Update on Jess

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Edit: SCROLL TO END OF POST FOR UPDATE..

Posting a blurry picture of a hospital bed because I don’t know what two years of headaches really looks or feels like…

So here it is, after almost two years of suffering from daily migraines, this week finds my sister-in-law Jess in the hospital for treatment. She has had a long road of many tests and treatments and life changes brought about by these headaches, and this is the next step in the search for healing. The goal is to break the cycle and get 24 hours pain-free, which will also hopefully shock her system and set a new course away from pain. This morning while I was there she said her pain was at a “9” out of “10” so the meds haven’t kicked in yet. The doctor said they may not until her fourth day, two days from now.

(I should probably also say that Jess isn’t allowed to have visitors – so if you want to send something her way I can help you out with that)

I’m letting you know because this is a really good week to be praying for Mark and Jess and their family. As you can imagine, with 3 little ones this is a big undertaking and we desperately hope it will be helpful to Jess. ALSO. Mark (has cystic fibrosis) is not feeling well. It is very possible that he is looking at a course of IV antibiotics which is its own kind of circus.

It is likely that the next few weeks at their house are going to be tough. Thank you in advance for praying for and loving on our family!

BTW here’s a shot of us from the other night – photo taken by special visitors from out of town, Uncle Dale and Aunt Juanita!

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Two words: tent dress. Two more: bad choice. I’ll leave you on that note. Hehe!

Okay, here’s an update from 8/22/2017: Jess was sent home yesterday after a rough weekend. The bottom line is that the treatment wasn’t effective enough, which is a disappointment. Over the weekend her picc line ended up having to be pulled and she had a break from meds which did complicate things but I don’t think it would’ve changed the ultimate decision by the doctor. Her next step is an appointment with her migraine specialist this coming Monday. Mark is still on orals, still feeling sick, and I believe the kids might be back home tonight (my parents have had them) but we’ll see. Thank you for your prayers, keep them coming! This is not a one-week thing in Jess’s world, it is ongoing.

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Some Summer Stuff

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Patten Beach Day July 2017

Happy summer you guys! I’m just popping in quick because the to-do list is a mile long today. Josh and I are leaving SUPER early in the morning with 40 of his students (and 3 other chaperones) for New York City! Pray for us. Heh.

Actually I’m really excited – they take a trip every summer and they do so much fun stuff. Last year was the first year I went along (Disney World, I wrote about it here) and the kids were so fun to be with. I’m really looking forward to it!

My big role on the trip is to make a video, so I’ve been doing a little practicing. This past weekend we spent the afternoon at the beach with my family and Josh’s brother Nate to celebrate Josh’s birthday, and I made a fun little video just for kicks. It’s got windsurfing, wave jumping, and Clara’s obsession with the camera. Check it out!

Video link here.

 

The Walk

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Another Great Strides Walk is in the books, you guys! Thanks so much to everyone who gave $$$ and time to raising money this year. Our team raised a whopping $2,765! I’m so humbled by your generosity each year and you inspire me to give big too. So thank you! I didn’t post an update right away because I actually started IV antibiotics right after the walk. It had been 15 months (!!!) since I’d done IV’s and my lungs just needed a boost.

I’ve been done with all of the meds now for just over a week and things are looking up. Truthfully, I was hoping for more of a boost than I seem to have at present, but I think that will probably always be true. I do feel as though it brought me back to my “baseline”, whatever that is. Ha! CF can be a hard thing to figure out.

I’m slowly crawing out of the “IV hole” and getting back into more normal routines. For example, I hardly spend ANY time in the kitchen when I’m sick. I gag easily and my appetite is always at risk on meds, and Josh is so SO good to me. He does it all! It takes some adjusting on the other end of meds.

Anyway, just thought I’d pop in and let you know where things are. Thank you again for your support of the Great Strides Walk!

(In case you’re wondering, I’m not in the picture of our team at the walk because I don’t actually do the walk. I have bacteria in my lungs that I don’t want to share with other people with CF, and I def don’t want theirs! So I join our team afterwards, but this picture was taken before it started.)

 

Some News

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I had a checkup with my CF doctor recently and he had some good news about research that I want to share with you today!

The appointment itself could have gone better – I ended up on oral antibiotics. It’s been two weeks now (out of 3) and I’m seeing some improvement, so I’m grateful for that. Weirdly, my voice has been a topic of conversation with my doctor lately. He even had me be seen by an ENT, a first for me. I’ve been taking an inhaler for a couple of years now that brings a couple of fun side effects with it. One is a monthly case of thrush, which isn’t a big deal. The other (at least we wonder if it is caused by the inhaler? Hard to tell..) is that I’ve been hoarse and losing my voice a lot. People often assume I have a cold (I don’t). The only information we got from the ENT is that I have some scarring on my larynx that can’t be reversed. Hm.

Also my lung function has been low for quite a while now, lower than anyone is comfortable with. Both my doctor and I like to think that it can come up some. There is a cyclic component to CF that does bring hope of improvement, but we can never know for sure. Anyway these things led to the decision to do antibiotics and I have felt improvement in both areas, which I am grateful for! Not sure how much “room” I have gained in my lungs but even by reducing congestion I feel relief. So as always we are grateful for your prayers in regards to these lungs of mine!

ANYWAY on to the good news! To be honest I don’t keep up with CF news much. We spend more energy on living life despite CF, but we are grateful to all who work daily on our behalf. So you may know this already but it was news to us. There is a new drug coming down the pipeline that is scheduled for release in the next 6-7 months, and it sounds like an “improved version” of the one that came out two years ago, which I blogged about here. The last one did NOT work out for me, although I think my brother Mark still takes it. I got pretty sick soon after I started it and we think that I was one of the people where, instead of helping me some, it hurt me some. Or at the least, I just didn’t benefit from it. The new medication that is coming is said to be like the Orkambi, but minus the negative side-effects. I’m listening!

Basically two years ago Orkambi changed the starting point for research, and many of the new medications coming down the pipeline are springing off that platform. It is exciting stuff! Do you see where we’re going here? …..

That’s riiiiiight, our Great Strides walk is coming up NEXT SATURDAY and you have the opportunity to be a part of this exciting moment in CF research! If you stuck it out this long through a very wordy post, I thank you.. And, here’s the link to join my team! Or just donate! 

Thank you for giving to this cause, and for the love and support you give our family. Sending the love right on back!

Great Strides 2017

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If there’s one thing we can count on me for, it is for being LATE in bringing up the Great Strides walk every spring. Every year! They start in on me in December, and I’m all, “No way! I’m not bothering anyone until a month beforehand because I like having friends.” And then suddenly it’s less than a month away and I have no idea how this happened. Every year.

Soo, thank you for being gracious with me once again as I ask you to consider joining us at our walk on May 6th at Millennium Park! (Registration at 9, walk at 10)

We are so grateful for your generosity to this cause in the past and hey, why stop now? (UGH AWKWARD) (this never gets easier) (probably why I put it off every year) … Of course if you’re unable to join us at the walk but would still like to donate, you can do that here! Truly, as someone who has reaped the rewards of the CF Foundation’s research and who is counting on more of it, I do thank you for giving to them.

OKAY we woke the blog up from winter slumber. I guess that means I’ll be back soon with other stuff to post about, including where the photo (above) was taken.

Let me know if you have any questions about the walk!

Liquid Potassium? Ew.

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You will never meet anyone more excited about disposing of expired meds than I am. You may as well not even try, you guys! And THIS one here has me feeling extra happy. It’s been a while (over a year) since I’ve updated you on my health, and I’m starting to think it’s never going to be a good time, I’ll never know what exactly to say, and I may as well just put SOMETHING out there. So here goes!

Living with CF in 2016 started out terribly. I got sick right before the holidays at the end of 2015 and was having a hard time breathing. I don’t have much margin for “error” and this was a big dive. I did a round of steroids and IV antibiotics over the holidays (so not recommended). It helped some but not enough, and I needed a second round of IV antibiotics in January 2016. The one my doctor most wanted to use (based on culture results) is the ONLY antibiotic I’m allergic to. This meant I had to be admitted to the hospital in Ann Arbor for a couple of days to be desensitized to the med and make sure I was stabilized. We never knew desensitization was an option, and were thankful that it brought that medication back into rotation. Soo I was in the hospital over our 10th anniversary. (Don’t worry, Palm Springs in the spring made up for it!)

Once home and back on IV’s (including the one I am technically allergic to) in January, I started having issues with my heart rate, something totally new to me. It culminated with an afternoon call from my Dr who had just received worrisome lab results and wanted to admit me to the hospital (back in Ann Arbor) to get things under control. Thankfully, by the end of that conversation, we compromised with me drinking liquid potassium on top of all day bananas and taking magnesium, etc..

All that to say, it’s been a YEAR now since that mess, and the nasty nasty potassium is leaving the building! BYE. The rest of the year was nowhere near as dramatic, by the grace of God, although I did have a couple of decent colds which required oral antibiotics. The happy news, which I am so surprised about, is that it has now been a year since I’ve done IV therapy! This is a long time for me and very exciting. Also ironic, now that I have a port. Hah.

I do need to temper that happiness by saying that I am only working on more or less than 40% of my lung capacity so things could definitely be better. There is always the possibility of improvement, but never the promise of it, you know? Josh and I don’t spend a lot of time worrying about numbers, etc; we focus on what is right in front of us and do our best. The older I get, the more grateful I am that God has gifted me (us!) with an optimistic spirit. It is hard to explain how significant this is to me. There are times or moments of fear when things get tough, but our LIFE is full and joyous (Nehemiah 8:10b!).  Swimming keeps me healthy and always helps me stretch my boundaries, and Josh makes sure I keep exercising one way or another. He is my other greatest gift from God!

We’ve been getting very un-apologetic about staying away from people with colds. It is harder than it sounds, but we believe it to be very important. So far this winter there have been three separate instances where others around me got knocked on their knees by some virus or other and I never even had a sniffle. I was telling my mom that at work the other day, and we had JUST  finished listening to this song. I couldn’t say it better myself. (The visuals on this video might be distracting, but give it five minutes and you won’t be sorry!)

So anyway, there’s my health update! It’s late January and things are looking up. I just hit a goal in the pool that I haven’t hit since my last cold in October, and we’re encouraged by that. Thanks for the love, and as always for the prayers.

Mark & Jess

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Oh, the cuteness.

I took these pictures of (my brother) Mark and Jess and the kids a couple of weeks ago. They’ve had a big year this year, with Baby Clara arriving. But behind the scenes things have been difficult. I haven’t talked about it much here, but Mark & Jess are in a place where they could really use the love and support of their friends and family.

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Colleagues from Jess’s work set up a Go Fund Me page for them because their situation involves financial strain. On that page I wrote more of a description of what is going on with them, and instead of writing it out twice I’m asking you to check it out here!

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Thanks for caring for these people that I love.

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We Went to California – San Diego

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Coming out of Ramona, there was a bit of a culture shock when we hit San Diego. Josh’s conference was downtown right on the bay, and our room had a beautiful view of the water. But we still had sand in our shoes. Ha!

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Fancy, huh? I loved the marbled art in the lobby.

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This was our view of the fourth floor pool…

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… (Which, obviously, is different from the third floor lap pool.)

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Anyway we had some free time before Josh’s first conference sessions and it was our last day with a car, soooo – off to La Jolla to see the seals!

They made an appearance in the video I made too, so check it out!

Video link here.

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I know it’s very mid-western slash touristy of me to say this, but I really love watching seals. Harbor seals are adorable, and the sea lions were swimming and playing in the waves like golden retrievers or something. I could have watched them all day.

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These people were swimming in gunky seaweedy water WITH seals, and frankly I mean more power to them, but there is no piece of me that could imagine ANY of that. Gross.

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Check out my kindred spirit; I named him “Monday Morning”. He just literally could not.

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Once the sun burned the fog off we headed through town for lunch (fish tacos, duh) and then to Mission Beach (or Pacific? Where is the line??) to swim in the waves.

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The water was super full of seaweed and I’ll never claim to be all that mature about that. But the waves were big and Josh rented a boogie board so we had a good time anyway. I actually got so thrown around by the waves – they’re so powerful! – that I kept having to take breathing breaks.

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The next day, I took the bus to the San Diego Zoo, but if you squint doesn’t the map look like an amusement park? Disney? This place is huge! And hilly!

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Most of the “exciting” animals were snoozing when I was there so that was disappointing (I’m looking at you, polar bear, koalas, lions, tigers, other big cats) but even still many were out and about and so cool. I mean when is the last time you sat and had a granola bar whilst hanging out with hippos?

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This tortoise was super social, if that’s possible to say? He followed people along the wall and was making eye contact and stuff. He even posed for the picture. What a gem.

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The NEXT day while Josh was at the conference, I took the bus back to Balboa Park and met my mom’s old friend/roommate and my “aunt” Helen. They lived together in San Diego back in the day and it was so nice to see her. And the botanical gardens, of course.

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On our last night in San Diego, we Uber-ed out to Sunset Cliffs for a little exploring and oh man, I’m so glad we could! What a crazy beautiful place. I could definitely have done without the mile-long staircase (did you see it in the video?) but at least I didn’t have to carry a surfboard.

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I get nervous about getting stuck out somewhere when the tide comes in, thanks to a bad experience in Alaska years ago, so we didn’t go all the way out to the farthest point, but we saw enough to get the drift.

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After that we walked the mile or so back into town on Point Loma as the sun set. Life is just so hard sometimes, huh..

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We sat outside at one of these tables at the Little Lion and stayed there until our next Uber arrived to take us home, and that was that.

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One last sunset picture from the hotel room.. The sun in the sails – so beautiful!

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We Went to California – Ramona

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Ramona? Who goes to Ramona? That would be us!

Josh’s latest work trip was to San Diego (the week before Labor Day), and I like, reeeally didn’t want to miss out. We waited until the very last minute to buy my ticket, though, because I was on oral antibiotics and didn’t know which way things were going to go. It’s hard for me to ever plan travel ahead of time – especially when plane tickets are involved. Thankfully, things didn’t escalate on orals and by the time they were finished I was feeling ready to travel.

… I say “thankfully”, but this is something in life I am so grateful to God for. It’s hard to take risks sometimes, and when you do and it works out better than you had planned, it’s such a cool feeling.

ANYWAY so the trip! We had one night before Josh had to be in SD, so the second we landed we rented a car and headed to San Marcos to see my great-aunt Eileen. Her ranch is one of the more beautiful places I’ve seen and it is always a treat to see it, her cows, and of course her! I wish you could all see this place. It’s unreal.

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In Michigan we get frogs and worms in our pools, but check out this unwanted visitor!

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Again, wish you could see it. She’s probably got a story from a different part of the world for each of the things on those shelves!

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It’s been a few years since Josh and I have been to see Aunt Eileen, and although our visit was brief it was really good to see her. Quite the lady, that one!

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She’s got 9 cows, I believe. This is the only one who felt like hanging out.

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After dinner Josh & I had to hit the road b/c we had to get to Ramona, where we had rented an Airbnb. It was sort of in the boonies and we wanted to get there before dark but didn’t quite make it.

Probably because I kept making him pull over for cactus pictures.

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We didn’t get there in time for sunset, but hoooo man, the sunrise?! Beyond beautiful. You guys, Airbnb is just the bee’s knees. After this stay it is impossible to convince me otherwise. We never would have thought to stay in Ramona without it. Our “cottage” is hard to show in photos, but if you have a few minutes this video will give you a better glimpse – of Aunt Eileen’s ranch too..

Video link here.

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Dead center. See him? #wildlife

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We explored around all morning and then drove into town to see what Ramona has to offer. Apparently there are lots of antique shops and small-town businesses. So, right up our alley. Still sad I left that stained glass piece behind.

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It’s been a while since I’ve had a good shop cat encounter, so thanks Olive. You made my day.

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After a day of exploring it was time to rinse the dust off our shoes and head down to San Diego.

Goodbye little cottage! See you next time…

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So that’s Ramona! We crammed a lot into those 24+ hours in some ways, but there was plenty of porch swinging and hummingbird watching too.

Summer So Far

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How’s your summer going, you guys? I know some of you are probably ready to move on to back-to-school and fall and stuff but that is just never me. The summer feelings are going strong around here! I thought I’d share a few pictures of things we’ve been up to lately.

Lots of swims at the Brandsens’ pool this summer, which we are so grateful for. We like to bring Thomas and Jane to see their fish friends.

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We haven’t traveled much yet this summer, except for going to Florida last month. But really, it’s the best time of year to enjoy the back porch life and I’ve definitely excelled at that. Such a homebody. Plus I caught a cold when we got home from Florida and since then I’ve been fighting off a lung infection. I’m just finishing up a couple of weeks on oral antibiotics and it looks like I might have made it out without IV’s! Very grateful, especially since it’s been six months now since I’ve needed them and it would be a reasonable thing to expect.

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We had record amounts of raspberries this spring/summer, and in desperation I started having other people come pick for themselves. Our freezer can only handle so many! Ha. We’ll see what the fall crop brings, but if you’re a local raspberry lover, let me know. I may need you.

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Book recommendation! I cried my way through Hope Heals earlier this summer and then bought it so I could highlight it/lend it out. You know how every now and then a book will just hit you right? This was that for me. You should read it and see for yourself!

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At the end of July we took our Etsy shop to a market for the first time since summer 2014, and it was so fun! Our pal Joyce has a vintage shop about 45 minutes away in Grand Haven, and she started a market this year with 30 vendor friends. It could have gone either way but I guess it was a smashing success for her, and a definite good day for us too. Yay!

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Lake Michigan in the summer. We haven’t been enough! Hopefully we’ll get a few more shots at it. Josh and Nate bring the windsurfer and/or boogie boards but I like to just swim in the waves. My legs are still sore from swimming in this past weekend’s crazy undertow.

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Peach season. One of the best parts of summer.

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We swam one morning with all of our nieces and nephews, minus baby Clara. So Thomas and Jane (Patten) got to play with Callum and Everly (Brandsen)! Definitely a summer goal met for this auntie.

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I made a video of that morning (of course) because I know even a year from now it’s going to be the SWEETEST memory.

If you can’t see the video, here’s the link.

Back to the peaches, they’re best when enjoyed picnic-style on the front porch. You know.

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So! There’s a little look at our summer.. We just took a gamble (kinda toeing the line with my health) and bought plane tickets for San Diego, so that’s coming up soon-ish. Josh has a conference and you know I love to join in on work trips. Last year this conference was in Atlanta and I’m just realizing I never posted about our time there.. Gah! Somehow I’m always playing catch up on this blog.. Just imagine if I tried scrap-booking.