If you have been following along on Instagram, you know that Baby P has made his (early) arrival! On September 4th at 6:24pm, we welcomed Maddox James Pickens into the world. We had quite an unexpected course of events through labor and delivery that got our little boy to us. Let me tell you, it was a journey. But we are here and I’m excited to share. We didn’t have a “plan” and I am thankful we didn’t because we would not have been able to follow it at all. I took a class and did research on what delivery would be like and honestly it felt like everything that happened was the opposite of what I researched. Overall, our plan was that we wanted a delivery with a healthy baby and a healthy mommy. That’s all that mattered and we successfully did that.
If you haven’t read my other pregnancy posts, here is some background. I had been struggling health wise during my third trimester after I went off of my Remicade for my Crohn’s Disease. I had a slew of issues from gastrointestinal ones to extreme fatigue to itchy skin all over my body. As I got further into my third trimester I started to feel like my body was just shutting down. It was very hard for me to eat and baby was taking pretty much any nutrients I consumed which left me in a bad spot. My whole outlook was just as long as he is fine, I can make it through. I was approved for an induction at 39 weeks to get baby out and get me back on my Remicade ASAP. My doctor wanted to let him cook as long as possible to make sure his lungs were good and functioning. Baby boy was also measuring pretty big already at my 35 and 36 week sonograms. His head was measuring over 40 weeks in the 98th percentile at my 35 week appointment! This already had us questioning the success of a vaginal delivery, but I was ready to try. I was coming in for OB appointments weekly until my 37 week appointment.
I went in for my regularly scheduled weekly OB appointment during week 37 and was already feeling dizzy, weak and like something just wasn’t right. For a couple days leading up to the appointment, I had felt like my body was just shutting down and I was having bad diarrhea. As I was hooked up to the non stress test, I started to feel a lot worse and when the doctor came to see me, I let her know that something just wasn’t right. I couldn’t put my finger on what exactly, but I know my body and something was off. My OB sent me to the hospital to have me and baby monitored and get some fluids since I was dehydrated from days of diarrhea. Luckily, Matt was able to go with me since there was a good chance I would be getting admitted at least for a bit. We hurried home to grab our bags just in case and headed to the hospital.
Once I was admitted, I spoke with the OB on call and she let me know that they were recommending to start induction. I was 37w3d so technically Maddox was early full term and could be delivered. A couple weeks prior I had blood work done for suspected cholestasis and while my results weren’t conclusive for me having it, my bile levels were off. They were concerned that the condition could progress and could be harmful for baby so between that and my Crohn’s continuing to worsen, they thought it was best for me and baby to deliver sooner rather than later.
I started on a cervix ripening drug every four hours through my first afternoon and night and by Thursday afternoon, we were able to start Pitocin. I went through the night with some contractions, but major pain in my lower back. I wasn’t progressing and we were having issues tracking and identifying my contractions. Eventually, we concluded that I was having back labor due to baby’s position which was not only extremely painful, but very hard to track. I was in a ton of pain, but my contractions weren’t reading on the monitor. At this point, I was extremely exhausted and frustrated. I broke down and sobbed in my hospital bed. I was at a loss for why my body wasn’t doing what it was “supposed to be doing” and I felt like I was failing not being able to birth my son. Matt was so sweet helping me get through the whole thing and he and the nurses reassured me that I was doing great.
By the morning, I had only progressed to 1cm dilated. This wasn’t much, but it was enough to insert a balloon foley to try to encourage further dilation. I was frustrated again with my lack of progress, but very soon after I was distracted by the pain. Almost immediately after the foley was inserted, my pain level skyrocketed. They were still unable to get a read on my contractions, but I could feel them and it was seriously painful. I was really shocked at how quickly they escalated and how painful they got. I like to think I have a pretty high pain tolerance and this was completely unbearable. I got permission for the epidural even though I was only 1cm dilated still. Anesthesia came in to get me set up with the epidural. Matt had to leave the room, but I had my two amazing nurses to help me out. I was nauseous from the pain and shaking, so staying still for the epidural placement was really difficult. They were having issues and kept hitting nerves that hurt the right side of my body so the process took longer than expected. I got really sick and started throwing up as they were finishing up the epidural placement. I couldn’t move so my nurse just had to stand there and catch my vomit. It was miserable. Matt was allowed back in the room and finally, the epidural started to kick in. I spent the rest of the morning into the afternoon pretty comfortable, but still with no progression.
After another day with no progression, I was incredibly frustrated, in pain again and just wanted to figure out how we were going to get this baby out. I asked to talk to my OB around 5pm which I was so happy I did. I was almost in tears begging for a plan. I couldn’t go through another three days of this. She let me know that a c section was definitely an option that I should consider. My body wasn’t responding to the Pitocin, baby was in a weird position and he was already measuring big. She couldn’t technically tell me what to choose to do since the situation wasn’t an emergency, but it was clear the c section seemed like it was best for us. I had time to discuss with Matt. I had the choice to continue trying to push through for vaginal birth, but I was already so exhausted and there was no promise he would even engage and be able to be born vaginally in the end. We walked through any additional potential risks (other than the usual risks associated with a c section) and there was no increased risk for baby so we told my OB we’d move forward. She said to give her a half hour and we could have this baby before shift change. I was shocked at how quickly things went from zero to 100. It seemed like everything else we had to try for 12 hours before any decision was made. All of a sudden everything was a blur of nurses and the anesthesia team prepping me for surgery. Matt had specific instructions on his duties and basically my job was to just lay there and stay calm. When I was prepped and ready, they wheeled me back to the OR where I would get setup before they let Matt in for the procedure. The epidural medication was making me feel really strange and once I was strapped down to the table, I felt like I couldn’t breathe even though everyone assured me that I was breathing. I was so nervous and overwhelmed. Everyone kept trying to calm me down and tell me to just wait to hear my baby cry and focus on that. Matt was brought in and put behind a big blue cloth and the procedure started. I felt pressure which wasn’t painful, but just strange feeling. Everything was fine until they hit what I was told was my bladder flap (?). I started having very intense nerve pain, actual pain not pressure. The pain was horrible and the anesthesia team was injecting me with more medication and using topical numbing spray as well. Nothing was working, but everything had to (painfully) continue. All of a sudden, baby was out, but was having trouble breathing. I didn’t hear him cry which worried me because that was the one thing I was waiting for. Matt cut his umbilical cord and got to see him for just minutes before he was taken away to the NICU. I was panicking so the anesthesia team injected me with anti anxiety medication that really knocked me out so that they could sew me back up.
The next bit of time was a blur until we were back in our room and a doctor came to give us an update on Maddox. He was in the NICU, but fine and breathing. His lungs had some trouble on his way out, but he was sorted out and would just need some monitoring. We were able to visit him after a couple hours, each separately because of Covid, but after about five hours he was brought to Matt and me to stay for good. We were finally all together as a family.
We spent the next two days in the hospital while I recovered and the doctors monitored Maddox. After some pleading, we were able to go home Sunday afternoon instead of waiting until Monday. We were so ready to get out of there after we hit our fifth day.
The scariest moment of my life was when I didn’t hear Maddox cry when he was born. In the moment, I was so focused on figuring out what was happening that the impact didn’t set in. Especially with being in a drug induced blur afterwards, it took me a while to process the whole situation. At first, I pushed it out of my mind because he was fine and we knew we were so lucky. The first few nights I started having flashbacks to that moment and nightmares that would have me waking up in panic. I didn’t realize how deeply that moment affected me. I am still processing it and cry when I tell people the story. I’m just so thankful that he is healthy and here at home with us.
Since we’ve been home I’ve gotten questions about delivery, a few of which I’ve heard several times. I wanted to make sure to address those as part of the birth story as well.
How was delivery different because of Covid?
Delivery wasn’t really different which was great. Matt was able to be there with me the whole time. All of the medical staff had ample PPE and we felt very safe. We had our masks on while traveling through the halls but once we were alone in our room we could take them off. Since I was having diarrhea for days leading up to being admitted they did have me listed as a potential Covid case. I got tested and within two hours got the negative results back. The biggest way that Covid impacted us was not being able to have additional support people come to the hospital. I always thought my mom would be with me when I gave birth so getting over that was hard for me. The c section threw us for a loop because someone had to be up with Maddox 24/7 since he wouldn’t sleep in the hospital crib. Due to the c section I couldn’t get out of bed by myself so I wasn’t able to change his diapers by myself and even positioning to feed him myself was difficult. Matt had to be on call basically the whole time we were in the hospital to help with anything Maddox needed (or I needed!). This meant very little sleep for him and a couple rough days.
How did my Crohn’s affect delivery?
The main issue my Crohn’s caused was actually having to have me induced early. During the induction it was hard to tell the difference between my Crohn’s pain since it was bad when I was admitted and the contractions. I really struggled to articulate the difference to nurses and eventually just started really second guessing what I was feeling. After I gave birth I started feeling better pretty immediately. My appetite was back and I was able to start eating without pain. I was surprised with the immediate relief and I am looking forward to getting back on Remicade to hopefully continue feeling better.
How was Matt?
Matt was amazingly supportive and comforting all through delivery. He made me laugh when I was in pain, rubbed my back, and got me good snacks. It was a long time for us to be in the hospital without help from any other support family members and barely any sleep. I 100% could not have done this physically or emotionally without him and I’m thankful he was there with me every step of the way.
I can’t wait to share more about our lives with Maddox and how parenthood has been for Matt and me. Right now we are overwhelmed with love and emotions. We are taking in every second of our greatest adventure yet. I’m happy I was able to share the details of Maddox’s birth story with you all. I have been very open about everything I have went through during pregnancy so I wanted to be equally as open about this. If you are a mama to be, my advise to you is to not get too stuck on a plan. As long as you and the baby are safe and healthy that is the important thing that matters! If you would have told me two weeks ago that this would be my story I would not have believed you for the sheer fact that I couldn’t even fathom having the strength to push through the ups and downs, long days/nights, and overwhelming emotions. Well, we did it. As a woman and as a mama your body and mind are capable of truly amazing things. You can do it!
I want to share my experience, not to provide a solution, but to provide an honest perspective that maybe you can resonate with. For years I have been interested in the correlation of digestive diseases and eating disorders, specifically the lack of dual diagnosis holistic treatment options. Throwing pregnancy into the mix is a whole new game that has me digging even deeper based on my personal experience. How do we deal with the mind fuck of weight gain and body changes while in recovery from an eating disorder? On top of that, how do we manage dietary restrictions or triggers from a digestive disease in addition to the restrictions and symptoms already brought on by pregnancy? Again on top of that, how do we deal with the emotional triggers that are drudged up by these changes and the added pressure of supporting a new human life? There are a lot of questions I want to explore, but right now what I have is my story and how I have navigated it thus far.
A struggle for me in my pregnancy has been eating, specifically what to eat and how to eat enough. My background doesn’t provide the best foundation for a great relationship with food in general, but because of that I’ve worked my butt off to get to a good spot. For those who haven’t read my other posts,I struggled with an eating disorder and then on top of that my Crohn’s diagnosis fueled additional struggles and triggers. I remember in eating disorder treatment, being there with other women who were struggling with how their bodies changed during or after pregnancy. When I thought of having kids, I always braced myself for this new reality.
When I figured out I was pregnant, all of my healthcare professionals who knew my background immediately began asking me how I felt about the weight gain and my body changing. It was so early on I really didn’t have any issues, plus, I hadn’t gained any weight.
During my first trimester my digestive system was a complete wreck. I had nausea that would never go away. I would try to force myself to eat and just ended up gagging instead, unable to get anything down. My new growing baby was messing with my intestines which brought on some new Crohn’s symptoms. Things were a mess, but it was trimester one so I figured it was par for the course.
At my 12 week appointment, my OB brought up that I had lost a significant amount of weight. I was pretty caught off guard by this since I try to refrain from weighing myself at home, as that is a trigger for me. I also didn’t understand how I had lost so much weight when the only things I could stomach when feeling up to it were gluten free cupcakes and Lucky Charms. We talked about it, but it wasn’t a huge concern yet since I was hopefully going to graduate out of the nausea soon. As I left the office I remember feeling a pang of guilt because was actually proud to have someone concerned about my weight loss. That brought me back to the time when that kind of feedback fueled me. I didn’t necessarily feel guilty for having this thought. They happen and you live with them and move on. I felt guilty because I wasn’t trying to lose weight. I was doing everything in my power to give my baby all of the necessary nutrients to grow. I felt like I was failing and having these thoughts made it worse.
My doctor seemed pretty confident that my body would sort itself out over the next few weeks so I tried to push the worry from my mind. The main struggle I was having was the food that I was craving, I know I couldn’t have because they would trigger my Crohn’s. Things like donuts, waffles, and sandwiches are always a no go for me because of the gluten (yes you can get them GF but no where near the same). I worked to find gluten free options but a lot of those are heavily processed though so that brought in more concerns of messing with my digestive system. I also felt shame for relying on processed foods since I was supposed to be giving my baby the best nutrients. I felt like no matter what I did, I was doing something wrong. Everyday I woke up in a stress fog of what the fuck do I eat today… what the fuck CAN I eat today. I also was balancing the regular pregnancy restrictions on top of those to save my digestive system. For example, I was disgusted by meat and could only stomach seafood, but I had to limit how much seafood I ate. I was seriously struggling to get enough protein.
During this time when I was going through my food crisis, we were also going through a global pandemic. Over these weeks I just mentioned, I also had to relocate from my house, live apart from my husband, and wasn’t able to go out in public to grocery shop for myself. This added a whole new layer onto the problem. I know this part of the situation is not relevant for everyone, but I felt it worth mentioning because it had a big impact on my life at the time. I was out of my routine, I was stressed, and I was just trying to get by. This triggered some increased Crohn’s symptoms to even further complicate things.
When I saw my doctor again, she brought up the lack of weight gain and actually more weight loss. I walked her through my struggles and she basically told me to just eat whatever I can. The baby will be fine if its McDonalds fries or a vegan smoothie bowl. He just needs to get fed. This made me feel better about what to eat, but didn’t change the fact that I rarely felt like eating. (Quick side note here: my doctor did prescribe me anti nausea medication, but it made me so drowsy I could only take it in the evenings. I would pass out immediately so while it is great for sleep, I can’t eat while I am sleeping.) Another issue I had was my natural reaction to not eat when I was having Crohn’s symptoms. Over the past however many years, it is like I have been conditioned to avoid that pain. My stomach hurts, naturally I stop wanting to eat to avoid the pain. In those situations I revert back to liquid or soft diets until my inflammation improves. I knew my child would not be okay if I spent the next 6 months eating chicken broth and popsicles. I mean I would not even be okay if I had to do that. The discomfort I was feeling also just caused me to not feel hungry almost ever. I never thought I would be this person, but I had to remind myself to eat. I think this was escalated by me working from home and being in an environment where there was no designated lunch hour where everyone is grabbing something to eat together. I could work through the day and not even think about lunch.
I worked with my doctor to come up with a solution of supplementing my diet with Ensure shakes. These were easy for me to get down and digest, plus they would help with my protein intake. Now I want to pause here for a second. I know there are people reading this that will be mentally shaming me for not choosing a natural option or not creating a protein smoothie for myself at home, blah blah blah. Look, this is what worked for me and my life so that is that. These have been a lifesaver for me throughout this pregnancy. Of course, I don’t just drink Ensure, but knowing I have that as a safety blanket has allowed me to relax and listen to my body more on what it actually wants. It is pretty funny to me that I have seen Ensure as such a helpful tool. When I was in eating disorder treatment it was the bane of my existence. I would (not electively) drink four of these a day on top of my meals to get back to a healthy weight. I swore I would never touch them again after treatment, but now look, they are helping fuel my pregnant body and help my baby grow. Oh how the tables have turned.
My nausea and discomfort subsided a bit for the latter part of my second trimester and a quick bit of my third, but are now back in full force. I also am feeling the effects of being off of Remicade this trimester so that has added some more turbulence to the situation. I am struggling to identify which symptoms are a result of pregnancy or a result of Crohn's. Right now the cause isn't necessarily my worry, it is how I am going to make this work for the rest of the pregnancy. I have gained weight which my doctor was pleased with and it really hasn’t bothered me as much as I was worried it might. I haven’t gained a ton of weight, but enough to be on track. I am told I should feel “lucky” that this is the case. Yeah, I guess I feel lucky, but I also feel ashamed that this has been and continues to be such an uphill battle. I can’t help but wonder, how would I feel if this wasn’t the case and I did have a normal weight gain during this pregnancy? Would things feel easier or would other feelings be triggered?
To be really honest, I have had countless breakdowns crying on my sofa frustrated about food over the past 8 months. I’m in pain, but I need to eat, but I don’t want to eat and everything I actually might want will make me sick so then I’ll feel worse, but then baby needs nutrients but if I’m sick that hurts him too so what the fuck do I even do. There have been lots of tears and lots of my sweet husband showing up with ice cream, one of the only things I can almost always stomach. He doesn’t understand necessarily what I am going through, but he makes the effort to help in any way he can which is more than enough for me.
It is difficult to unpack all of the emotions that are a part of this journey. I reflect daily on how I am doing and have an honest check in with myself to make sure I am not drudging up old patterns of thinking. It’s hard, but I am confident in the work I have done and the strength that I have. This situation has forced me to revisit painful thoughts and walk through guilt and shame and I’ve decided that is okay. Pregnancy is not a mutually exclusive event and we are still handling other things, physically and emotionally as we go through it. At the end of the day, I think we need more answers on how to support pregnant women in these situations but I don’t know if those solutions are coming anytime soon. This highlights even more the importance of taking care of your own mental health as you prepare for and go through pregnancy. Find others who are going through the same thing, see a therapist, rely on your support system; do whatever you have to do, feel what you have to feel, and most importantly know that it is okay.
f you or someone you know is struggling with an eating disorder, please check out the NEDA website for details on resources and treatment options.
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?
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.
Next week kicks off Crohn’s & Colitis Awareness Week (December 1-7) and I have a few fun things up my sleeve to celebrate and raise awareness. To kick things off, I’m excited to share some details about a live Q&A session being held by Nori Health. If you are an IBD sufferer and haven’t checked out Nori Health yet, first off, definitely do so. They are an awesome online resource to help with managing the physical and emotional impacts of IBD.
Their resident health coach and nutritionist, Lisa Booth, is hosting the webinars next week and focusing on nutrition and pain management while dealing with IBD. Lisa has coached IBD & IBS sufferers for years in her work for Ginger.io, 8fit and now Nori Health. She understands the challenges people with a chronic disease have to deal with, and helps them discover habit changes that promote an optimal quality of life. During Awareness Week, she is trying to make as big of an impact as possible by bringing the community together to answer questions and provide help.
Events that focus on both community and education are always my personal favorites because they provide connection and value. Nori’s focus on providing an optimized life with IBD in all facets, from physical wellness, to mental health, to social life, makes me bought into their mission even more.
I am so much looking forward to the webinar next week and it is totally free to sign up so you can join me. Click here for the sign up link and note the schedule below. Space is limited so if you’re interested, make sure to sign up ASAP!
Monday, December 2nd: Live Webinar “Managing Pain Through Nutrition”
Monday, December 2nd - Friday, December 6th: The online Q&A is open! You can ask your questions online and Lisa will provide answers.
Friday, December 6th: Live Webinar highlighting and answering the top questions received throughout the week.
I hope to chat with you all as we go through next week and continue to celebrate our community of warriors that fight this disease!
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
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.