Logistics
As it turns out, there are a lot of logistics that accompany any major life event (I mean I knew that, but have not experienced it personally for a while — maybe not since we moved). I am trying to handle them in a way that does not exhaust me. Here are examples of a few logistical challenges that have cropped up:
- Follow up related, #1: I was supposed to follow up with one of the Mt. Sinai cardiologists tomorrow, but the office is really far and I’ve really already transitioned care to my home hospital. Still, need to let them know (and also thank them because they really tried very hard to do the absolute best for me during the hospitalization).
- Follow up related, #2: The only appt I could get for my next home hospital follow up was during patient time. On the plus side, the EP office is literally across the street from the endo office. On the minus, I’ll have to move patients around and I hate that. (Will do it, though.)
- Follow up related, #3: Need to figure out all the Hopkins travel stuff.
- Travel related #1: Haha, we were going on a Disney cruise in April. While cruising is not necessarily dangerous we all decided that being out at sea is probably not ideal right now so we switched to a Disney trip so the kids wouldn’t be too disappointed. Most of this is now already booked but there are some annoying things we still need to do (like try to get a cabana at Volcano Bay so I’ll have somewhere to hang while I am not going down water slides etc because I am not sure I am ready for that).
- Travel related #2: I am supposed to give a talk in another state requiring two flights in early May. I still want to do it but Josh wants to go with me. I am not entirely sure that is necessary but at the same time I get that all of this is new.
- Travel related #3: I was supposed to go to an ENDO meeting in July. Taking Josh would be tough bc of the kids. Maybe by then we’ll all feel comfortable. YES, my defibrillator may go off someday. But it also may not go off FOR YEARS. Plus, the whole point is that it should prevent my needing to be resuscitated.
- Travel related #4: My former division chief/mentor at Duke is retiring in June and then I found out that Aimee FREAKING Mann (longtime readers know she is my nostalgic favorite) is playing at the Carolina theater (Durham) the night before. I feel like . . . FATE wanted me to travel to Durham that weekend? I will be really sad not to go, but also, see above.
- Therapy. I need this, I know. Setting it up is never easy. Working on it.
- Camp. Due to the timing of all this I have very little of the summer figured out. That said . . . it’s probably fine. We live in an area where most camps do not typically sell out, and my kids do not need to be in camp every week of the summer anyway.
There are more, but those are just some examples. This is why I am trying to take it easy and it’s also . . . hard. Yesterday I was pretty darn productive until about 3 pm and then spent 3 – 6 pm basically lying down and then went to bed right after Genevieve at 8:30 pm. I am not very patient and obviously want “new normal!” to arrive instantly and well, it hasn’t. Maybe I will end up finding some patience in the end. I guess I have to.
Other Things That Are Not That Great
In other news I might have to start limiting coffee (!!!! NOOOOOO !!!!) because apparently it now give me palpitations (palpitations which I now know are frequent PVCs and other weird looking beats now that I have discovered the Apple Watch ECG feature). I can’t decide if it always gave me palpitations and I am just now more aware of them or not but I think it’s pretty new. I did notice them several days before The Event and thought I was just drinking too much coffee in San Antonio, which I probably was. But now I am feeling them after one cup of 2/3 caf so, yeah. Hopefully I can find a dose that is still okay because I love caffeine so much. Not as much as running, but close.
Let’s end on a higher note . . .
I do have a lot of positives to report. I have WAY less pain!! I really haven’t thought much about pain in my side or at the center incision today, and that is great.
My switch into new planners is going well, I will share my functional weekly spread in another post.
I am getting a pedicure tomorrow (my running friends even got me a gift card!) and am very excited about that.
ONE. DAY. AT. A. TIME . . .
30 Comments
I mean…. seriously? CAFFEINE??? This seems grossly unfair, ha ha. Maybe half caf will be the solution. And yes- I can see how the logistics are complicated when you go from TOTALLY NORMAL to complete chaos in one day.
A Disney vacation sounds like the perfect compromise- and you can do a cruise another time. I’m wondering- what happens if the defibrillator goes off? What does that mean? Anyway… I know it’s hard to imagine now, but at some point you will have this all figured out. For now I’m very glad the pain is subsiding! Enjoy your pedicure : )
Hi Sarah, I am a longtime reader (since before you had A.. I randomly found your blog when I was an undergrad at UNC and you were doing your fellowship in the area) and never commented and just wanted to say I feel you for what you are going through. I found out I have osteoporosis last year (and I am in my mid 30s) and can relate to a lot of the challenges you are going through with a life changing diagnosis.
Anyways, when you said you had trouble with finding a therapist, I wanted to comment since I am a psychologist. While I am in CT, I wanted to pass along a referral in FL of a great therapist who may be a good fit (she is a health psychologist). I do couples work and have had people see her individually and have spoken with her about shared patients, and she is phenomenal.Anyways, wanted to pass along if you hadn’t found one. Not sure what part of FL she is in, but she could likely do virtual.
https://www.drlindsaybira.com/
Sending you positive & healing thoughts, Sarah. I hope y’all enjoy your trip & you start to get some of your energy back.
Hi Sarah, I feel grateful that you still have the energy to share your process with us. I stumbled upon Dr. Gloria Mark’s book on Attention Span, which frankly is the best book I have read on the subject and I read many. She mentions at the beginning she was suddenly diagnosed with stage III colon cancer and how that event shifted her perspective from productivity/living fully to optimizing her wellbeing. I feel like this might be key shift in your life right now. Cal Newport also mentions in an interview, he got good at studying because he developed a heart condition as a college student and had to give up sports. He shifted his focus to academic excellence. I feel lucky to see you transition to a new pace and I am curious to see what will be the new passion for your abundant energy.
You have a lot going on right now and it’s such a big life adjustment so I can understand how logistically complex all is! I imagine Josh has some trauma from witnessing what happened so I get why he doesn’t want you traveling alone but that does make things tricky logistically!!
I really hope you find an ok amount of caffeine! I had been drinking half caf coffee for awhile but recently switched back to full strength because I got tired of maintaining 2 different kinds of beans/grounds! But I didnt really notice a difference between full and half caf. So it seems workable if your body can adapt. That said I drink 3 cups of coffee so I am drinking a decent amount!!
Sarah, I have been reading your blog/newletters/listening to podcasts for a couple of years now and have really enjoyed getting to know you and knowing that there are other people out there whose days are as crazy as mine. I also want to say how very sorry I am to read about your health issues going on right now and I can tell you from experience (albeit my son who had 2 strokes at 3 weeks old) it does get better. Your life changes and many times you don’t see things for the good…how could you, this life changing event has made my life a living hell. But you adjust, realize that things could be worse and you make the best of it. My son is now 10 years old and we have our daily struggles but we also have a lot of good times. It is what you make of it. I know all of this is very shocking now and hard to see positives because you are so angry (at least I was) but they are there and it will get better! Hang in there!
You can take away my running. You can take away my coffee. But you cannot take away my running AND my coffee! (Note- Starbucks pike place decaf is actually very good)
Oh I second this. Taking the caffeine is just a bridge too far…. Hang in there.
Third this!
Thank you for providing such a detailed description of what you are going through and how you are handling everything – so helpful and inspiring for others who are dealing with life-altering events.
Come see Aimee Mann! You know the Triangle has many medical professionals PRN! Also, no bad seats in the Carolina Theater…
I get the hesitation. But it is also nice to have things to look forward to.
I saw Aimee in that same theater in 2002 or 2003 and the idea of missing out . . . I honestly REALLY want to go! There was a massive snowstorm and Josh and I drove anyway and the theater was like 30% full and it was amazing.
I actually have a caffeine related rec for you. Not sure if you drink iced coffee/ cold brew ever, but when I was pregnant (and trying to cut back on what was a major caffeine habit, without quitting) I found a brand called Explorer of concentrated cold brew. You can buy it in regular strength, half caf or no caf. It’s really good. I hope this helps as I would also have a hard time at quitting coffee!
Just sending you lots of love and healing vibes from California. You are taking this amazingly well and are an inspiration to many thousands of people.
Managing logistics and uncertainty is a hard thing. I’m happy to hear you are feeling well enough to deal with the logistics. Sending you best wishes as you continue to navigate everything.
Lady, I recently transitioned off my estradiol patch bc of recently discovered genetic cancer risk (woo) to see just how bad my hot flashes are… the alternative medication would require elimination of caffeine. I’m trying to figure out if the tired resulting from the night sweats outweigh the tired from a future theoretical lack of caffeine… so can totally relate to that. Decaf isn’t so bad though if it’s the taste you like.
Glad you’re feeling better!
Gah not caffeine too! I used to be one of those “coffee doesn’t affect me” people, and then I had to cut back to just the mornings, and later to just one cup. Though the definition of “one cup” varies from day to day.
Logistics are hard even under the best circumstances, and so much more so after an major event. It will all work out, but yes it’s tough now.
Caffeine, too!?! That’s like adding insult to injury!
Limbo time, where you know your normal is changing but don’t know exactly how yet, is hard! Sending you lots of virtual support 🙂
As the spouse of a husband who had major unexpected life-threatening health issues, I *completely* felt very similarly about travel (my husband was convinced we were somehow going to make our end of summer Europe trip – spoiler alert, we did not but we did end up going a few months later). It is more than OK to temporarily limit near-term travel and do a time will tell on later trips (like in July). Physical and emotional readiness are two different things. “Not now” is not “not forever” though I get that it’s hard to cancel things you were looking forward to (or would want to do).
I’m sure you’ve heard this, but it’s hard to find a therapist who had openings and is covered by insurance and you gel with. I’ve given up on the insurance part (and yes, there’s privilege in that). I submit an out of network claim for all my sessions, and I get paid back some amount of it. A week hospital stay/surgery means you may have met your deductible for the year which may help?
I’m unable to have coffee due to heart issues. I had heart surgery in 2016 which helped, but I deal with POTS and have lots of PVCs etc. I am able to drink matcha so that might be something to consider down the line if coffee is a no go for you.
Also I went to the women’s heart health clinic at Stanford and they have a therapist who specializes in therapy for women with heart issues. I’m imaging other medical centers might have something similar. I found that, plus cardiac rehab very helpful. I wish I had done both much sooner!
Good luck with all of the logistics! It is a lot to manage chronic health issues, but you will find a way through it.
Sorry to hear all the logistic challenges. This type of life event does impact the life of everyone else in the family. I’m sure they are all supportive and understanding but you may also feel guilty or frustrated for the changes that affect the kids. this transition process is tricky, hopefully not too long until you find the new normal. What about decaffeinated coffee? I love the smell but try not to have too much caffeine which can speed up heart beats for me too.
I get heart palpitations if I drink coffee too frequently but find I can drink caffeinated teas without any problem. Maybe something to try? The world of high end loose leaf teas is pretty amazing.
First-time commenter (I think?), and I wanted to let you know that I’ve been thinking about you and your family. This heart incident during your race is so crazy! It’s a lot to process. I teared up when I heard your podcast update about your ambuluance ride and can’t imagine how scary that must have been. Sending you lots of positive well wishes.
I’m a long time listener/reader and wanted to thank you *so much* for sharing your experience in such detail, especially as a woman facing heart challenges. I began experiencing SVTs at 30; they were written off as panic attacks despite not having any history of anxiety. It took more than a decade to be diagnosed, and has really impacted my sense of safety in my body. Upside of being misdiagnosed with anxiety – I became a psychologist. While I’m glad you have therapy on the radar, please don’t feel like you need to rush. You are still so close to the trauma and have so much on your plate; it’s ok if you need a little space.
I’m thinking of you and your family, and hope things go as smoothly as possible from here out. Please keep us updated if you’re open to sharing.
I switched to half caff as I’m a pregnant lady at age 40 and I’ll think I’ll stick with it after, for heart health and also to help my longtime insomnia.
Long time listener, first time caller 🙂
Thank you Sarah for letting us in on this experience. Your reasons for writing about it are your own, but please know you are helping me and surely many others gain empathy and practical knowledge. One thing I have thought about since standing, jaw dropped, in my shower listening to you describe on Best Laid Plans what I knew was vtach, is CPR and AED training. Non- healthcare bystanders (which is the majority of people statistically, right?) can absolutely save a life with hands-only CPR and/or by having the presence of mind to look for and use an AED in public spaces. For a stranger in the grocery store or the family member in your own home. Just want to encourage all of your readers to consider taking a CPR class. *and I do appreciate that not everyone would want to be resuscitated* my next PSA will be on Advanced Directives haha.
Sending all the good vibes and good half-caff reccs your way, Sarah!
Hello Sarah!
I participated in your BLP Academy this fall and have been following your journey and praying for you. I am so sorry that you are experiencing all of this — and also so impressed by the way you are handling it all. You were always amazing and inspiring, but even more so now — the fact that you are even blogging about all this and identifying follow ups and such?! I mean you’d be justified in being a blob right now after all you’ve been thru, and you are still accomplishing so much! Now of course, as you said, it is different than your normal, so I get that it is an adjustment and do not at all mean to minimize or invalidate you so I hope it doesn’t come off that way as that was not my intention. Rather my intention was encouragement and recognition of your total awesomeness.
I thought I would share two prayers I recently learned that I think are universally applicable regardless of one’s faith tradition (or lack thereof — could just delete any reference to a deity). They are called the Litany of Humility and the Litany of Trust. In regards to the Litany of Humility especially, when I first read it I was resistant, especially as some of the phrases really rubbed me wrong as a woman, given that women in our society already so often get the short end of the stick. But it left an impact on me and I have really found it to be powerful and freeing, especially as someone who also wants to be on top of everything and who succumbs to comparison and wanting it all more than I like to admit. I think the Litany of Humily especially speaks to the whole “why me?” issue, as I know there are many times when I think “why is x happening to me but so and so doesn’t have to deal with x?” If it isn’t your thing, no worries but if you are at all curious, here they are:
LITANY OF HUMILITY
O Jesus! meek and humble of heart, Hear me.
From the desire of being esteemed,
Deliver me, Jesus. (repeat after each … below)
From the desire of being loved…
From the desire of being extolled …
From the desire of being honored …
From the desire of being praised …
From the desire of being preferred to others…
From the desire of being consulted …
From the desire of being approved …
From the fear of being humiliated …
From the fear of being despised…
From the fear of suffering rebukes …
From the fear of being calumniated …
From the fear of being forgotten …
From the fear of being ridiculed …
From the fear of being wronged …
From the fear of being suspected …
That others may be loved more than I,
Jesus, grant me the grace to desire it. (repeat after each … below)
That others may be esteemed more than I …
That, in the opinion of the world,
others may increase and I may decrease …
That others may be chosen and I set aside …
That others may be praised and I unnoticed …
That others may be preferred to me in everything…
That others may become holier than I, provided that I may become as holy as I should…
LITANY OF TRUST
From the belief that I have to earn Your love … Deliver me, Jesus.
From the fear that I am unlovable … Deliver me, Jesus.
From the false security that I have what it takes … Deliver me, Jesus.
From the fear that trusting You will leave me more destitute … Deliver me, Jesus.
From all suspicion of Your words and promises … Deliver me, Jesus.
From the rebellion against childlike dependency on You … Deliver me, Jesus.
From refusals and reluctances in accepting Your will … Deliver me, Jesus.
From anxiety about the future … Deliver me, Jesus.
From resentment or excessive preoccupation with the past … Deliver me, Jesus.
From restless self-seeking in the present moment … Deliver me, Jesus.
From disbelief in Your love and presence … Deliver me, Jesus.
From the fear of being asked to give more than I have … Deliver me, Jesus.
From the belief that my life has no meaning or worth … Deliver me, Jesus.
From the fear of what love demands … Deliver me, Jesus.
From discouragement … Deliver me, Jesus.
That You are continually holding me, sustaining me, loving me … Jesus, I trust in you.
That Your love goes deeper than my sins and failings, and transforms me …Jesus, I trust in you.
That not knowing what tomorrow brings is an invitation to lean on You … Jesus, I trust in you.
That You are with me in my suffering … Jesus, I trust in you.
That my suffering, united to Your own, will bear fruit in this life and the next …Jesus, I trust in you.
That You will not leave me orphan, that You are present in Your Church…Jesus, I trust in you.
That Your plan is better than anything else … Jesus, I trust in you.
That You always hear me, and in Your goodness always respond to me …Jesus, I trust in you.
That You give me the grace to accept forgiveness and to forgive others …Jesus, I trust in you.
That You give me all the strength I need for what is asked …Jesus, I trust in you.
That my life is a gift … Jesus, I trust in you.
That You will teach me to trust You … Jesus, I trust in you.
That You are my Lord and my God … Jesus, I trust in you.
That I am Your beloved one … Jesus, I trust in you.
Amen.
Thinking of you during this difficult time. Here’s to finding a new “normal” and hobbies that you will come to love as much as running! Sending well wishes from South Carolina!
Ugh, on top of everything you might have to give up coffee? That’s plain cruel (I hope you find a decaf/half calf alternative!). You really have a lot of adjusting to do and I can only imagine how hard that must be. I am rooting for you.
So sorry that you’re going through this! Praying for you!