Hopefully I can get through this post without losing my train of thought… Brainfog is sometimes my most frustrating symptom. Consistently loosing words, names, or what I was going to say is worrisome to me – as someone who has been known to be good at remembering details. It’s something I’m often concerned is going to get worse as I age.
For me, my brainfog is always at its worst when I’m in pain and/or in a flare. It’s feels like my brain and body only has so much capacity, that everything else becomes a blur. Typically, pain will lead to painsomnia, which just makes the fog heavier the next day. Thankfully, I have developed a few coping methods to help me on days where I’m extra foggy.
Notes, notes, notes! I take notes everywhere, all the time. To-do lists keep me on track – I keep my work one on my computer and my personal and blog ones on my phone. Anytime something pops into my head, I will try to jot it down as soon as I can before it gets lost in the abyss. If I think of something important that’s work related, I’ll email myself notes. At work, I have also started asking people to email me if they request something of me in person and I can’t make note of it at the time. I also take audio recordings during some meetings – especially with fast talkers, as long as it’s okay with them. I’ve found it also helps to explain fog to family, friends, and coworkers to help them understand. My husband does what he can to keep me on track when I forget what I’m saying. Thankfully, with a reminder of what I was talking about, I can usually pick up where I was in the story or conversation. It gets dangerous when I have thoughts I haven’t yet started to get out, because then no one is there to remind me!
Though the fog can be frustrating, there are ways to help remember, even if you can’t clear the fog. I hope these tips are as helpful to you as they are to me.
March is the month of awareness for endometriosis, autoimmune diseases, and colorectal cancer. I’ve written and rewritten this post in the notes on my phone a few times. All three of these things are very important to me, so I wanted to make sure I got it right. I am affected by two of them, and the other is something for which I am at a higher risk. Between my flare this month and a little, good old-fashion procrastination, I unfortunately missed the deadline I set of completing this post in March. I hope this post can still help explain why awareness is still important – even in April!
Ever since a young age, I have had horrible abdominal pain since I was pre-menarche and equally bad cramps and heavy periods since. During a hospital stay for my ulcerative colitis, they found what looked like a cyst on my left ovary during a CT scan and scheduled a pelvic ultrasound to get a better look. It was discovered that I had not only a cystic ovary, but what looked to be endometriosis. There isn’t nearly enough research done on endometriosis and there is so much more that needs to be discovered. My gynecologist and I decided surgery for both would be the best option. Unfortunately, my surgery needed to be rescheduled twice due to ulcerative colitis flares. Finally, on Christmas break of my final year in college we were all set to remove the cyst and any endometriosis that we could. The game plan was to try and save the ovary and just remove the cyst, only to learn that the entire mass was a cystic. My gynecologist wondered if there ever was truly and ovary or just a cyst. She also found that the endometriosis was binding part of my colon to my uterus, but was able to laser the endometriosis off. It was a laparoscopy surgery done with the da Vinci machine, so though I have five scars, they are all small and three have faded well. Since surgery, I’ve had far less cramping and pain due to endometriosis, and I haven’t had a notable reoccurrence.
Autoimmune disease is also something that is very important to me, and thus, so is spreading awareness. I personally am diagnosed with Inflammatory Bowel Disease, Endometriosis, Celiac disease, and had drug-induced Lupus from Remicade treatments, but believe that spreading awareness for all autoimmune diseases is important. Though there are studies done, there is so much more that is still unknown with autoimmune diseases. Many people need to see multiple specialists before being diagnosed or set up with a treatment plan right for them. Awareness leads to the spread of knowledge and drive for research funding which leads to better treatment options and hopefully – one day – cures. American Autoimmune Related Disease Association is a national non-profit that is focused on research, advocacy, and providing patient resources for all autoimmune diseases (and is actually located local to me in Michigan!) They have great resources on diagnosis tips and having conversations with your doctor(s), as well as studies on the connection between women & autoimmunity. Great discoveries are fueled by funding and knowledge gained from advocacy and awareness of autoimmune diseases, so speak up and tell your story!
March is also national colorectal cancer awareness month. Though most IBD patients won’t develop colorectal cancer, the risks are higher for us than those without IBD. It is recommended that people with Crohn’s disease or ulcerative colitis receive a screening colonoscopy once they’ve had the disease for eight to ten years – especially if there is a family history of colorectal cancer. My maternal great-grandma died of colon cancer when I was young, so I am extra diligent and so is my GI team. I had my first cancer screening colonoscopy in January of this year, and sixteen biopsies were taken, including the removal of one polyp. I am happy to report that I am in the clear! These screenings are very important, especially as someone with IBD, and colorectal cancer is treatable when found early.
All three of these diseases are near and dear to my heart, as they affect myself and those I care about. Even though it’s April, it’s never too late to keep spreading awareness of our stories!
As I’m sure many of you understand, I never want to be in the hospital. I never get much rest, am at higher risk of infection (especially if I don’t have a private room), and would much prefer to be home with my husband and pups. Because of this, when I am in the hospital, I like to do what I can to keep entertained and comfortable. I am typically kept overnight for observation – if not longer, so I bring my toiletries from home including gluten free toothpaste and Burt’s Bees Sensitive Skin face wipes. My baby blanket tags along for the adventure, as I can’t sleep without it. As a spoonie in the 21st century, I also pack my phone, computer, and both chargers in my bag. Netflix and Hulu can help make a hospital stay better outside of visiting hours and distract from the pain. Sometimes I feel silly bringing my big bag into the hospital with me, but it’s worth it to feel more comfortable while I’m there.
Depending on how long the stay is, I have my husband bring a change in clothes and coloring books when he visits. As I said in “Keeping Cozy,” button up shirts allow easy access to my port while being much more comfortable than a hospital gown.
What do you bring from the hospital to help you feel more comfortable?
One of the first things my now-husband and I did once engaged (after telling our families) was pick a date. Since I’m on Entyvio, which typically has an eight-week infusion cycle, and we knew we wanted a fall wedding, we picked a few dates that would be in the middle of my infusion schedule. We chose this because my immune system would be stronger than immediately following an infusion, and if I were to pick up germs from either wedding guests or our honeymoon at Walt Disney World, I would have time to recover before my next infusion. Thankfully, the only thing I suffered from was additional fatigue, which I would take over catching a cold.
My husband proposed a week before I started with my current company. Since my previous company did not take me up on my two weeks, I had one week to plan as much as possible before beginning my new job. Our wedding was going to be in my uncle’s backyard right on Lake Michigan. Between this and our theme being Pixar’s Up, we had many DIY elements to our wedding. I enjoyed this aspect quite a bit, because I love crafting and it is one of my stress relievers. While you’re in the planning process, pace yourself, practice self-care, and lean on your fiancé and family/friends/support system. Some of my wedding party helped with crafts and my wedding shower favors. My husband also helped with much of this. We made our own mailbox, adventure book, Paradise Falls jug, compass escort cards, painted initials, and other items. If crafts aren’t your thing or stress you out, don’t go this route and find something else that is relaxing and cathartic to include in your wedding planning process.
We were planning our wedding while living 4 hours away from our venue and any potential vendors. If you are planning a destination wedding, I would highly recommend planning a trip to meet with your vendors before the wedding, if possible. We had a short engagement, so we only traveled once to meet with our vendors before traveling for our wedding. Luckily, my parents and other family live in the town we were being married in, which helped. We were able to much of the vetting with the vendors via phone and email prior to our visit and narrow down who we wanted to book. Our trip to my parents included a tasting with our baker, one with our caterer (who did a full plated meal of each appetizers and dinner for both my parents, my fiancé, and I), had an engagement shoot with our photographer, and a quick consultation with our florist. Though it was a busy weekend (that included me forgetting my purse that had my meds for the week at our baker’s kitchen an hour and a half away), it also made a lot of the other planning easier.
Though we planned quite a bit, and may have over planned, we still did not have a plan C. I had created binders with multiple checklists, an alphabetic list of guests to help organize the escort cards, pictures my bridesmaids had chosen as hairstyle inspiration, and sketches of where each table should go and each item on each table should go. As I said, I thought I was overprepared. Since we were having an outdoor wedding, our plan B was to use my parent’s event tent in the chance they called for rain. Instead, the forecast was calling for 100% thunderstorms all day. Thunder and lightning under a tent on the beach did not sound like the safest plan, so we ended up taking the Wednesday before our wedding off work to call different venues and locations to find something. Anything. At this point, we were even considering the library, VFW hall, or the old middle school gym – as long as it was indoors and could fit us and our 60 guests. Luckily, an event barn only 8 miles from our original location had a cancellation and was open all weekend. On our drive up north, I called all of our vendors to let them know of our change in venue. Our caterer drove out the day before our wedding to scout the new venue for setting up.
We were able to use the barn on Friday for our rehearsal, rehearsal dinner, and to set up most of the wedding decorations with our families and wedding party. They also gave us access to a condo on the connected golf course to get ready the following day. During set up, my husband and bridesmaids created a strict rule that I was not allowed to decorate and risk over-exerting myself while setting up. Though it was hard not to help execute the plans I had created, with how much pain I was in, I appreciated it. I was feeling so poorly that had it not been the weekend of my wedding, I would have gone to the hospital. The stress of final wedding items and finding a new venue last minute didn’t help. My fiancé set up a chair for me in the middle of the venue where I could instruct others in decorating by referencing the diagrams I had drawn. With the venue change, these diagrams and other items I had included in the binder helped smooth the transition, as they translated well to the new venue and helped make sure we didn’t forget anything. We loved our new venue, everything went amazingly, and we were very happy with the change. Learn from me and have some plans and ideas in place in case of emergency.
The biggest tips I have for day of is having your support system protect you from stressors, wear comfortable shoes, rest when you can, and make sure you eat! There were a few minor things that happened on our wedding day in final set up with the venue that were kept from me until after they had been resolved, and I am so thankful for that. My Maid-of-Honor’s boyfriend drove about 20 minutes to the nearest Joann Fabrics to get a new frame and also helped resolve other issues. Not needing to stress about a problem that would be resolved was lovely. If you have people who can act like buffer, it will help ease your stress on your big day. Making sure you’re comfortable is also very important, especially if you suffer from chronic pain. I wore flats with my dress and broke them in with thick socks around the house before the wedding. I didn’t even notice my shoes because they were so comfy!
Make sure wherever you’re getting ready has plenty of places to sit and rest and have anything you may need both for your health and for the wedding. During pictures and before the ceremony, I sat as much as I could and took the opportunity to conserve energy. During the reception, I took many breaks and tried to stay as well hydrated as possible. In addition to staying hydrated, I did my best to eat throughout the day. We were getting our hair done at the condo, and I was the first one to arrive to have my hair curled and pinned so it had time to set before styling. I forgot to grab food and needed to be there at 7:30am, so the first bridesmaid to arrive brought me eggs from a local café. Around noon, my mom and one of her best friends put together a cheese and fruit plater and brought gluten free pretzels and hummus for us to snack on throughout the afternoon. Once we were dressed and ready, we did pictures with me and my side of the wedding party, the first look, pictures of my husband and his side of the wedding party, all of us, and then family. After that, the whole wedding party went back to the condo to relax during the guests’ cocktail party before the ceremony. Our caterer made a special tray with a variety of the hors d’oeuvres and had one of the waiters deliver it to the condo for us. We had decided to do the whole wedding gluten free, as we did not want to take the chance of me being glutened on our wedding day. Our caterer was very understanding, took great safety precautions, and created a delicious menu. We thankfully were able to eat our whole dinner and our cake without interruption during the reception. Eating throughout the day definitely helped keep my energy up.
Lean on your fiancé and the rest of your support system during planning, prep, and the big day. It’s your day, so don’t plan anything that you and your fiancé do not want or would stress you out on your wedding day. Wear what makes you comfortable, rest, and make sure you eat and stay hydrated. And most of all, enjoy this celebration with those you love!
**Some of the photography is by Thomas Kachadurian**