In May, right after my last Remicade treatment, I shared a post with an update on my experience with having Crohn’s and being pregnant. In that post I opened up a ton about this journey and ended it with a kind of “to be continued...” especially around what my treatment would look like through the rest of my pregnancy. Since then I have received a lot of questions around what my next steps were and how things have been going since that update. So here we go....
I made the decision to discontinue Remicade for the third trimester of my pregnancy. I was back and forth about this decision for months prior to making it. I got medical input from my gastroenterologist, my OB, my high risk OB, and my genetic counselor. On top of that I also did my own research and had conversations with Matt. What it really came down to is what felt right for us. As so many things with pregnancy, I feel like this is the case.
What really surprised me was the lack of certainty any of my doctors had around the decision. They presented me with facts, some more thoroughly than others, but the decision was always up to me. I appreciate that freedom, but in this situation I really craved a professional just to tell me the right thing to do. I know there are conflicting views, which I feel like I’ve heard all of from different members of my care team, but I wanted more guidance. Especially with hearing how conflicting these opinions were, I quickly realized the lack of consistency across my care team and the reality that Matt and I would have to make the final decision.
Let me backtrack a little and say, I know you always have a choice if you take a prescribed medication or go through with a specific treatment. Usually it is a lot more cut and dry though and there is a specific recommendation from your doctor based on plenty of research and experience. With Crohn’s and other autoimmune diseases it never feels as certain, and this is even more true in pregnancy. These diseases are still so misunderstood as is their effect on the body. This makes treating these diseases a challenge and even more so when you are concerned about the health of a baby.
Originally part of the reason I started on Remicade was because it has been on the market the longest and had the most studies proving that it was safe for pregnancy. This was very reassuring and I felt pretty confident about the safety of the drug. Then when Covid came into the picture things kind of hit the fan. One of the concerns of Remicade is that the effects on the baby aren’t totally known as they pass through the placenta in the third trimester. One of the risks I heard the most was that the baby could be born immunosuppressed and it could take him a while to build up his immunity after getting the Remicade out of his system. In normal times this didn’t seem so bad. It’s not like I was going to be out and about with my newborn all the time and of course I would take appropriate precautions as I do for myself. Well, once an international pandemic is running rampant, the thought of bringing my child into the world with the potential of a weakened immune system was something I could not get behind.
I continued to gather information but the situation with Covid really pushed Matt and I in the direction to stop Remicade after my last infusion at around 21 weeks. There was talk about trying to fit one more at the very beginning of the third trimester but I decided against it. I was concerned that if the baby came early that would cause an issue and I didn’t even want that to be and additional worry we had.
Originally my OB’s were pushing me to stay on Remicade throughout the whole pregnancy because if my health was bad it would impact the baby’s health. Luckily throughout the pregnancy so far my blood work has been better than it’s ever been and my symptoms have been manageable. When I knew stopping Remicade was a very real possibility, one of my gastro’s started me on Apriso (oral pills) that are safe for pregnancy and would hopefully help to soften the blow of going cold turkey off of Remicade treatments.
As I said before, I had my last treatment between 21-22 weeks and would have been due for my next treatment last Friday if I were to continue. Over the past two weeks or so, I have noticed an increase in symptoms but nothing alarming or that would be risking for baby. I’m monitoring my body closely and my OB’s are monitoring me and baby very closely, so I feel comfortable moving forward. I’m trying to make sure I keep symptom triggering things at bay, like stress, and I am being very intentional about listening to what my body (and baby) need food and sleep wise.
Overall, what I’ve realized is that pregnancy with Crohn’s requires a lot of research and following your gut (no pun intended) just like having Crohn’s without being pregnant. There really are no cut and dry answers and opinions between professionals are often very conflicting. Having the uncertainty of an unprecedented global pandemic thrown in really shakes that up as well. We had to make the decision that felt right for the baby based on the current situation. The uncertainty of if I have made the “right” decision weighs on me very hard, but I try to remind myself I am doing the best I can and that’s all I can do.
Looking at this outside of just my personal experience, I think this brings up some gaps in the healthcare system as well as reiterates the additional emotional stress those impacted by Crohn’s and other autoimmune diseases have to endure. As far as the healthcare system, let me say that I truly love my providers and trust them so much. I don’t think the uncertainty is a reflection of them, I think the issue is the underlying lack of cohesive care that could be provided through increased communication among providers. I’ve experienced this before where Crohn’s impacts so many systems in your body, you are seeing multiple doctors, but there is no consistent communication between the providers. I don’t want an OBGYN who is an expert is gastrointestinal diseases, I want one who is an expert and delivering my baby of course! That is why there are doctors specializing in different areas, but that doesn’t do us any good if there is a lack of communication between a patient’s care team. Again, I don’t think this is the fault of my providers, I think it is an issue deep rooted in our medical system. All of the uncertainty puts more pressure and responsibility on the patient to do their own research, be the liaison between doctors, and ultimately make the final decision on treatments based on often conflicting advice.
Pregnancy with Crohn’s has been quite and adventure and one I am still going through! I feel like I say this all the time, but I truly am so thankful to have this platform to share my experiences. Throughout pregnancy I’ve leaned on online resources and communities, just as I did after my Crohn’s diagnosis. I believe there is a lack of resources about such a niche topic, but a topic that still impacts so many. Hopefully getting my experiences and opinions out there will help another Crohn’s mama who is looking for support.
Woah… how things have changed since my last post less than a month ago. Things have quickly escalated and I am writing this now from my 13th day in quarantine. As we go through this challenging time, I’ve been sharing updates along the way on my social media — some about the positive things this self isolation has brought and others focused on my frustrations around how my fellow humans are handling this pandemic. I’ve been trying my best to remain positive and manage my anxiety as much as possible as life has continued to evolve. I decided this afternoon, after my remote therapy/meditation session, that I wanted to use my platform to share some ways I have been coping with #quarantinelife.
I know this time is difficult, especially for those who struggle with anxiety or depression. Isolation can be very triggering as can living life without a set routine. In a time where it can be easy to turn to unhealthy coping mechanisms, it is more important than ever to be ready when those feelings come up. This has been a common theme in the chronic illness community, not just during the COVID-19 pandemic, but in everyday life. Due to health conditions beyond our control, sometimes we are forced to isolate. I have been able to live an active lifestyle in the past few years, but unfortunately, not all who are suffering from a chronic illness are so lucky. Now the world is getting a taste of the loneliness and fear those with chronic illnesses suffer with everyday. It makes me so sad that more people have to experience this, but we are all in this together. When I think about my darkest days of suffering and being sick, the online community of those in similar situations was one of the things that got me through it. I am hoping now that our fellow humans can now see the incredible benefit of coming together, sharing vulnerabilities, and lifting each other up during extremely challenging times.
I am no expert, but I have three habits I am implementing to help control my anxiety during these unprecedented times. The habits I am sharing are ones that are a bit out of the norm from the usual stuff you will read — exercise, meditation, walking outside — those are all things I am doing, but these dig a little deeper if you are ready to go there.
1. Different rooms for different things
I noticed myself spending all of my waking hours in my living room. My desk and computers are in there, my sofa and main tv are in there, my dogs like to be in there. It is the hub of our house, but spending so many hours in the same place day after day can be agonizing, especially when there is no separation of work and relaxation. I am making a conscious effort to have activities happen in various rooms. For example, when I meditate in the morning, instead of doing it on my sofa, I can do it in my master bedroom. When I take conference calls I can take them from my guest room. When my husband and I watch a movie, we move to the basement. If you don’t live in an environment where it is feasible for you to move around, at least try changing your space. Light a candle or put on different background music to switch up the vibe. You can even just move your chair to a different location or change the seat you usually pick to sit at on the sofa.
2. Set your intention for the day
When I was talking to my therapist, I was explaining that working from home is normal for me and I can do it well. I explained that actually being at home is comfortable for me, so I am fine with that. The anxiety inducing feeling that is coming up for me is not knowing what my purpose is each day. I have my ‘to do’ lists for work and I am knocking them out, but things are admittedly different. The world seems slower, which can be a good thing, but for someone who feels the need to always be in maximum production and self improvement mode, this is dangerous. My therapist suggested I included setting an intention for my day in my morning meditation. Basically I decide what I want to get out of the day and own it. Somedays it is going to be, my intention is rest and I want to lay on the sofa and cuddle with my dogs while we watch Netflix all Sunday….and that is okay. It can feel okay because I am choosing to set that as my intention and owning it. I realized that I naturally do this at the beginning of my work day, but my personal priorities seem to slip from my intentions when work is the focus. Now I will focus on what my intention will be outside of just being a productive employee. Will my intention to be more mindful and take an half hour break to enjoy tea on my back deck? The intentions I set will be around larger feelings than just completing daily tasks. By focusing on these intentions everyday, I can feel accomplished in my own way. I hope that this is a habit I can form and carry on once we resume regular life.
3. Do not feel guilty about sometimes focusing on the trivial things
I have so fallen victim to this mentality. These are really sad times. People are suffering, the world is in an unprecedented state, and yeah, things are really scary. I feel guilty allowing myself to think of trivial things like painting my nails or ordering something online during a time of such tragedy. I realized that this is not helpful and has caused me to just become more of an anxious mess. In order to take care of myself the best I can, I need to make sure I am preserving my mental health. Life hasn’t stopped just because of COVID-19. It is okay to laugh with your friends (via FaceTime) or order some new nail polish to boost your spirits. I cannot punish myself for what the world is going through or take on the pain of everyone else. There are folks who aren’t taking this thing seriously and who actually need to focus more on the gravity of the situation, but is you are taking the time to read this, that probably isn’t you, and you are a self aware gem just trying to cope.
I will provide more frequent updates on this COVID-19 journey via my Instagram. I hope that some of the content I share helps you through this time. As I’ve checked in with other spoonies around the world who I have met, I am heartbroken by what just the domino effect of this virus has done for their lives and health, but at the same time I am so inspired by their strength and positivity that never fades. That is why, even when it is easier to put my head in the sand and try and wait until this passes, I want to put myself out there to be vulnerable about what is going on and offer support to you all in this time. Please don’t hesitate to reach out if you are struggling. We are all in this together.
Written while wishing I was back on a beach in Hawaii.........
I just got back from the most relaxing trip I think I have ever taken. It was also the most needed vacation! Matt and I met my mom on Oahu and we spent a little over a week getting a big dose of R&R at Disney's Resort, Aulani. That is a whole amazing experience to share, but in this post I want to talk about what is lingering over our heads these days when we talk about travel. Coronavirus.
We had planned this vacation far before the threat of coronavirus crossed our minds, but of course as the outbreak and fear heightened, it was very much on our radar to consider when traveling. Especially being immunosuppressed, these are things that I have to worry about. Flying during flu season already peaks my anxiety and requires extra precautions, but a potential worldwide pandemic... yikes. We have to keep in mind that my travel decisions were made a month ago now and the virus/spread has evolved since then. I had to make decisions based on the facts I had and the advice from my doctors. My gastro gave me the green light to continue with my travel plans, since the flu still seemed to be much more of a threat. I was to still move forward with my regular precautions and things should be fine. Matt and I weighed our options and made the decision that we were still going to go.
Since I've been back, I've chatted with quite a few people who have upcoming travel plans and are in the same exact debate we were in just a month ago. Should they go or not? I am in no way a medical professional so all I have are my opinions. The kind of scary thing though is that is lot of the advice that is being given out by medical professionals, opinions. We are finally getting some hard facts or the spread and fatality of coronavirus, but without the depth of studies we have on other viruses, advice stems from opinions. That being said, you have to make the decision for yourself on whether or not you will travel. For me, we weighed a lot of things before deciding. Once we made the decision that we were going, I did everything in my power to research proper sanitation and prevention protocols so we could feel confident we were doing what we could to avoid the virus. If you are traveling in the near future and are looking for some tips, that is what this post is here for. I've done posts before about staying healthy while traveling (vitamins, hydration, etc.) but I have never highly focused on disease prevention, until today. You have probably read similar things on the CDC website, but I'm sharing the specifics on how I navigated the situation in hopefully a lot more interesting and easy to digest way.
WHAT TO PACK
Don't fail to be prepared here! It is better to have some extra items instead of being the one begging fellow passengers for a Clorox wipe. For this trip here are things I brought......
Large pack of Clorox wipes- I went for the large pack because I could use these to wipe down our hotel rooms too. Make sure to store the package in a plastic bag to avoid any leaks in your carry on or purse.
Multiple hand sanitizers - I opted for one easy access bottle on my husbands backpack and a spray sanitizer for my purse. Having the easy access one is perfect for busy locations (like the airport). The spray is super user friendly and very kid friendly since you are less likely to get a ton of extra product on their hands. They also barely have to even rub it in.
Face masks - I know there are mixed findings about whether these are effective in preventing the spread of coronavirus, but I always opt for a mask while flying during fly season. To me, being immunosuppressed, it is worth the extra precaution. These can be difficult or expensive to get your hands on now, but you can try asking your doctor's office if they have one or two they can give you for your trip. This may not work, but it is worth a shot. Luckily we always have a supply of these in our home (who would have ever thought Crohn's would lead me to possess one of the world's hot commodities?!).
Socks- I know I am usually talking about how I need my aloe infused spa socks for long flights. Well, those are still preferred but being completely serious here, you need just any pair of socks, on your feet, at all times. I will explain as we go through things.
Pillow + Blanket- BYOB. Bring your own blanket. You do not want to be asking for the pillows and blankets they give out on flights. As sanitary as you may feel they are, I am not trusting it. You know you are going to have that thing next to your face for the duration of your flight while you try to snooze, so do yourself a favor and bring your own. I found this travel pillow/blanket on Amazon for around $20. It worked out great, and now I can wash it upon returning home and use for my future trips.
GOING THROUGH SECURITY
Okay, so you're in the airport, checked in, hopefully you sanitized after using the touchscreen kiosks, and now you are entering security. I made the mistake of not taking my jumbo pack of wipes out of my bag before going through TSA. They are totally cool if you bring them, just make it easier and separate them for your other belonging before sending them through the x-ray machine. Also, PLEASE WEAR SOCKS. You are walking on a floor that so many toes have been on. Give yourself a barrier and at least wear some socks while you take your shoes off to go through security. Once you pick up your belongings make sure to sanitize your hands. At this point I also wiped down my cell phone. Those things are nasty.
Once you get on the plane and get to your seat, the real fun begins. Whip out those Clorox wipes and get to cleaning. Airlines do the best they can to clean up in between flights, but let's be real, they are not sanitizing every seat. That's your job! Make sure to wipe down the seat, the tray table, the seat belt, the seat belt buckle, armrests, your air vent, and if you are sitting next to the window, the window and the wall. I know this potentially sounds excessive, especially the window/wall part, but listen up... how many times have you caught yourself on a flight with your head against the wall while in the window seat taking a quick nap. Your face is very close to that window and that wall, okay? From what I've read, the best seat for optimal air circulation (hopefully less germs) is the window seat. This in flight positioning also gives you the least contact to other passengers which will help prevent picking up germs. So grab that seat and get to sanitizing. Also, make sure to put your mask on.
WHILE IN FLIGHT
Relax, take a nap, watch a movie. Just remember to try and keep your hands off of your face, sanitize before eating, and sanitize after coming back from the bathroom even though you've already washed your hands. Also, do not go barefoot frolicking through the plane. This is a personal issue I have with unsocked feet on planes, but it also a medical concern. Socks are a barrier between your feet and all of the germs swirling around on the airplane floor, so wear them! I still always put on shoes if I am getting up to walk to the bathroom though. Utilize your self provided pillow and blanket instead of the airline issued ones. Also, make sure to keep your mask on as much as possible (aka whenever you are not eating or drinking).
As I said before, I am by no means a medical professional, these are just the precautions I took during my most recent travels. There is really no full proof way to prevent you being exposed to coronavirus, but we have to do what we can. Even if we weren't on the verge of a worldwide pandemic, these tips would still be relevant for preventing the spread of disease in general. Now more people are just tuned in!
Immunosupressed or not, I am interested in hearing your take on the coronavirus and its impact to travel. Are you worried? Do you think the news has over hyped things? What, if any, extra precautions are you taking?
Since we entered 2020, I've heard a lot of people's New Year's goals have to do with reading. Some are trying to clock more hours with a novel instead of in front of the TV and others are aiming to use the knowledge they gain from hitting the books to help them with personal development. Either way, bravo to you for building a habit that is great for your brain and also a fantastic way to destress (at least for me!). If you follow the blog pretty regularly, you know that reading is one of my favorite ways to spend leisure time. I've worked my way through plenty of self help, fiction, and non- fiction novels over the past year or so and I'm always adding to my list of favorites for my Amazon page or for posts on the blog. Since a few friends have reached out for recommendations, I got the idea to put together some of my top picks that I would recommend to my best friends and to all of you. I broke things down into a few categories so you can skip right to the section or sections that interest you the most.
Pretty much all of these books are available as physical copies, Kindle books, and on Audible via Amazon. I've traditionally been a fan of physical copies of books, but finally made the switch to reading via my Kindle app on my iPad. While it took me a little to get used to the switch, it definitely beats lugging eight different novels around on vacations. My husband who is also a big reader has a Kindle which he swears is his most prized possession. Either way, we both give a big thumbs up to opting for digital copies these days. I also have the Kindle app downloaded on my phone, so if I get stuck in a doctors off or other unexpected situation where I have idle time, I can keep myself busy with whatever I'm reading. If reading isn't your thing, I recommend trying out Audible. You can get all of the great content from your reading list, just delivered easily through your AirPods on your commute, while you clean your house, or while working out. All of these little conveniences make it so much easier to integrate reading into our already hectic, busy, and jam packed lifestyles.
I am also gearing up for a long flight next week, so any recommendations that aren't on my list, please send my way! I love discovering new books and new authors to fall in love with.
2019 has been a year of transformation for me. Probably one of the most emotionally/mentally transformative years I’ve had. It was a fucking hard year though and I haven’t had one of these “transformative” years since 2009. A decade later I went back on a journey to dig deeper in myself to find more happiness and be a better wife, friend, daughter, sister, and hopefully eventually mom. I became more spiritual in a sense of truly believing in the universe and a higher power’s plan. I’ve reached higher self acceptance and found grace within my mistakes and flaws. I’ve developed more love and understanding for those around me. I believe in myself and trust myself more than I ever had.
2009 was the first time I was strong enough to seek a better understanding of myself. To make a fully committed effort to deal with difficult shit and better my life for the future me I didn’t even know was ahead. Making the choices I did in 2009 set me up for the year of emotional exploration 2019 gave me. And I hope the work I have done this year will set my up for the me I will be in another 10 years. The past decade has given me some of the worst, lowest, and most confusing times of my life but also some of the best, most rewarding times I’ll cherish forever and all of those have shaped me as a person. I feel like we can mostly all say that in regards to a decade, especially one that spans almost your entire 20s.
Looking at the me in 2009 - little, fierce, scared but brave at the same time, confident in the future but so unsure about myself. Then I could never imagine what my life would be today because the journey has had many twists and turns. But now looking back I see the fight and passion in 2009 me and I can see how I made it to where I am. Although this isn’t what I imagined, it is better and what I am meant for in every way possible. I am thankful for the experiences both good and bad that have shaped me these past ten years and I know there will be equally and more emotionally turbulent events that this next decade brings.
Starting this next decade I wish for myself to continue to trust in a higher power, to gracefully accept things I can’t change, to use my passion to do good for others, and to fully appreciate every little gift life bestows me. Instead of going into the New Year with resolutions and things I want to change, my goal is to be the best me I can be everyday and be confident that doing that is enough. I want to leave behind expectations of what I "should" be and appreciate every bit of who I am and who I am becoming.
I hope that as you read this, you are thinking of what you have done to make yourself proud this past decade. I mean, you made it this freaking far, that is an accomplishment in and of itself. I for someone this is an inspiration to channel their strength into dealing with some difficult shit they are going through in hopes of a better future. I hope that someone is reading this and is like YES GIRL I am with you in this journey, because the journey is a beautiful place to be.
I am so ready for the magic this next decade has in store for us and I am feeling stronger than ever as I embark on this new adventure.
The holiday season means you will, more than likely, be dashing from event to event all December long. From meeting up with friends, office parties, spending time with family, and checking everything off of your pre holiday 'to do' list, chances are you are letting your regular nutrition, fitness, and sleep routines fall by the wayside. With IBD, this can be the time when flares and symptoms can hit the hardest. In my experience, I see this happen due to changes in my routine and added stress. It is also, of course, sick season so the more you socialize the more you are exposed to potential bugs that can knock you on your butt for quite a few days. Every year, I feel like I tweak my routine a little bit and become savvier in how to keep my health in check throughout the holidays while still being able to enjoy myself.
This year I have five tips that I am living by to help me make it through this crazy busy, festive month.
Vitamins and hydration
Holiday season means lots of eating and drinking outside of your normal routine, or at least the option to. I like to indulge a little when I can. Wine night with friends that are in town, dinner out to celebrate a successful year with my team, gluten free Christmas treats..... My usual rule of thumb is to let yourself enjoy what you want, while being mindful of how they will impact how you feel. It is all about the balance, baby. And honestly, this time of year we can get a little off balance and live your best life, and you should not feel guilty. That being said, during this time of the year, proper hydration and nutrient intake can become an afterthought to all of the holiday cheer. Instead of stressing, I am making things easy by sticking to a regemine I can keep conveniently in my purse everyday. I am making sure I drink at least one packet of DripDrop ORS for dehydration relief each day (more than one for sure if I am having a few glasses of bubbly). This is also key for if my Crohn's symptoms start acting up. Even when I can get those under control, the dehydration can keep me down and out for even longer. Mixing in a packet of DripDrop ORS everyday helps to keep me on my A-game no matter what my body is throwing at me.
I also make sure I take a quality multivitamin once per day. I have been taking Ritual vitamins for the past year and a half and absolutely love them. I can feel confident that no matter what weird combination of foods I'm grabbing from our holiday potluck, at least I am getting my core vitamins everyday.
Limit your plans - its okay to say 'no'
This one took me so long to actually live by. There are so many plans happening around the holidays, but you don't have to attend every single event you are invited to. I've realized that it is better to give your all at a few events you are really excited to attend then be half checked out at a laundry list of events that you only sort of care about. I also used to always feel really bad about saying no to events I would get invited to because I didn't want to let down the host. Well, let's be real, the host has so much going on, they probably don't really care one way or another. Not being rude, but unless you are the guest of honor, it is not a big deal. And if the host is a close enough friend, they would probably want you to be relaxing at home if that's what is best for you anyway.
As part of limiting my plans I make a list at the beginning of December of all of the things I want to do/attend and then I prioritize them. By adding the things I really want to do into my planner from the start I have a more realistic idea of what else I can commit to.
Work from home if your office is sick
If there is a bug cycling through your office, do yourself a favor and if you can, work from home. So many people will try to power through their illness and bring all of their germs to work with them instead of laying low at home. As someone with a compromised immune system, this does NOT sit well with me. If I notice something is going around and too many people are dropping like flies in the office, I try to limit my exposure. Whether that means staying in my office or requesting to work from home, this ensures that I can continue to get my work done and hopefully not succumb to the office plague.
Keep your sleep schedule regular
Sleep can be tricky when your social calendar is packed. You might be out late on week nights when usually your bedtime is 9pm or you may find yourself with extra time to hit snooze on your days off. The best thing you can do is keep your sleep schedule as regular as possible. I usually try to have an hour time frame that I go to bed and wake up routinely everyday (including days off!). If I am out at an event, I always set a target time for me to say my goodbyes and call an Uber, so that I can be home in time to do at least some semblance of my nightly routine and be in bed at a regular time. Of course there are exceptions and nights when you are having such a great time, turning in for the evening sounds miserable, and that's fine, stay out! Like I said, all about balance, baby.
If you have PTO take it
I can't tell you how many times I hear my coworkers talking about all of the hours of PTO they are going to lose at the end of the year. A lot of companies have a maximum amount of PTO that you can roll over to the New Year which leaves a lot of hours to be taken or lost. Most of us workaholics rack up time all year just to keep running ourselves to the ground until December 31st then starting all over again. If you have time banked up, please do yourself a favor and USE IT. It is your time, you earned it, don't feel guilty about taking off work to refresh yourself for the New Year. It doesn't matter if you are going on vacation or staying on your sofa watching Netflix for three days, either way, you're doing what you need to do to give you mind and body a break. This will help you to feel less rundown as you tackle the mid winter months, and hopefully help to keep you a bit healthier.
I hope you all have a happy and healthy holiday season full of B A L A N C E.
Today is Remicade day which means this morning I was packing my bag and getting my comfy clothes ready for a day at the doctor’s office. I’ve said this before in posts that I try and make Remicade day suck less by making sure I have everything on hand to relax a little and feel as comfortable as possible. If I am going to be stuck in an infusion chair all day, I must be prepared.
If this isn’t your first Remicade rodeo, you probably already know this whole scoop on what you need to bring with you, but if you are just starting out on your infusion journey, take notes! The first time I showed up for my infusion I was in my work clothes with my iPhone on low battery. ROOKIE FREAKING MOVE YALL.
First I start off with what I am wearing. I always go super comfy, even if I am coming straight from work, I bring a change of clothes. I usually go for leggings or a cute pair of sweatpants on the bottom with some layers on top. I always have some type of thin material shirt or tank top with a sweatshirt or sweater over top. Usually the office is pretty cold so I love being able to snuggle up in an oversized sweater. There have been times though where blood draws or IVs have gone amuck and I’ve been stripping down in a sweat trying not to pass out, hence where the cool layer comes from. I like to rock a fuzzy sock situation when it is cold, or Ugg slippers/Ugg boots. Heaven.
I am pretty much always working while I get my infusions since my infusion days are Fridays. I make sure to bring my fully charged laptop (+ charger just in case) along with a fully charged phone. Obviously these are critical for me being able to actually do my job, but if you are lucky enough to not have to clock hours during your infusion, some key items are necessary too. I highly recommend bringing a device to watch Netflix or a read a book on. I am also a huge fan of Podcasts and Audible, so I usually listen to something while I am working. Hearing the medical beeps going off for a few hours isn’t super fun so having something else to listen to/focus on is comforting.
For listening to whatever content you choose I highly recommend AirPods. I never understood how amazing these things were until my husband got them for me for my birthday. I love that I they are wireless because you’re already hooked up to so many cords, why do we need another? I also love that I can super easily take calls from the infusion chair. AirPods have awesome sound quality not just for the user, but somehow they basically block out the background noise for whoever is on the other end of the line. I always get super self conscious when I am working from the doctor’s office because a lot of my job is taking calls. I don’t want to have to explain to whoever I am talking to why I am working while hooked up to an IV. Just not a necessary part of doing business. So that explains why I feel AirPods are so crucial.
Let’s stop here to give a big reminder to ALWAYS BRING YOUR CHARGERS. I said it before, and I will say it again.
Next thing I have got to have in my bag is DripDrop ORS for quite a few reasons. Remicade usually means blood work and always means an IV. I used to be notorious for having shriveled up, hard to tackle veins. Turns out, being dehydrated was making it worse. Well I was dehydrated because by time it was Remicade time my symptoms were flaring and, well, you know the story. Now I make an effort to handle my dehydration with DripDrop ORS the morning off and during my treatment to keep myself hydrated. It is also miserable feeling sick and dehydrated while getting an infusion. Believe me, I’ve been there before, on the brink of passing out, trying to hydrate and get your blood sugar together with an old can of ginger ale. By sipping on a big waffles vigor of DripDrop ORS, I am making sure to keep everything stable inside, so all I have to focus on is getting my infusion and getting home to rest.
To continue on the whole keeping your insides feeling good and your blood sugar normal thing, I always pack a snack. Whether I eat it or not, it is always good to have a protein packed snack on hand in case you get shaky or lightheaded. I’ve also experienced complications and delays which have kept me at the doctor’s office a lot longer than I originally expected. This means that meal times can be messed up and you can’t exactly run to the local deli with an IV in your arm. I usually opt for Bhu Keto bars, almonds, or cheese sticks to throw in my bag and snack on. These also are not obnoxious things to eat in public so I’m not disturbing my other infusion center mates.
Hopefully if you are new to infusions this will help you prep better and if you’re a vet maybe you’ll be able to add a couple of my tips to your usual list.
What do you bring for a long doctor’s visit?
This post is about something I am super uncomfy talking about. I want to put it out there and get more comfortable because whenever I’ve shared things with this community it has lead me to more connection with other amazing ladies, often going through something similar. I mentioned this briefly in a previous post, that I took the leap and started talking to my doctors about fertility. Matt has wanted a baby since the moment we were legally married (and honestly before that) and I have been the master of excuses to push it off. Through a bit of self discovery I came to terms with the fact that I was actually truly terrified to be a mom. I had spent so much time focusing on just trying to get things stabilized to get through life, that it seemed such a distant possibility that me, myself, my body, could handle actually bringing a life into this world and then taking care of that life. To be honest, as soon as Matt and I started seriously talking about the potential of becoming parents, it triggered my anxiety to an ALL TIME HIGH. It is like every insecurity I ever felt about my body physically or emotionally bubbled to the surface, trying to convince myself that I would be a horrible mom and I was not qualified in any possible way.
I’ve been working through this for the past few months. As both a recovering perfectionist and people pleaser, the thought of having a little being that I am responsible for and could potentially totally mess up feels absolutely terrifying. I mean, I am already crazy about caring for my dogs, how will we throw a baby human into this mix? Everyone keeps telling me, “You’ll figure it out”. And, yeah, I know we will. I’m resourceful and have basically played the figure it out game most of my adult life. What worries me is my body being on the same page as my brain.
As much as I know that rationally this thought is not healthy, I feel like it is my responsibility to bring children into the world for our family. I haven’t gotten this pressure from anyone else, but my own feeling guilty brain. No matter how many 'green lights' I get, somehow I still feel self conscious that something is wrong with me. Ever since I was diagnosed with Crohn’s, I have been told that pregnancy was going to be harder for me. I was also threatened with that when I was 18 years old suffering from an eating disorder. I will never forget hearing “If you keep doing this to yourself, you’ll never get pregnant and you’ll never have babies”. I get that those telling me that were worried about me and trying to scare me into ‘getting better’. Now it rings in my head every time I visit the Obgyn or see a baby in the grocery store.
I’m scared of ‘failing’ my family because my body isn’t ‘good enough’. The thing is, if a friend were to spill this situation to me, I’d tell them this way of thinking is totally irrational and they are being so incredibly mean to their beautiful body and hard on themselves. But when the dialogue is directed at yourself, somehow things always are narrated a bit differently, huh?
How do you get past the fear of ‘failure’? How do you believe in your body when you feel like it is out of your control? How can you trust this body to bring the most precious gift into the world when it is hard to trust it to make it through the work week.
I’ve been working on positive self affirmations. I’ve been living by the mantra, “You are doing the best you can”. I’ve been making lists of all of the amazing things my body can do. And I’ve been praying to the universe. It’s hard to share these fears with those close to you, because they are all so hopeful and they are the people you don’t want to let down. I’ve been following along with the journeys of strong, inspiring, and truly amazing women on Instagram. Some of them I have the pleasure of knowing and some of them, just strangers, who are brave enough to share their stories with those who need to hear it. I know that my story has barely begun and it might sound crazy to those who have been through so much that I am so initially paralyzed by fear. But this is how it is, and I’m working to be okay each day with just doing the best my body and mind possibly can.
Got a little real on this one, and I hope to feel inclined to continue to do so. Please drop me a message if you are a fellow spoonie, member of the chronic illness community, or struggling in a similar situation. Let’s stand by each other.
Photo by Jade Nikkole Photography
Okay, so if you read my most recent post on my health update, you know that I recently started seeing a new primary care doctor. So far she has been great and I am super positive about my switch. One of the things I really like about her approach, is that she really strives to see the bigger picture, instead of just focusing on all symptoms separately. This is so critical when you are dealing with autoimmune diseases since they manifest so differently in everybody and their symptoms can be tricky to pin down. I wanted to share a conversation that we had because, number one, I really liked how she approached it, and number two, this advice may be able to help other IBD sufferers. Full disclosure, I am not a medical professional, or qualified to give any medical advice. What I can do, is share my experience in hopes that it may inspire you to have similar conversations with your doctor.
Our main discussion was around a few concerns I have had over the past few months, related to weird symptoms I was experiencing. I couldn't tell if these were related to Crohn's symptoms, medication side effects, or some other issue entirely. I had been getting headaches as well as spikes in my blood pressure pretty frequently. Usually my BP runs pretty normal and stably, I've been hooked up to vital machines every six weeks for the past four-ish years so I know. I had exams, blood work, EKGs, the whole nine yards done, but no one could figure out what was going on. Everyone was assuming these were due to my anxiety, which could be the case some times, but honestly I feel like my anxiety has been more in control over the past few months than it has ever been. Things weren't adding up.
My new doctor and I started having conversations around this and we uncovered the almost annoyingly simple answer. In my frustration I ranted about how my Crohn's symptoms being better the past few months, obviously not gone entirely, but things have been under control. I went on about how conscious I was about taking care of my body when my symptoms were bad and how I don't understand why something else seems to be wrong now. Then the question of how much water I was drinking came up. Of course I make sure to stay hydrated! When my Crohn's is bad I actually HAVE TO pay attention to my hydration at all times to make sure I don't end up in the hospital. Things started to click together as I explained my diligent hydration routine. I realized that since my Crohn's symptoms have been better, my avoidance of dehydration had slipped to the back of my mind. When I was doing a physical activity or out in the sun I was always careful to pack a DripDrop packet and track my water intake, but as far as day to day, for some reason I guess since I wasn't losing as much water due to my symptoms, all was well. This is NOT THE CASE. My symptoms aren't gone completely so I am still at a higher risk of dehydration, but I was acting like this wasn't even a factor anymore.
As we pieced this together I honestly felt like an idiot. She explained how your blood pressure can be seriously impacted by dehydration and I needed to make sure that was a priority even if I was seemingly feeling fine. She was convinced that the chronic dehydration I had recently been unknowingly experiencing was the cause for my blood pressure spikes. I was cracking myself up with how crazy this sounded after I went through all of these tests and freaked myself out to no end. "I have a partnership with the best Oral Rehydration Solution company out there. I drink them whenever I work out or am outside or am sick." I was literally yelling at myself in her office. "Well start not just drinking them when you think you 'need' to. Start drinking one per day at least and two in the summer." My doctor literally just prescribed me DripDrop to fix my BP and headache issues.....
Over the past six weeks or so, I've been taking her advice and making sure I am being way more conscious of my water intake and making sure I am adding DripDrop to my water at least once per day. I also have been diligent about the one glass of champagne to one glass of water ratio rule, which I am very proud of. Go. Me. Miraculously my headaches have improved and my blood pressure has been way more normal. Wow.
So what did I learn from this story and why am I sharing it. One, I am thankful I have a doctor that actually thought of chronic dehydration instead if just trying to prescribe me an unnecessary pill. Two, sometimes the seemingly more simple answer is the right one. Three, just because you are feeling okay doesn't mean you can slack on your usual care and precautions. Last thing, I was really excited to share this story because DripDrop genuinely has helped me so much. I know I talk about DripDrop often and how it is a product I am proud to be a partner to. But I also know in the world of social media where bloggers are promoting products all the time it is hard to tell what is authentic and what isn't. I like being able to share a story like this, where you can see how DripDrop truly is a part of my health protocol. It isn't just part of an Instagram post, or a blog post. This isn't just a lifestyle product I am taking cute photos of (although, yes, I think they are very cute). This is a product that changes lives and saves lives. And I am very proud to work with them.
The incoming of summer sunshine reminded me that I was overdue for my annual dermatology appointment. I made an appointment to be seen this Friday and have a nice skin check up to make sure all is well. I never used to put much thought into skin abnormalities because the chances of it being skin cancer seemed so far fetched to me. This was seriously naive behavior considering both of my grandfathers have a history of skin cancer and in college I was visiting the tanning bed like it was my second home. Bad. Idea.
As I took more of an interest in skincare I realized how horribly I was ruining my skin by baking it in the sun. I started lathering up with SPF instead of tanning oil and called it a healthier lifestyle. Once I was diagnosed with Crohn’s, my awareness of the risks of skin cancer heightened. The more research I did, the more I understood the link between Crohn’s and skin cancer. The immunosuppressants us with Crohn’s are often on, can highly increase the likelihood of skin cancer. While the exact reason for this link is not 100% explained yet, the correlation can’t be ignored.
I started lathering SPF 50 all over my face, neck, and hands on the daily. I started covering up my scalp while on walks with my dogs. And I started spending a whole lot more time under the umbrella while on the beach. The risk of skin cancer is not worth a balmy glow I can easily get from a bronzing lotion. Even if you are not at a high risk for skin cancer, the sun is the most damaging thing to your skin. Is it worth getting prematurely wrinkled? I vote no.
All things in the table here, I am a firm believer in regular dermatology evaluations, especially if you have an autoimmune disease/ are on immunosuppressants. No matter how much you do to protect your skin now, you can never be 100% immune to the dangerous effects of UV rays, and sadly, the damage you have done can contribute to problems you may face now or in the future.
Obviously none of us are perfect. There have been days I forget my SPF and there are days I’ve spent too much time in the sun in favor of a good time with friends. I’m not saying you can never allow your skin see the light of day because, let’s get real, that’s super unrealistic. What I am saying though, is that you can do your best to 1. protect your skin and 2. do your due diligence with check ups.
Hopefully I’ll be reporting back after my appointment tomorrow with good news of no skin concerns. Until then, I wanted to leave you all with a few kick ass sunscreen recommendations. These are a few of my favorite products that infuse my love of skincare with the responsibility of protecting my skin.
Drop me a comment and let me know your SPF loaded product recommendations. I’m always in for a good new product to try.
Photo by: Madison Short
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.
Welcome to my unfiltered commentary on crushing chronic illness in your 20's and everything that goes along with that.