Brainfog & Painsomnia

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.

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Staring out into the fog that fills my brain

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 Awareness Month

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.

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My oophorectomy scars 4 years after surgery

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!

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Baby Lauren deep in autoimmune research

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!

Caring for a Spoonie

As many of you know, Lauren normally writes a post every Tuesday, however this week has been rough.  Because of this, I offered to help and write something for her – creating Alex’s Caregiver Corner, where I will be contributing semi-regular posts. Today’s post is about caring for a spoonie and the adventures (or misadventures) that that can bring. Life with a spoonie is always interesting, as it is hard to predict what will come day-to-day and you must be flexible and understanding.

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Day-to-day life for spoonies, and those that care about them, is an adventure all its own. I do not know what to expect when I wake up every morning. Will today be a bad pain day? Will Lauren have the energy to get out of bed? What will she be able to eat today? These are all questions that go through my head every morning. I try hard to get a routine and make sure I am prepared for anything that comes up. During the week, I will wake up early to take care of the dogs, prepare breakfast, and get everything ready for our days. I work hard to make sure Lauren gets to rest and recover as many spoons as possible for the day. On the weekend, I make sure she can sleep in as late as possible and gets as much rest as possible. I will handle much of the house work, so she can use her spoons on something fun that she enjoys.

When caring for a spoonie, you may find yourself taking on everything out of love. You want to do the best you can to make sure they do not need to worry about anything. This is a noble endeavor, but a futile mission. The fact is, you are one person and can only do so much. You have your own tasks to deal with like a job, yard work, or general house work. Make sure you take time for yourself, as well as care for the person you love. It is a balancing act that can be very challenging, I can say that I have not even found a perfect balance after 3 years. What I have learned is that you need to practice self-care both mentally and physically. Find things you love and make sure you find time for those, sleep in once in a while, spend what time you can with friends, and most importantly reach out for help when you need it. Also, make sure you enjoy the little things, when you can, with the person you love.

A spoonie’s life is not easy. They can miss out on a number of things because they are sick, too weak, or are in pain. It can be just as challenging for a significant other. You can get lost in a cycle of care and recovery that can engulf your life, if you are not careful. Take time to enjoy the small things with the person you love. Lauren and I enjoy baking together, coming up with new sewing projects, watching television shows, or going to a museum. Recently, Lauren and I enjoyed a wonderful day at The Henry Ford Museum where I wheeled her around and we talked about Disney movies while we learned about the animation process for Pixar. I could not imagine a better way to enjoy the day! The two of us needed the time together after a long winter avoiding the flu and colds.

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Meeting Dug & Russell on our honeymoon

My final advice to anyone who cares for and loves a spoonie is to be understanding. You cannot always see the pain or weakness, and you will not always know how to help, but you can be understanding and listen to them. They will tell you what they need and need to know that they can trust you to believe them. Spoonies can be ignored and dismissed by so many, so what they need most from you is your support and understanding. When they are too weak to get out of bed, help them by making breakfast. If they say that they are in pain, they really are in pain. If they tell you that they need to go to the hospital, get your butt in the car and drive them. Most of all, when everyone around them dismisses their pain and symptoms, even doctors, listen to what they are telling you and fight for them. You are their rock and support, the person they rely on to help with day-to-day tasks, and the person who is there when doctors give up.

Caring for a spoonie can be challenging, but it is a labor of love. Lauren is the most important person in my life and caring for and helping her every day is done because I love her more than anything. Even through the all of her illnesses and the days she cannot get out of bed, we still enjoy every second together and share everything. Every day is full of love and laughter. I know on my worst of days, she can make me smile and when she is in terrible pain, I know I can make her laugh and at least make her happier. When we fall for a spoonie, we know what we are getting into, and everything we do is because we love and care about them. They are the most important people to us and need our full support, care, and understanding.

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Paradise Falls at The Science of Pixar Exhibit

#IBDAdvocacyTag

Megan from The Front Butt Youtuber channel started the #IBDAdvocacyTag, so this week I am answering her five questions to help spread awareness & challenge you to answer them too!

What form of IBD do you have?

I have ulcerative colitis – specifically ulcerative pancolitis, meaning my entire colon is affected by the disease.

Why is IBD advocacy important?

IBD advocacy is important in helping to educate others to bring a better understanding.  A great example is with my team at work.  Though my colleagues were supportive off the bat, the more I tell them about IBD, my other diseases, and how the conditions affect me specifically, the more supportive they are.  The more awareness we can provide about IBD, the more understanding people can be.

Awareness and advocacy also can bring advancements in treatments and eventually a cure.  The medicine I am currently on for my ulcerative colitis was not available when I was first diagnosed.  Everyone’s disease is unique to them and the medication that could help someone else could still be in trials or not even thought of yet!  The more IBD patients speak out and participate in studies, the more research will be done leading to better treatments and the closer we will be to a cure.

Describe a socially awkward moment with IBD.

The first story that comes to mind occurred when I was working as a manager at a restaurant on my first shift after being hospitalized.  The General Manager of the restaurant and I were standing at the “seating chart” podium while guests were standing and sitting in the lobby waiting for tables to open up.  Loudly, he begins to ask me about my “irritable” bowel disease and how my “irritable” bowels were.  Super weird conversation since I wasn’t that comfortable with him, only made weirder by the ten other strangers in the lobby.  This was earlier in my disease when I wasn’t as comfortable discussing it as I am now, so I awkwardly let him know that the “I” stands for “inflammatory” and just kind of shrank in size and stature, not saying anything else.  Not my proudest advocacy moment, but it does lead into the next question…

What is a common stigma you run into?

The most common thing I run into is people thinking IBD is the same thing as IBS.  I’ve had people who have/had IBS tell me that theirs improved by eating better and managing stress, and I would be cured if I did that.  Though there can be food triggers or foods to avoid and stress doesn’t do anyone any favors, IBD is so much more than that.  As an autoimmune disease, IBD is our bodies attacking their own (what was at one time) healthy tissue.  When I encounter this misconception, I take the time to explain the differences and share my IBD story.

What do you want other people to know about IBD?

As I said earlier, everyone’s disease is unique and it affects people in different ways.  A treatment that worked for one person might not work for another.  There are different factors that go into everyone’s IBD symptoms and it is not fair to hold everyone to a single standard of what it looks like to have IBD.

The Agony of Clostridium difficile

Clostridium difficile (C. diff) typical comes on after normal gut flora is destroyed or altered by antibiotics.  It grows and multiplies – overpopulating the bacteria in your intestines.  C. diff damages cells and mucosal, triggers inflammation, and forms a yellow plaque over the damage.  Common symptoms are fever, cramps, abdominal pain, and uncontrollable diarrhea.

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Since I didn’t have a job lined up upon college graduation, I moved 4 hours upstate with my parents.  A few weeks after moving, I was admitted to the local hospital due to a UC flare, where they tested for C. diff among other typical labs.  Since I got worse over the following days, they called my GI downstate and decided to retest for C. diff – which returned as “positive” meaning I likely became infected in the hospital.  Since I hadn’t been on antibiotics in the last year, my doctors and I suspect it had something to do with how my body and my flora was reacting to Humira.  Having Clostridium difficile colitis and an ulcerative colitis flare at the same time is the second worse pain I’ve experienced, just below the pain I experienced from drug-induced lupus on Remicade.  During this week-long stay, I was hooked up to a pain pump with morphine and given steroids – too much at first, but I will cover that in another post.  The doctors and nurses at this hospital worked with my care team downstate as I was not established with a specialist in the area yet.

At its worst, I was going to the bathroom 40 times a day.  Most of the trips were between 3am and 8am – where I was running back and forth.  This resulted in the second accident I had where I pooped on the floor on the way to the bathroom.  Because I was embarrassed at the time and also knew how contagious C. diff is, I cleaned the mess up myself the best I could and hopped in the shower.  In retrospect, I am not embarrassed and should have asked for help, but this was a low point for me at the time.  Because of my frequent and numerous bathroom trips, I ended up losing 30 pounds within a week and a half and was extremely weak.  They began me on IV vancomycin and discharged me with a prescription for Flagyl after a week because they weren’t able to do much more for me.  I was told if things worsened when I got home, I should go to the larger hospital the next town over.

C. diff & Einy

Later that day, things took a turn for the worse and I ended up in McLaren Hospital.  The ER doctor who was assigned for my care was extremely rude and initially refused to treat me and admit me since I did not yet have a GI I was established with in the hospital system – even though I had just been in the hospital for a week and instructed to come there.  This is the first time I had ever encountered this as I had always been assigned a specialist in the hospital if I didn’t yet have one.  After some pushing, he ended up giving me IV fluids and potassium (since my levels were low) and then discharged me.  If you’ve never had a potassium infusion before, you are very lucky.  If it’s not mixed with enough saline, it can really burn.  Since I was turned away at McLaren Petoskey, I returned to the smaller hospital and they continued to manage my pain and switched me from oral to IV Flagyl and potassium.  They kept me for about another week and I also had a colonoscopy during this stay.

My GI downstate was still working with my doctors up north, but during my second week, he said he would no longer do this.  I was told if I wanted him to still be part of my care, I would have to move back downstate.  I was sent down with oral/liquid vancomycin and potassium powder mix, and I moved in with my grandparents.  I was still up from 3am – 8am running to and from the bathroom every day.  I remember watching The Night at the Museum (the original and Battle at the Smithsonian), Princess Diaries, and a lot of Ace of Cakes on repeat during these mornings as something to distract me from the pain.  My grandparents ended up taking me back into the hospital after a few weeks, and I still tested positive for C. diff.  I was admitted for just under a week.  I was given IV Flagyl and had another colonoscopy.  Though my C. diff wasn’t gone, I was starting to improve a bit and I headed back up north to my parent’s house.

When I returned to my parents, I became established with a GI out of McLaren hospital.  A few weeks later, I went back in through McLaren’s ER.  I had the same doctor as the first appointment, and he apologized for his behavior in my first appointment.  He gave me IV fluids and potassium again, and they admitted me.  During my stay, they set me up with an infectious disease doctor who did consults with me during this week-long stay, during which I did yet another round of IV vancomycin.

Once I was discharged, I saw the Infectious Disease doctor in her in the office to discuss the option of a fecal transplant and retest after Flagyl.  I still tested positive so they had me continue Flagyl, and we got the ball rolling for the stool transplant.  My cousin who lived nearby agreed to be the donor, and she had to go through multiple tests to rule out any diseases she may have that could be passed to me – HIV, hepatitis, infections, etc.  Though the results had come back and she had been given the green light, there were roadblocks in getting the procedure scheduled.  Because of this, I ended up back in McLaren hospital.  I was admitted and my gastro came to see me.  I asked for my infectious disease doctor to come do a consult as well, but she straight up refused.  She finally agreed to talk to me on the phone and had the gall to tell me that since I had C. diff for almost four months, what’s the problem in continuing to treat the pain while waiting another two weeks for my transplant.  Boy, did she hear it!  It wasn’t as if I had been leaving it untreated or refusing care this whole time, but I had been in the hospital six times and on six rounds of antibiotics.  This infection combined with my UC had left me with very minimal quality of life.  After pushing, she was able to get me scheduled for the next week.  They also let me stop taking the Flagyl that was making me feel sick, which I was thankful for since it wasn’t helping anyway.

Day of, I picked up my cousin’s sample and took the stool and the cheap blender I had purchased for the occasion and traveled to the hospital.  A NG tube placed by radiology – this is the first time I had one.  (A NG tube is through the nose then threaded down past your stomach to the beginning of your small intestine.)  There was lots of gagging and dry heaving while they placed the tube.  I threw up when they pushed the fecal transplant – I couldn’t taste it or anything.  It was just the feeling of the push.  The fecal transplant works by replacing the bacteria in your intestines with healthy flora.  From the first day into the hospital to the date of my fecal transplant was exactly 4 months.  I was thrilled that my C. diff cleared up completely within 48 hours after the fecal transplant.  If I ever get antibiotic resistant C. diff in the future, I would definitely push for this earlier in the process.

Wedding Planning with Chronic Illness

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.

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Painted initials

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.

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Clay “Carl & Ellie” chair cake toppers

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.

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Original Venue

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.

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Actual Venue

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.

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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!

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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.

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Resting and eating pretzels

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!

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**Some of the photography is by Thomas Kachadurian**

The Great Bowel Movement

There is another non-profit I wanted to highlight that is very close to my heart – The Great Bowel Movement.  It is an IBD and ostomy focused non-profit focused on empowering patients to start conversations and educate others.

The Great Bowel Movement was founded by Megan Starshak & Andrea Meyer in 2010.  Both women have Inflammatory Bowel Disease, ulcerative colitis and Crohn’s disease (respectively), and met at Camp Oasis – a summer camp program established by the Crohn’s & Colitis Foundation.  After establishing a bond and becoming friends, they created GBM, which is run by volunteers, a collection of patients and caregivers, who are equally as passionate about this movement.

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The organization started with the shirts – Andrea’s idea and Megan’s design – as a way to start conversations, empower patients, and make an invisible illness visible.  When people ask about the shirt, an opportunity is presented to share your story of how IBD affects you – it’s a tool to increase awareness.  As I mentioned in “Changing the Conversation,” my “Ask Me About My Colitis” shirt was a great resource in helping me educate my co-workers on one of my chronic illnesses and why I was taking the extra precaution of wearing my Vogmask.  With my first shirt order, I also received two pins, a bathroom card, a “Mad Libs” style IBD elevator pitch, and information for caregivers.  I wear the two pins on my coat, which have also started conversations and education.

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They also publish articles and provide resources and tools to patients and caregivers.  Though their website is in the process of being redesigned, they will be bringing back the content and resources along with new posts when they launch!  One of the new posts is a guest blog I wrote about going through the job search and interview process as someone with a chronic illness and deciphering your benefits package – a piece I’m very excited for you to read!

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As they say on their website, “We all have stories that matter.”  This is one of the things I love most about GBM – they foster a community where we can feel comfortable sharing our stories and experiences with each other and educating those who have not yet heard of IBD.

Changing the Conversation

Being on multiple immune suppressants, especially in a year where there are so many flu-related hospitalizations and deaths, I work really had to control my environment and limit my exposure to germs.  Even though it takes extra spoons, I always wipe down my desk, phone, and chair at work each morning and at any time it may have been “contaminated” throughout the day.  I also shower when I return home from work or other outings.  Because of this (and my health & fatigue), I am thankful for my work-from-home days and being able to stay at home most weekends, as it gives me a chance to rest and recover from the week.  As I’m sure is the case with many fellow spoonies on immune suppressants, anytime there’s signs of an infection, my doctor has me go to the hospital for a slew of tests, and I am unable to take my medication until I’m in the clear.  There have been cases where there was no infection, but I was still unable to take my medication while we waited for tests to come back.  Though I fully understand this, not taking my methotrexate definitely worsens my symptoms and pain.

Thankfully, my employer is incredibly understanding.  My supervisor is an amazing mentor and since she trusts me and my work, she has allowed me to work-from-home 2 days a week since my health has worsened this winter.  This self-care has been so helpful and conserving this energy has allowed me to increase the quality of my work.  She is also understanding when fellow employees are sick and allows me to work-from-home to protect myself.  Last winter, a colleague on my team was sick when she came back from the UAE.  My IBD specialist was very concerned and wrote a note that I should be working from home for 2 ½ weeks to protect myself from infection.  Though the note helped, my director was very understanding and respected this anyway.

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Earlier this week when I was remote, a co-worker I share an office with notified me that someone had been coughing near my desk, so I could take proper precautions when coming in the next day.  He also offered to wipe down my desk after the coughing and again before leaving for the day – which I totally took him up on!  With the flu and other winter colds circling around, I was nervous returning to the office the next day, but it was a necessity.  Another precaution I take is wearing my Vogmask, though I had only worn it once before in the office.  I typically used it for hospital trips, doctor’s office visits, and the occasional errand.  Because the next day was pay day and passing out checks is one of my responsibilities, I knew I would have to take this extra measure for my health and safety.  Though I was nervous of how team members might react or what they might say, I would much rather wear a mask than catch the flu that is going around this season.  I only encountered a handful of employees the previous time I wore it, and I received multiple questions and comments.  Because of this, I was a bit self-conscious going into the day, as I knew I would be interacting with all of our company’s employees.

Though I was nervous, I realized this was a moment I could embrace as a chronic illness advocate and use it as an opportunity to change the conversation.  For a long time, my immediate team and a few work friends were the only ones who knew of my health hurdles.  In the past 6 months, I’ve become more open and vocal about my story and experiences.  Along with my Vogmask, I put on my “Ask Me About My Colitis” shirt from the Great Bowel Movement, whipped my hair into a Katniss-esque braid, and prepared for my day.   Many people genuinely were concerned about my health – thinking I had caught the flu.  When asked about my mask, instead of being ashamed, I was able to educate people about IBD and other autoimmune diseases and how the medication I take weakens my immune system.  Everyone was extremely supportive, commented on the cute pattern, and some even said they are interested in getting a mask of their own with how bad the flu is this year.  It was a very pleasant surprise – I know that I work with such high-quality people and this experience confirmed it.

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I actually ended up not passing out checks, because though I had my mask, my team was still very concerned about me getting sick, and offered to do it for me.  I was also told that I could go home and work remotely for the afternoon and Friday because of how many people were sick in the office.

Overall, this was a great experience!  I pushed myself out of my comfort zone to advocate for the autoimmune community and I feel so proud.

 

**If you are interested in getting a Vogmask, “sickchicks” is a promo code for $10 off that is good through February.  I am not employed, sponsored, or affiliated with Vogmask.  This is just a tip I saw in a support group I’m in from someone else who is also not affiliated with Vogmask.  I just wanted to pass the savings along!

Theme Parks: Spoonie Style

Though it can be rough to travel and enjoy vacations with a chronic illness(es), many theme parks across North America, Europe, and Asia make an effort to help make the trip a bit easier and more enjoyable.  Many parks have accessibility programs for guests with disabilities and/or chronic conditions.  In this post, I am going to cover the policies for Disney Parks, Universal Studios, Six Flags, Cedar Fair, and Merlin Entertainment parks and some tips that could be applied at any park.  I’ve researched and learned quite a bit about the policies at all five parks because I love theme parks & roller coasters, but Disney’s policy is the only program I’ve experienced firsthand.  Because of this, I will be speaking to their policy in greater detail and sharing my personal experiences.

Disney

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Disney’s Electrical Parade float

When you arrive at a Disney park, you will first go through the security check-point where the search your bag(s).  You are allowed to bring food & drinks (non-alcoholic) in your bag, which is especially helpful if you have food allergies or need to have food on hand for medical reasons.  Disney operated restaurants have great allergy menus at each location and take great care in limiting any risk of cross-contamination, so you don’t have to worry about that here!  (Disney Springs restaurants are not owned by Disney and their allergy menus and prep areas will vary from restaurant to restaurant.)  Since you carry your bags with you through the parks and on each attraction, I typically opt for a crossbody or messenger bag with a zipper, so I can keep it secured throughout the ride.  In addition to packing water and snacks, I also brought Clorox wipes and DripDrop.  Clorox wipes were helpful to have to wipe down 3D glasses for attractions that use them or cleaning tables at quick service restaurants before eating.  DripDrop is something I love to have on hand.  It was developed by Dr. Dolhun from Mayo Clinic and is an oral rehydration solution.  Walking around in the heat, this is a very effective solution to keep yourself hydrated. (Lemon is my personal favorite!)

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Waiting for dinner at the Mexico pavilion

Disney offers a Disability Access Services program for guests who are unable to wait in a standard queue due to a disability or chronic illness.  When you get through the turnstiles, head over to Guest Relations to speak with a Cast Member regarding DAS, and explain your condition and limitations regarding a regular attraction queue.  I personally used this program due to my IBD (ulcerative colitis), as I may have to leave the line at a moment’s notice to use the restroom.  Because of this, I am still able to wait the allotted time for the attraction, but I just can’t wait in the traditional queue.  Disney policy states that they cannot ask for proof or a doctor’s note for approval.  Once approved, your picture will be taken of you and each of your party’s tickets or magic bands will need to be scanned to link them to your DAS pass.  A maximum of six guests are covered by a single DAS pass.

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Meeting Dug & Russell from Up

Once you’re set up, you can go to a ride and request a return time.  You are only able to request a single return time until you’ve ridden that ride.  During this period, you can use your FastPass for other rides, use the bathroom, relax, eat, etc.  If you are unable to return to the attraction at your return time, you are still able to use that pass any time before the parks close.  Once you return, you will use the FastPass line to enter the ride.  Depending on the time of day and what time of year you’re visiting, the length of the FastPass line may vary.  Once we were in the FastPass line, our longest wait was fifteen minutes from entering the line to boarding the ride.  This program worked very well in accommodating my needs.  At Walt Disney World, FastPass+ is included in your admission, and you can begin reserving three FastPasses per day of your visit 30 – 60 days in advance, depending if you’re staying on property.  Once you have used your three FastPasses, you are able to select additional reservations one at a time.  Between FastPass and breaks to rest, we were able to enjoy the park and the wait times for DAS flew by.  If you do find that DAS doesn’t meet your needs, Disney recommends that you speak with a Cast Member at Guest Services to discuss the accommodations you need.  There may be some situations where they can’t fully accommodate your needs, but in general, Disney really does their best to go above and beyond to give guests the most magical experience possible.

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Me & my husband in the Rock n’ Roller Coaster queue

Typically, DAS passes are not given for those with mobility disabilities.  If a guest has another disability or illness in addition to mobility, a pass may be issued for that reason.  I ended up needing a wheelchair for about half of our trip.  Around 1pm on our first day, I was in so much pain and feeling so weak that I was not able to even walk to the entrance to catch the bus back to our hotel.  A Cast Member at One Man’s Dream in Hollywood Studios lent us one of the attraction’s wheelchairs to get me up to the busses.  We went back to the hotel to nap, and by the time I woke up, my husband had ordered a wheelchair from a third-party company and it had already been delivered.  I would try to do mornings/mid-day without the chair, and then we would go back to the hotel to rest and I would use my wheelchair in the evening.  Even though we were given a wide-width wheelchair, we didn’t have much trouble making it through most of the FastPass queues.  Tower of Terror (at Hollywood Studios) and Soarin’ (at Epcot) were both tight, but the chair was able to make it through.  I really enjoyed having a chair from a third-party so we could take it outside the park.  If I was at the point of needing my chair, I would have also had a difficult time walking from the park to buses to our hotel room.  All Disney transportation is wheelchair friendly, but we mainly used the buses because of the hotel we were staying in.  If you might be using a wheelchair, I would suggest requesting a hotel room in a building close to a bus stop.  Some properties have multiple stops, while others only have bus stops at the main building.

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Wheelchair selfie!

Universal

Universal Studios also has checkpoints at their entrance.  Though Universal has special menus for allergies, the do have a disclaimer that they can’t guarantee the risk of cross contamination.  Because of this, you may want to bring in food and water, in addition to any medical supplies you may need.  Universal allows you to bring food you need for medical or special dietary needs and up to two liters of water.  Bags are subjected to x-rays and/or additional inspection.  Bags are not allowed on rides, but Universal offers lockers near rides.  If there are medical supplies you may need at a moment’s notice, you may need to use multiple lockers or plan your trip to stay close to your locker.

Universal offers an Attraction Assistance Pass which provides guests with a return time comparable to the current wait time.  You are only able to get a single return time until you’ve ridden the ride.  After that, you can receive another return time for a second attraction.  Guests in a wheelchair may not need an Attraction Assistance Pass, as Universal has built most of their queues to be accessible to those using a wheelchair, but the Guest Services Team evaluates this on a case-by-case basis.

Six Flags

At Six Flags parks, guests must first get approval to bring outside food in for special dietary or medical needs.  If approved, Guest Services will mark and date the containers to show that they have been approved to bring into the park.

They offer an Attraction Accessibility Program to guests who have a medical need and/or disability.  To obtain the pass, Six Flags requires you to show a valid doctor’s note with the guest’s name, the doctor’s name, address, phone number, signature, and a statement indicating the guest has a disability or other qualifying impairment that prevents them from waiting in a standard queue.  The note must not include the guest’s diagnosis.  The guest is also required to provide photo ID.  With the Attraction Accessibility Program, the guest and three companions are covered by the pass and can enter through the alternate entrance.  They receive a reservation time comparable to the current wait time.  You have a fifteen-minute period after your reservation time to board this attraction.  After this time, another reservation must be made.  If there are more people in the party, they must wait in the standard queue.  Once they reach the front of the line, they let the employees know that there are other member of their party joining using the Attraction Accessibility Program.

Cedar Fair

At parks owned by Cedar Fair, outside food or water is only allowed for medical conditions.  These parks offer a Boarding Pass Program which allows guests to access rides through exit ramp or an alternate access entrance at a specific time.  Guests are given a piece of paper where wait times can be written on for each ride.  Wait times are based on the current length of the line and Boarding Passes do not offer immediate boarding.  Guests are not allowed to get more than one wait time, similar to other parks.  Four guests, including the one issued the Boarding Pass Program, are allowed to ride with the pass.  Additional members of the guest’s party will need to wait in the regular line, while the other four are able to rest or wait somewhere else.

Merlin Entertainment

Merlin Entertainment has theme parks across North America, Europe, and Asia.  Their park rules (including those regarding accessibility/ride access programs) vary from country to country.  Since Legoland is the only amusement park that has multiple locations, I’m going to start there!

Both their California and Florida parks allow backpacks, which may be searched upon arrival.  Guests are allowed to bring water, snacks, and any food required for medical purposes and any special dietary needs.  Both of these parks, along with the Malaysia location, offer gluten free and other allergen free options.

Both of the US parks offer a Hero Pass which allows the guest and one companion immediate access through the ride’s exit.  Larger parties are required to get a reservation time.  The Hero Pass is valid for six total guests.  The Malaysia location has the same policies with their Assisted Access Pass.  Legoland Windsor offers a Ride Access Pass for which they require documentation.  This can a be letter from the guest’s GP, Association Membership details, Council run membership, or any other forms that states the disability.  Disability Living Allowance (DLA) and/or Blue and Orange badges are not accepted since they don’t state the nature of the disability.  Guests without documentation will not be granted a Ride Access Pass.  Guests of the Windsor park using their Ride Access Pass are required to have a smart phone or tablet, as they system is operated online.  A maximum of four people (including the disabled guest) will be allowed to use this pass.  Most of Legoland Windsor’s queues are wheelchair accessible, but those that aren’t are accessible through an alternative entrance.  The park in Japan offers an Assisted Access Pass that allows virtual queuing for a single ride at a time.  They also offer the disabled guest’s companion free access if they have an ID Booklet for Disabled People issued by the Japanese authorities.  I could not find any documentation on an accessibility program at the park in Germany, but they offer a 4 EUR discount on standard entrance price for “severely disabled” guests.  A companion can enter for free if the disabled guest has an ID card with the letter “B” on it.

Though there are some differences between the accommodations at Merlin Entertainment’s three amusement parks in the UK, once you’re registered for a Ride Access Pass at one, it can be claimed at the other two parks with your confirmation number and a photo ID.  To register, these Merlin Entertainment parks require you provide proof of eligibility.  This proof can come in the form of a certified letter from your doctor or consultant, a letter from another medical professional such as nurse, a Disability Living Allowance (DLA) letter stating you’re entitled to higher rate mobility allowance dated within the last twelve months, or a valid Blue Badge along with an additional photo ID.  All three parks allow the guest up to three companions join them when using the pass.  Alton Towers requires the disabled guest to have at least one companion with them on each ride to assist in case the ride needs to be evacuated.  Both Thorpe Park & Alton Towers provide wristbands to those using the Ride Access Pass.  Chessington World of Adventures instead offers ten tokens that the guest can then use on the rides of their choosing.  At each park, the Ride Access Pass acts like a virtual queue.  Similar to other parks, you can only have one queue reservation at a time, and when your time has arrived, you can board the ride through the exit or a designated entrance.  Chessington World of Adventures website lists that forty-five minutes is the maximum wait time for guests using the Ride Access Pass.  I couldn’t find anything regarding allergy menus or offerings at any of these parks.

Gardaland Resort does provide special meals prepared and stored to protect against contamination for those with celiac disease.  This park also offers two types of access cards:  Easy Access Card and Priority Card.  The Easy Access Card is typically used by pregnant women or people with lower limb casts and one additional companion.  Though this card provides easier access, it is not priority access.  The Priority Card gives access to the disabled guest, one adult companion, and/or three children.  It was not mentioned that a medical certificate is required for this pass, but since they require it for the Easy Access Card, it may be good to have one on-hand, just in case.

I really hope this insight on accessibility policy helps you venture out and enjoy different theme parks.  As you can see, many parks make an effort to help allow everyone access to their attractions and adapt to assist those with disabilities.  Hopefully these programs can help make the most of your vacation!