Tis the Season

I opened an envelope from the mailbox today - a stunning foiled gold Christmas card with a picture perfect family that I know and love dearly. I smiled, feeling the children’s contagious joy emanating from the photo. I sighed, realizing how grown they each look and wondering how another year has already passed. I felt gratitude for the adults in the photo - good friends of mine who I am so lucky to look up to. But then, as I hung the photo proudly on the fridge, I was surprised to feel the sting of tears on my cheeks.

In an instant, the weight of the season and its loneliness came crashing down on me. They say “ ‘tis the season “ for things like… taking family photos, sending christmas cards, visiting Santa, baking the cookies, hosting the parties, and hanging the lights.

But it truly is also the season of grief, of loneliness, of longing, and of hurt for so many. The weight of the wondering, waiting, and wishing is somehow magnified under the soft glow of the Christmas lights. Through the familiar and comforting hum of Christmas carols, the voices in the back of your head still echo, unwanted and unwelcome.

It’s “the magic of the season” but what if you don’t feel it? What if, after the initial smile at each card you receive, you find yourself wondering if it will ever be your turn - if you’ll ever have a husband to argue with about matching outfits for the photos. If you’ll ever have to diffuse a meltdown over a now-crumbled gingerbread house, or have kids bounding in to your room at 5am to exclaim “MOM! Santa came!” A simple phrase, but one I’ve dreamed of hearing for longer than I can remember.

If for you this season is a complicated mix of joy and sadness, of gratitude and grief, of love and of longing, just know that you are never alone. Christmas & the holiday season is magic and all things merry and bright and cheerful - but it hurts sometimes too. Behind the instagram-worthy dinner tables, beyond the picture-perfect Christmas haul, past the Pinterest-inspired photoshoot, I think there’s a piece of each of us that feels the weight of the what-ifs a little bit more this time of year.

Mayo Clinic updates & next steps

I’ve started and stopped writing this update probably at least a dozen times since returning from Minnesota on October 1. I usually get a strong start and then end up crying and abandoning the whole idea because the reality is that the only update I have to share is not on I can even come to terms with myself.

But my community of people, both online and off-line, have carried me through so much and supported me in so many ways, including financially through my spot fund account, and I know there is a bit of genuine curiosity that comes from a place of true love and care. For that I am so thankful and for that, I’m finally taking the time to do a hard thing and to put digital pen to paper.

Essentially, to put it simply and concisely, the extensive testing/imaging I had done at Mayo this fall did not find anything new. The neurologist I saw there does feel strongly that the cause of many of my symptoms is a CSF leak, specifically a CSF- venous fistula. Unfortunately, the imaging they did was not able to pinpoint the location which means there’s no possibility of a definitive repair/cure.

Each day of imaging required a lumbar puncture/spinal tap (LP), and for some unlucky patients (aka me), the LP itself creates a new hole for the CSF to leak out of, causing an acute worsening of symptoms. The fix for this is a blood patch (EBP) where they draw blood from a vein in you arm and inject it into the spinal column, in hopes that as the blood clots, it will form a seal over the hole. So after several days of worsened pain & nausea, Mayo performed an EBP. 48 hours after this we flew home - I hadn’t felt any relief since the EBP but I was eager to get home and rest more comfortably. The flight was incredibly rough as sitting upright severely worsened my symptoms, as did the in-flight pressure changes. During the flight, I drafted a desperate message that I sent to my local neurologist as soon as the wheels touched down. The very next morning I was in her office brainstorming solutions - she felt strongly that I needed another EBP (likely because there were two LPs meaning two new holes, and only one of those was patched at Mayo), which she ordered right then, and as my symptoms were severe and unmanageable, I was sent to the ER to expedite the process. After a loooooong many hours sitting in a chair in the hall, it was determined I should be admitted overnight as the EBP would not be able to be done until the next morning.

The next morning rolled around and I was told the radiologist team had changed their mind and wanted to wait several days until attempting another EBP, citing that they wanted to give a full 7 days for the mayo patch to “take” and provide improvement. At this point it was Saturday, so I was sent home and told that radiology would reach out to me Monday, the 7 day mark, to perform the EBP as an outpatient. Monday came around, then Tuesday, then Wednesday. Still in excruciating pain, vomiting anything I ate, unable to sit upright. After several unsuccessful attempts to contact radiology, my neurologist finally heard back and was told they had refused me as a patient and would not perform the EBP under any circumstance. This was of course frustrating and mentally I tried to just focus on my symptom management, trying to build my stamina each day as I approached the date I was to return to work. I got just a little bit stronger each day and tried to get enough protein and fluids via smoothies and of course extra IV fluids. The biggest struggle besides the pain was that the vomiting meant I was not able to consistently keep down the medications that keep my other illnesses under control.

I did go back to work, but on my second night back experienced pretty severe chest pains and palpitations throughout the night with heart rates hovering around 130-160, even at rest. I went home from work and bolused myself with 2 liters of fluids, hoping that dehydration was the root of the symptoms. A few hours later it was clear I couldn’t manage this at home so I went back to the ER - but chose a different one this time given the experience from the week prior. Thankfully this is also the ER I used to work in and my old family took such good and gentle care of me. Un-thankfully, my heart rate continued to be elevated and my labs showed concerns for sepsis, so I was admitted. Honestly, at this point I knew it was for the best because managing at home clearly was not sustainable. After negative blood cultures and 48 hours of IV antibiotics, sepsis was off the table and radiology was consulted per my request, to evaluate me for a possible EBP. Thank GOD this radiology team had no reservations in agreeing that a second EBP was needed and it was performed the next morning. As is the case with nearly ever EBP I’ve ever had, pain management was a huge struggle in the days to follow, but it was almost immediately clear the EBP had worked and after 9 loooong sleepless nights in the hospital I was back home again, with zero physical stamina and a desperate need to get back to work.

The months since that discharge have been fairly uneventful by my standards, with daily pain and nausea continuing to be an issue but the acute worsening behind me. A tele-health appointment with Mayo in November confirmed what I didn’t want to hear - the only next option to move forward is to return to Rochester for more advanced imaging which yes, requires two more LPs and no, there is no way around that. This advanced technology is limited and has a waitlist, but I’ve been surprised that  was already offered an appointment for February 2026.

I have MANY qualms/hesitations/concerns about putting my body through this entire process again, which I’m sure anyone who has read to this point can understand. I was hoping to delay these scans and give my spine more time to recover, so I was admitted on Thanksgiving day to receive supportive medications to hopefully reduce symptoms and “bridge” me to a Mayo trip. That medication made me super sick and did not help my symptoms at all, so it’s clear that a return to rochester needs to happen soon whether I feel ready or not.

Processing all of this is so difficult, as is figuring out the logistics of getting more time off work, booking more round trip tickets, hotels, etc and all of it in the context of a new year and new deductible means this option is NOT cheap. But it’s necessary, and as I always do, I will find a way.

There is a chance they find something new this time and even a chance it leads to a cure, a permanent one. But there is also a good chance this more advanced technology finds nothing new - and that, of course, would be devastating.

I don’t know how much I’ll share about the process but I just wanted to update for those who have wondered how the trip went, what happened after, and why I’m going back. Thank you from the bottom of my heart for caring.

How to be a helper

“Look for the helpers. You will always find people who are helping.”

― Fred Rogers

As someone with chronic illness, I’m often asked by others how they can support the people in their life, in their inner circle. Here are just a few of the things I’ve learned through my own medical battles":

Offer specific assistance and avoid generalities

It’s one of the most well-meaning phrases that we are all guilty of using when those we love are going through a tough time : “let me know if you need anything!”, “I’m here for you if you need anything!”, or “I’m here for you anytime, just ask!”. These phrases are so well intentioned, and it does warm my heart every time I hear one, but please also know that these general offers for help can be hard to collect on! I know that my friends mean it and that I could call them at the drop of a hat for anything at all – but half the time I don’t even know what I need for myself, much less what to ask of someone else! I’m also guilty of minimizing these general offers – My friend did say “let me know if you need anything,” and now I do need a ride across town next week, but that’s a really far drive for her to make in rush hour, so I’ll figure something else out. Surely she didn’t mean THAT when she offered to help with anything. This is an example of an exact situation that happened recently, and God bless this friend for reaching out later and clarifying. “I really do want to help you, and I mean it when I offer. But I also need you to be direct and tell me what you need”. She encouraged me to go outside of my comfort zone and text directly the next time: “hey, I really need a ride on Wednesday, is that something you’d be able to help out with?”

Here are a few examples of things that you can say or offer that are easier to process and take you up on:

“I know you’re going to need to be resting a lot next week, can you let me know which night would be best to bring by some food or have it delivered to you?”

“I know you need a lot of rest but also wanted to make sure you have company if and when you want it. Is there a time I could come by to watch some movies with you?”

“I really want to be able to help you during your recovery, but I’m not sure what kind of help would be best. Do you need any help with meals, transportation, picking up prescriptions, or maybe other tasks I can check off your list?”

“I’m stopping at Target today, is there anything I can pick up and leave at your doorstep?”

Don’t assume that we don’t want to be included in social events or other gatherings – let us make the judgement call for ourselves!

Sometimes physical activities like hiking, camping, travelling, sports events, or other activities might be too hard for us to join in on, depending on a multitude of factors. Even though we acknowledge our own restrictions, it can still be hurtful sometimes to feel excluded because of our physical abilities. I would much rather have to turn down an invitation than to find out about a fun excursion through social media and wonder why I never heard about it. Something you might like to say could be “we are planning a group hike for next Saturday morning. How have you been feeling this week? I would love it if you feel up to joining, but if it’s not a good time for you, maybe you could meet us at brunch after the hike? We miss you!”

Reach out often, even if you don’t know what to say

When people are facing a medical crises or even grieving a loss, their friends and family are often faced with two options: risk saying the “wrong” thing, or say nothing at all. I may speak for myself on this one, but I would so much rather hear from my friends often, even if they don’t have words to improve or change my situation. Some of my favorite texts read something like “Hey, friend. I know you’re going through a lot right now and I wish I had some advice or words of wisdom. I just wanted you to know I am thinking of you, and I love you. Let me know if there’s a day this week you’d like to catch up!” When I work closely with loved ones grieving families I encourage them to be present, even in silence. You may not want to text or call because you are afraid you’ll say something wrong, but the power of love and friendship is in the phone call itself, not the content. Community is supportive, even if the community doesn’t know the “right” thing to say.

Don’t be offended or disjected if I don’t respond to your attempts to reach out

It happens all-too-often: I’m at home, recovering after a procedure with anesthesia. I wake up from a nap, roll over to check my phone, and smile when I see that a friend sent a text to check in. I quickly fall back asleep and don’t end up responding to the text. Please know this: my lack of response is not a lack of appreciation for your support. It isn’t an indication that I don’t want you to send me the message next time. I love knowing that support will be there, even if I’m not able to express it in the moment. I try to do the same for my friends in the community. Recently, I sent a text that said exactly this “Hey friend. I’m thinking of you today! Please don’t use any of your limited energy to reply to this with an update, I just wanted you to know I’m sending lots of love!”

Offer multiple options when planning a hangout or meetup

Along the same general lines as my first point, coming up with enough brain power to choose an activity can be tough! I love it when my friends say something like “I’m so excited to see you this Saturday like we planned! I wasn’t sure what you might be feeling up to. Would you rather have a relaxing movie night at home with ice cream, or are you sick of being home and feeling cooped up? If so, we could head out to dinner or even just out for a drive around town. You can let me know Saturday, no rush!”

This kind of message doesn’t require me to brainstorm from the list of 1,000s of activities around town. It does give me permission to admit that I’m not feeling up to leaving the house this week without feeling guilty for being “lame” or letting my friend down by not wanting to do something more fun. It allows me an opportunity to be honest about my limitations without feeling like the party pooper. This kind of message gives me the option of doing something more “exciting” – but I don’t feel pressure to pretend I’m up for something I’m not.

Try not to let the chronicity of long-term medical conditions discourage you from continual support

This may be an unpopular opinion or statement, but it’s something I’ve noticed over the years. When a “healthy” person has an acute, single medical crises like a surgery, car accident, or unexpected hospital stay, the support from friends, family, and coworkers is astounding. Flowers are delivered, the stream of visitors in and out of the hospital room is constant, meals are coordinated, and money is donated to sites like gofundme. This support is incredible, and I certainly don’t mean to say that it should not be provided as such. However – consider the other side of the narrative. Last year in the depths of what was a terrible year health-wise, I found myself admitted to my own hospital for 6 long days. I didn’t hear a word from a single coworker – with the exception of my manager who texted to ask what day I would be back at work. Only 3 of my friends reached out to ask how I was doing. I generally felt like people just thought “oh, there goes Sarah, admitted in the hospital again like she always is”. Despite the fact that this isn’t my first admission, it’s not run of the mill for me – it’s scary, lonely, and mentally exhausting. Just because I’ve done this before doesn’t mean I don’t need any support behind me.

 I don’t say any of this to shame anyone – only to help shed light on the isolation that chronic illness brings. If your friend or family member has a chronic condition with repeated procedures, hospitalizations, or other stressful events, try not to let your support taper off. I’m not asking you to send flowers or to start a fundraiser every time I’m sick – I just need to be reminded that my community is rallying behind me every time I fight. Something as simple as a message that says “I heard you are in the hospital again. I know this must be so hard on you. You are so loved!” can help me to feel less isolated, less like a burden on my friends.

Try to get comfortable with being uncomfortable with my honest responses to your questions

True friendship requires vulnerability, and that means we simply have GOT to get away from the “I’m good thanks, how are you?” narrative. How often do we say this to each other on days when, on the inside, we are anything but feeling good?! My favorite, most trusted friends are the ones that I know I can answer honestly without scaring them away. It is tough, honestly, and it feels like a learned skill, even with those trusted friends. The older and more experienced I get, the better I am becoming at being honest. Some of my friends can now expect a response something like “I’m having a hard time this week. I’m in a lot of pain and I’m really nervous for my appointment next week.”

Please understand this isn’t necessarily a call to action – if you want to offer help or words of wisdom, that’s fine, but it’s important to me that you know I’m not saying this for attention, pity, or that it’s a cry for help. Trust me, if this were true, I wouldn’t have to pep talk myself into sending that honest reply. I don’t mean to sound dramatic or needy, I simply want to be honest and feel understood, even when things are messy and not at all “good”.

All in all, if you’re looking to help and support a family member or friend through some tough times, know that your presence, your kind words, and your physical gestures are so incredibly appreciated. Please don’t be afraid of doing or saying the wrong thing – doing anything at all is so much better than fading into the silence. Chronic illness, medical treatments, and hospitalizations can make a person feel isolated, less important, and less loved. Simple reminders mean the world to us when we need to be convinced otherwise. And if you’ve read all the way through this, BLESS YOU for taking the time to learn how to support the people you love most. Speaking from experience, I can assure you they appreciate it more than you’ll ever know.

Leavin' on a jet plane: tips for taking your chronic illness on vacation

I have always loved the idea of travel, the concept of escaping normal, daily life and seeing new things. When I was diagnosed with chronic illness, the underlying passion never changed, but it certainly made things more complicated. Through the years, I have learned a lot about how to prepare for travel in a way that sets me up for success and to truly enjoy myself rather than feeling miserable and anxious while away from home. I know many of my fellow chronic illness warriors are hesitant to travel because of the complexity it requires, but I hope this helps at least one person take a step towards exploring the world. We deserve to have just as many amazing, life-changing experiences as anyone.

*disclaimer - this post contains affiliate links to products I have personally purchased and tested. If you purchase these items through these links, I receive a small commission, at no extra cost to you.

Packing - checked luggage:

• Make a list, check it twice! Making a packing list ahead of time makes the last-minute packing so much less stressful. Use a notepad on your phone, or a physical pen & paper if you’re a stationary junkie like me! I find it most helpful to make separate categories within my list, especially if the trip entails different activities that require different items, for example: medical supplies, travel day, day at Disney, competition days, beach day, etc. Check things off as you pack them, and then when you’re done packing, go back through the suitcase and cross them off once again. You’ll feel much better heading out the door if you know you have every last thing you could possibly need.

• Packing cubes are a must! Depending on the trip, I use packing cubes either by category, or by day! A packing cube may have all my pajamas/loungewear, or it may have a full head to toe outfit for a specific day/outing (example: a packing cube with my mouse ear headband, my Disney shirt, an undershirt, a pair of shorts, comfy walking shoes, a pair of socks, and my fanny pack - everything I need for my day at Disneyland all in one place)

• If you are packing for a longer trip or maybe just packing more bulky items, consider using compression space saving bags! They come in 2 versions: one requires a vacuum and the other you can just roll the air out of. This saved my life when I went on my recent ski trip and needed ALLLLL the bulky snow attire!

• Try not to over stress about forgetting simple day-to-day items! For the majority of trips, you’ll be able to stop at a store once you get to your destination, if you need to. Priorities: Make sure your prescription medical equipment is in your carry on, don’t forget your drivers license & insurance card. If you forget a toothbrush or some shampoo, just grab some when you get there, no biggie!

• Plan ahead for hydration! There are a ton of hydration options out there these days, but my favorite and go-to is Liquid IV! I love the variety of flavors and the packets are so small and lightweight, it’s super easy to bring with you wherever you go. I usually get some 16.9oz water bottles at my destination (see below for grocery delivery suggestions) so that I can make up a quick, cold bottle of liquid IV when I arrive, and a few times each day! I also love and use these strawberry lemonade packets from pedialyte!

Packing - carry-on:

• Always, always, always pack your daily medications and other medically-required items in your carry-on. Traveling is stressful enough, and the last thing you want is to arrive at your destination with a missing suitcase full of medications. I love using this pill container, and also frequently use these disposable bags to group meds together by when I need them! (AM, PM, bedtime, etc.)

• If you require medical fluids, sharps, or other equipment that usually isn’t allowed on an airplane, pack all of it together in a completely separate carry on: think a duffle bag, small suitcase, or backpack. This bag will be allowed in addition to your “normal” carry-on, and the airline cannot charge you for it if it only contains medical supplies. If it has a mix of medical supplies, clothes, personal items, etc, the airline can charge you for bringing it on board. I love using this duffle because it slides onto a suitcase handle very easy and securely, and when I’m headed home with less supplies it rolls up and becomes super compact!

• If you have a prescription for these items or if they are labeled with your name and date of birth, leave it on! I’ve never been asked to verify that the items are mine or that they are medically necessary, but I leave those pharmacy labels on just in case.

• Make sure to pack multiples of medical items that you know you’ll need. For example, if I’m planning to do just one port access & infusion while I’m away, I’ll pack 3 port needles, 3 dressing change kits, and at least 3 microclaves & caps. I get my port accessed just fine on the first try 99% of the time, but the last thing you want is to be at your destination and stressing because you only have one chance to get it right. I’ve never ever used 3 needles in one sitting, but I will feel better knowing there’s no pressure.

• Make sure your carry-on has any items you might want to easily access on-board the plane. For me, this includes my nausea/motion sickness meds, motion sickness wristbands, my favorite essential oils, peppermint gum, my phone & ipad, my headphones, and of course a portable, mobile charger to keep everything all charged up! This kind is my favorite because it can charge two devices at once, and it also can charge my phone about 4-5 times before it needs to be recharged! I also usually bring some anxiety meds just in case - i’m a terrible flyer!

• If you’re flying on a redeye or exceptionally long flight, consider bringing a comfortable travel pillow and maybe even a small blanket. I use both of these styles interchangeably. It takes up a bit of space, but you’ll be so thankful when you’re comfy cozy on the cold plane at 3am, trust me!

• Bring an empty hydroflask or similar water bottle in your carry-on, and fill it up with ice water as soon as you get through security. I love this brand - more budget conscious and keeps drinks cold just as long! This, at least for me, ensures that I’ll have plenty of ice cold water for the flight, and when I get to my destination too! Plus, it’ll save you about $7 on airport bottled water, and its good for the environment, too! Many airports have self-service water-bottle filling stations these days, but if you can’t find one, just head to the closest coffee shop, bar, or restaurant. They’re usually more than happy to fill it on up for you!

• If you struggle with chronic pain of any kind, I highly recommend packing a few refillable ice packs in your carry-on. They take up almost no room, contain no liquid, and in my experience the flight attendants are more than happy to fill them with ice for you.

Preparing:

• The best favor you can do for yourself is to put conscious effort into making sure you will feel your best for travel day and for your whole trip. For me, this means scheduling an infusion either the day of my flight, or the night before for early flights. It is a time commitment for sure, but I want every shot at feeling good so that I can truly enjoy my trip. If you know there’s something you can do to help your body get ready - take the time and do it! Whether it is an infusion, drinking extra fluids, or getting some treatment for pain relief - your future vacation-loving self will thank you for it.

• If you’re wanting some entertainment during your flight, download a few shows, movies, or podcasts onto your device while you’re still at home. Your airplane may have free internet access, but I never count on it!

• Charge up all your devices - nothing worse than landing at your destination with a dead phone!

At the airport:

• I have never required airline assistance such as a wheelchair, etc, but it’s available! You can visit this website 72 hours before your trip for more information on how to arrange assistance at the airport.

• If you’ll be bringing an extra bag of medical supplies on board the plane, allow extra, extra time to get through security. In my experience, the procedures that TSA use to search your bag can vary widely airport to airport, and even trip to trip. Sometimes they just pull my bag aside, look through it, and hand it back, but sometimes they remove every item, swab & test all of the IV bags, and do a full-body pat-down. I never know which of these two experiences it will be that day, so I always allow enough time for either circumstance. Travel day is incredibly stressful, and you really don’t want to be sweating it out at security, thinking you might miss your flight.

• At TSA, declare any medical items you have with you. I’ll usually tell the agent something along the lines of “this bag has medical liquids and equipment, it will need to be hand searched!” Sometimes they pull it aside just then, but sometimes they’ll go ahead and run it through the x-ray anyways and then do additional screening afterwards.

• Be strategic with that carry on - if you do pack a carry on with medical equipment & a mix of other personal items, be advised that the TSA may remove and search every single item - any clothes, etc must be searched in addition to the medical stuff. If you do throw anything in with those medical supplies, consider a bulky pair of shoes or something that won’t take forever to get tucked back into the suitcase when the search/screening is done.

• On your way to your gate, stop at the first restaurant you see to get that water bottle filled. Hydrate, Hydrate, Hydrate!

• If you’ll need special assistance or accommodations for boarding the flight, stop by the gate agent desk and let them know how to help you. They can only help if they know, so don’t be shy!

At your destination:

• Take some time to unpack and settle into your hotel, airbnb, or wherever you’re staying. You’ll feel much more relaxed if you feel at-home vs living out of a suitcase/mountain of clothes!

• If its available where you are, I 10/10 highly recommend ordering a PrimeNow delivery through Amazon or a similar service. You can even get it all set up before you arrive and just click order once you’re at your destination. Order groceries that you know you like, bottled water if you need it, and any other essentials that you didn’t pack or forgot to include. I always order some “safe” foods that I know I can eat even on the days I feel the sickest - crackers, applesauce, toast, etc. I always hope to feel well enough to eat all kinds of vacation food, but it takes some stress away if I know I have the option of eating light, too.

• If you’re traveling with a group, be sure to communicate your needs and/or restrictions. I used to always be too shy to bring anything up, but would end up feeling physically terrible because I pushed myself too hard. Don’t be afraid to speak up if the group hike is likely to almost kill you - you’re better off staying back at home base and enjoying a good book or movie. Your friends will understand, and they’ll be glad to have you feeling your best for the rest of the trip.

Overall, in my opinion, the benefits of traveling always outweigh the risks and the stress. I have a huge increase in anxiety leading up to every single trip, and every single time I have to talk myself into going. Once I’m there, though, I find myself wishing I didn’t have to go home. With the appropriate preparations and organization, traveling with your chronic illness is more than possible - it’s necessary. Get out there. See the world. Make memories. You may have to travel in a different way than other people, or with some restrictions, but the world is yours. Get out there and enjoy it.