly right here on the pontoon boat. I was fresh off my month + on orals and SO thankful to not miss this time. It wasn’t relaxing but definitely a lot of fun. Mark’s kids learned kneeboarding behind the pontoon, which was so cute to see unfolding. We played a LOT of games that week.

I have to take a minute to brag about Josh’s professional accomplishments this past year! He wrote grants for four new TRIO programs (like his) for GVSU and got three: this was so noteworthy it was one of two things the president of GVSU brought up at the beginning of the school year in her ‘welcome back’ address. He and his team are responsible for over $1.5 million in grants for this year alone! And no, grant writing is not his whole job. Just a part of it. Ok, proud rant over.

Spending a good chunk of June/July on oral antibiotics and out of the sun led me to discovering watercolor painting – and let me tell you I became obsessed… It was like a switch flipped and I have a whole new hobby. This is close to my whole identity now, just FYI. There is more on Instagram @suzlearnswatercolor if you’re into that whole scene.

No sea turtles but we really enjoyed our Michigan summer.

Josh continues to try and get all 5 of our nieces and nephews into boogie boarding at the Big Lake, and as of this year they’re all hooked. It’s not unusual to look out and see him wrestling two boogie boards as he’s pushing someone to catch a wave.

We bought e-bikes this fall and WOW was that a good idea! I can’t tell you how exciting it is to know that I never have to bike a hill on my own again. It is such a game changer.

Less happily, Josh had hemorrhoid surgery this fall and the recovery has been a lot more prolonged than he expected. He is still not back to normal. He’s been such a trooper but it’s been difficult. I’m thankful to have been healthy (for me) and able to help him in those early days of recovery.

You may have seen my post on Fb/Instagram about our pool closing. Mom and I swam here together for 23.5 years, a really wonderful thing. The pool closed a couple of weeks ago and is it too dramatic to say I’m devastated? These swims in this place have been part of who I am really, and I feel like I am losing the best way to take care of myself. I KNOW I’m being dramatic. But UGGG this is a tough one.

It has now been over a year since I’ve needed IV antibiotics or a hospital stay. I can’t remember the last time that has happened! I’m so thankful for this respite from IVs. It hasn’t been a year of smooth sailing but it’s notable for sure. This year we are thanking God for the health we enjoy and access to the help we need.

Closing out with recent picture of the Brandsen family! Me/Josh, Stephanie/Ryan, Nate/Callum (11)/Kendra, Everly (9), Dad and Mom

I hope you’re also able to celebrate the joys of your past year even as you acknowledge the difficulties. Happy 2024 from me and Josh!

Great Strides 2023

I don’t know if any of you receive emails from the Cystic Fibrosis Foundation about the annual Great Strides fundraising event, but if you do, you might have been more informed about this year’s walk than I was. (I tend to ignore their emails if I’m honest!)

I have my mother-in-law to thank for reminding me about the walk this year- it’s on Saturday May 6! We won’t be there in person but we do always appreciate your generous donations. A sincere Thank You to everyone who is part of the giving community for CF research! Here is the link if you’re interested in “joining my team” or donating.

I don’t have a lot to say about my health at the moment, even though I do get asked. It is fragile, and we are still operating very carefully in public like many people did during the early days of Covid. Josh and I thankfully have not had Covid yet, but I have experienced several difficult colds in the past year+ that have led to decreased lung function. So, day to day I’d probably tell you I’m “fine!”, but overall I am easily out of breath and I have slim margins for illness.

I’m thankful to be doing as well as I am! In fact, this winter we traveled to Scottsdale for a vacation, my first flight since 2019. These pictures are from that beautiful week in the sun. I have more to say about that experience…

I’ll leave it there for now. Thank you again for your love and support!

Great Strides 2022

I just opened up my wordpress and discovered a draft called “Turning 40” from last November (when I turned 40). It didn’t have any words yet, but it had a bunch of pictures from a trip Josh and I took to Lake Superior last September. So blogging is going well?

Welp, please enjoy these scenes from last fall – but the real reason I’m here today is because this weekend is the annual Great Strides fundraiser for the Cystic Fibrosis Foundation. Josh and I won’t be going in person but I’d still love to raise some money for them, and so many of you faithfully give to this cause. Maybe you can this year too!

It’s been a while since I’ve updated the internet on my health status. It’s not like it’s a secret, but sometimes I feel like a broken wheel with “I’m sick again” or “I’m feeling fine”. Living with CF takes a lot of my energy and then describing it to others, something I do want to do, can be draining in a different way. I bet you can understand that. I bet you’ve had seasons of feeling drained in recent history too. Just a hunch!

(That’s a pasty in the above picture)

Thank you for being here, for praying for my health, for caring how things are going for me and Josh and my family overall. Thank you for donating to Great Strides and participating in making life better for CF patients in the future! I was in the hospital last month and the doctors were telling me about an antibiotic that is being developed in the pipeline; there is always something to hope for. CF research is incredibly active.

If you want to join our walk team this year or donate some cash, please do! Here’s the link.

I’ll leave it at that for now and let the UP memories do the rest of the talking 🙂

Aaaand for those (Mom) who made it this far, I’ll just go ahead and post the whole video, why not?

Great Strides 2021 & an Update

The annual CF Foundation fundraiser that we normally attend is coming up in 5 days (it’s virtual this year). I wanted to mention it because some of you faithfully participate every year. You even covered for me last year, when I dropped the ball entirely.

As you may have seen in my blog post before this one (end of 2020), the research done by the CF Foundation is life-changing work. This has been dramatically true in recent history with the work that led up to Trikafta. It’s the reason that we give and ask you to give; thank you in advance for being so generous!

Here is the link to donate or join our virtual walk team.

My other CF-related news is that our beloved doctor is retiring at the end of June. My parents took my brother Mark and I to Cleveland, OH for care all through childhood, and we changed to Dr. Simon at U of M in Ann Arbor for adult care sometime in the late 1990’s. Along with being the director of the adult CF clinic at U of M and other leadership roles in his field, he has cared for us and been a solid part of our foundation for over half of my life. This is a tough goodbye, although of course we are happy for him and his family.

For those who are interested, here is an interview Dr. Simon recently did with another one of his patients. In it he discusses how he got his start in CF care and some of the milestone changes in the field he’s seen in the past 40+ years. I’m impressed with the interviewer’s composure, as I’ve done nothing but cry in his face! Let me know if you’d rather read the interview, and I’ll forward you the pdf.

Of course, life moves forward, and I am trying my best to prepare for learning to trust someone new. I’m trusting that God will carry me through this time of transition.

Closing Out 2020

Hi! It’s me!

We’re nearing the end of 2020 and like many of you, I’m trying to figure out a good way to give you an update on our lives. So, this got long – like, obnoxiously long. FYI this post is skewed toward health updates related to my Cystic Fibrosis, since I am asked frequently about that these days.

As challenging as this year has been for all of us, 2019 was more difficult for me. I was sick early in the spring and could not gain back the ground I lost. We decided to take a spring break trip anyway and went for a relaxing trip to the FL Keys and Miami. I made a little video from that trip and will add it here.

(Here is a link to the video)

That trip ended abruptly with a CF-related incident that eventually led into a second round of illness in late spring, which included a hospital stay. 2019 was a hard year for me. I didn’t recover my lung function and was out of breath more easily than ever. My health felt fragile. Doing regular things was winding me and wearing me out. I was constantly mentally on the front lines, which is exhausting.

We mostly stayed home through the summer, but we did spend a night at Silver Lake near Josh’s family. If you’re a Brandsen you might enjoy this video from that trip:

(Here is a link to the video)

In September we spent a weekend in Chicago for Josh’s work. I typically bop around town during his conferences, but this time I looked for ways to avoid stairs and took elevators, I used Uber instead of walking distances, etc. My limitations were a constant presence, but I was grateful to travel again without any drama.

And here is where everything changes! Last fall, a new and groundbreaking medication was approved for people with CF like me and my brother Mark. I posted about it on Facebook/Instagram on Dec 3 2019 and will add that here in case you didn’t see it.

Here we are a year later and I still struggle to put this experience into words. I cannot emphasize enough how thankful I am that it came when it did. I needed it. Many CF patients have had dramatic increases in lung function, which makes me cry every time I think about it. The future!!

My lung function is just less than 40% of normal, and it really wasn’t improved significantly by the medication. Our doctor warned me ahead of time that with the level of damage I have in my lungs, I shouldn’t expect a big bounce. So I didn’t. I was unprepared emotionally for feeling significantly better! The daily burden of CF symptoms really did lift and has stayed lifted. Everything – like, every little thing, became easier. Oh how I wish I could put words to this.

As a person with CF, I have been learning more and more about how to be unwell. To cope with it, and to do my best with what I have. It is hard, and it is a lot of work. This is the direction a lot of my energy goes in – and then suddenly, there was a MASSIVE 180. It rocked me to my core! To just feel better – with no work attached. No effort whatsoever. Instant, sustained help. No downsides. There isn’t a way to fully describe it. I’d ask Mark how he was doing and he would say something like “Good! Feeling really good!” and I would just be going, “Where’s YOUR emotional breakdown??”

We see this new treatment as an absolute gift from God using the skills, determination, and heart of the medical community and researchers. A huge feat with lasting effects. If you have ever donated to CF research, know that I have cried many a tear of gratitude for you. It is such an exciting time to be alive!

Needless to say, we started 2020 with energy and optimism. Knowing what we know now, I am all the more grateful for our good news at the end of 2019. Here I am with Mark in February. (He had just turned 40, I was 38)

Sadly, soon after I started feeling so much better, our kitty got sick. I spent lots of time on our bedroom floor trying to get her to come out from under the bed to eat. She died in mid-February, and we still miss her. I know a lot of you know this sadness! Pets, man. 💔

OKAY MARCH. (I told you this was going to be long!)

So, on March 9, 2020 I got the flu. I ended up spending a week in the hospital. Here are a couple of posts from that time:

Do it Again by Elevation Worship

After hospitalization, I finished up IV antibiotics at home and spent the spring quarantined like the rest of you, recovering. It felt like a big moment in several ways when Josh took me to the greenhouse. My first time in public! Doing a beloved spring activity!

Through the summer we spent what time we could with family outdoors at parks, in backyards, at the lake, etc. We spent lots of time at the Brandsens’ pool. I used it for my swim workouts, a welcome variety from my treadmill.

I am still working part-time for my parents’ jewelry studio Jeweler’s Workshop, and since March have almost exclusively worked from home. It’s been a tough year for small businesses, and I’m proud of my parents for sticking it out as well as they have!

June and early July are normally Josh’s busiest time of year for work – his high school students live on campus at GVSU and take summer classes for 5 weeks and then take a trip together. This year there was no trip, no campus, and everything was done virtually – even the formal award banquet. He and his team pulled off quite the feat, I am so proud of them! He is still working mostly from home, and I’m happy to say his home office (the back porch) doesn’t look like this anymore.

Once the summer program was done we had more time for the beach. One week, we were at the lake three out of five days!

Since March, my quarterly doctor appointments have been done virtually. Earlier this summer I was sent a little device that I can use to do pulmonary function tests. It’s not quite the same as in the office (duh), but through it my doctor believes that I didn’t lose any ground from the flu this spring. A true gift!!

We’ve been working a lot on a back porch renovation this summer/fall. Actually, it started in 2019 and has been a long, difficult journey. But this summer we’ve made good progress and now we’re just doing the finishing touches. We made sure to take breaks from painting for bike rides, of course.

This was the night before the new carpet was installed. I’ll have to post some before/afters of the porch sometime.

A couple of months ago Josh’s cousin Kylee came and cut my hair in our backyard! I’m putting it here because it was one of those Pandemic moments I never would have dreamed up. I felt like a whole new person, and can’t wait to do it again in the spring.

Finishing off with an accidental selfie I took the other day when I was doing some photos for the shop. Do you follow Jeweler’s Workshop on Facebook or Instagram? It’s where I spend most of my work time these days. Small businesses like ours really benefit from your participation on social media, especially when you share us with your friends! Come join and tell me what I can do to improve. And then I’ll try to sell you something pretty.

It’s been a tumultuous year for us all. There are so many more things I didn’t even touch on today but I’m going to end for now. I want to share this line from a poem that is saved on my phone:

“Take your place in the flow of grace”

May we all get the rest/do the work required to take our place in the flow of grace as we move into next year.

Hello From the Other Side

I’ve been done with all of my antibiotics now for 5 days, so why not do a little update? In general it’s hard for me to know how much to talk about when it comes to Cystic Fibrosis because really it’s an every day thing. But it isn’t every THING every day. I don’t want people to only hear from me when I’m in the trenches with a lung infection but that seems to be where we are with this blog for now. So, thank you for allowing imperfect glimpses, and thank you for caring and praying for me (us) so thoughtfully when we need it most.

Coming off these intense meds is always a physical adjustment as systems regulate and I work on stamina and strength. It is also mental because in “patient mode” I’m constantly assessing my body for symptoms. Hopefully there is less of that and more awareness of the world outside my body in regular life. Also, in the past year+, anxiety has come into the mix at times when things are hard. Not often, but enough to know what it is and how much I don’t want it.

Thankfully this past week has been on track. I am not back to my “baseline” but am hoping to be ready to hit the pool this coming week and get back into more normal routines. I haven’t been back to the pool yet because early mornings feel so *early* and swimming is hard enough when I feel strong. When I can’t breathe (even at my best it’s not great) and my strength isn’t there, swimming is misery. I like to get some level of exercise tolerance back first so I’m working on that. My appetite is good and my weight is good, two things I’d never have guessed while I was in the hospital. Yay!

Josh is in his busiest season at work, where his high school students live on campus at GVSU and take summer classes, so he’s home less. It wasn’t a great time of year for me to be sick, and we’re so glad to be on the mend.

My short term goals are to be feeling well enough to have nieces and nephews over in the morning to play (it’s been so long) and get back to my regular workouts in the pool. Sounds pretty reasonable, right?

Thank you again for loving on us. Cards, flowers, meals, games, messages, prayers, pj pants when I ran out of clean ones in the hospital, all of it. You’re like, really nice. Love you, mean it!

Change of Plans

Hi everyone,

We’ve changed our plans for the Great Strides walk this coming weekend. We are not going to physically have a team there this year. I’ve been sick/on oral antibiotics for a couple of weeks and we just haven’t had the “oomph” to honestly put any time or effort into the walk.

Thank you for caring about this cause, and of course donations are still appreciated! Here is the link to my page. 

 

 

It’s Been a While…

Hi everybody. I’m fresh off (okay almost a month off) a sunny trip in the Florida Keys/Miami, swinging around a pole to remind you of the Cystic Fibrosis Foundation’s Great Strides walk coming up. I’m pretty late posting about it here (maybe you saw it on Facebook already?) but wanted to cover all the bases.

I appreciate the generosity of so many of you who give to this cause year after year. The research the CFF funds has brought new treatments to our lives over the years, and the next one in the pipeline has our doctor very excited. I hope you’re not offended with my tardiness in getting the date/time info for the walk out there – the truth is sometimes I have nothing in me for *more* CF. It’s been a long few months, starting with being sick in February, and I’m still not back to my baseline. I’m back on orals at the moment and praying that they will give me the boost I’ve been longing for. A work in progress, as always!

Anyway, here is the link to donate or join our team for the walk – we’d love to see you there! It’s Saturday May 18th at 11:00 at Millennium Park. 

 

 

The Eagles’ Nest and The CF Walk

Tags

Bald Eagle, CF, Cystic Fibrosis, Eagle, Eagle Nest, Grand Rapids, Great Strides, Millennium Park

If you follow my Instagram account (@suzannebrandsen) you probably know our recent obsession with this bald eagles’ nest in our area. Rumor has it that there are 2 babies and probably two parents, so obviously we’ve activated total NatGeo fan mode. We stopped by the nest with my parents and Mark and Jess and the kids on Mother’s Day and were treated to a full show – one of the eagles circled high over the nest and then came to land on the tree and hang out. It was so exciting to see up close!

Anyway, if you’re local and need directions to see for yourself just let me know. OR just come to the CF Great Strides walk this Saturday (remember, it’s at NOON this year) because it’s less than a mile away! Who knows, maybe you’ll be able to see the nest on the walk! The suspense is killing me! (Seriously, I’m not really keeping my cool very well with this one.)

The point is, see you Saturday? Here’s all the info on how to donate and/or join our walk team.

 

Some Happy Updates

Tags

CF, CFF, Cystic Fibrosis, Great Strides

Hi! Lots of news to share today, so why not dump it all here?

First, many of you are faithful supporters of the annual Cystic Fibrosis Foundation’s Great Strides walk, either in person or by donating. Thank you for that! This year’s walk is coming right up and we’d love to have you back. It is Saturday, May 19th with registration at 11 and the walk at noon. The location is still Millennium Park Meadows Pavillion. Here’s a link to my page where you could sign up to join us or make a donation. Thank you in advance!

On that note, your research money has contributed to a new medication that (my brother) Mark and I have recently started. It is a twice-a-day pill called Symdeko, and it’s a big deal. It is the second medication that we’ve had that treats the disease and not the symptoms, which is huge and groundbreaking as far as treatments go. The first one, Orkambi, didn’t work out for me. It had negative side effects that took away any benefit for me. This one is kind of like Orkambi minus the negatives, and I felt a difference as soon as I started taking it. Mostly I noticed things like improvement in my swim and being less out of breath going up stairs. It’s not changing my life in a big way BUT the fact that I can feel it helping me is a new, foreign, WELCOME feeling. We are so grateful for this new treatment! My doctor describes the next one coming (probably a couple/few years out) as hugely impactful, so keep those donations and prayers coming!

I have other happy news to share about Mark AND Jess. Mark was very sick this winter with the flu and then pneumonia, and he spent significant time in the hospital. A couple of weeks ago he had a follow-up with our doctor and he has recovered to where he was before getting sick! If only we could have seen April in January. Ya know?

And Jess, who has struggled with migraines and other health issues for the past two years+, is feeling much better and has just been cleared by her migraine specialist to return to work. Her boss has been hoping to hire her back and HELD HER JOB for her as an oncology social worker. She is working 20 hours a week for now as she acclimates. She is thrilled to back in her old position and has been getting lots of affirmation from co-workers. Also, “Baby” Clara just turned TWO last week. How?!

For myself, I’ve had a good spring. Of course I’d love to breathe better but I’m holding steady right now and I’ll take it! Josh and I didn’t do any traveling this spring and it’s starting to sound like a good idea. Right now we’re dealing with a robin who eeearly every morning bashes into our bedroom window, waking us up before we’re okay with it. And we’re still so happy it’s spring! Thank you for those who loved on our family this past winter – and beyond – as we’ve done some hard living. We are so grateful to God to have happy news to share!