Week one of my medical leave has been going well. Though I still feel weak, fatigued, and pained, I can feel myself and my body moving in the right direction. I tried not to put too much on my plate, focusing mostly on self-care, getting my FMLA and Short-Term Disability paperwork filed, and making appointments.
I had an appointment with my rheumatologist – that Alex came with me to – where we went over my current symptoms and pain levels/locations. My doctor increased my Cymbalta dose by 20mgs and agreed to fill out my paperwork, and I agreed to go on a walk every day – which I’ve done each day except for today. The end of last week was filled with calls with my gastroenterologist’s office. He had just come back from vacation, and the completion of the paperwork was taking longer than I was originally told to anticipate. The calls back and forth were definitely causing me some stress, which lead to some retail therapy at Target where I added to my personal library collection, picked up a pair of comfortable shoes for the aforementioned walks, and strawberry blonde hair dye because I needed a change.
On Friday, I made two appointments with specialists at Cleveland Clinic – an IBD specialist and one of the rheumatologists who run the clinic’s Fibromyalgia Management program. The appointments are both later in the summer, but I am excited to meet with both of these doctors and see what other treatment options or plans are available to increase my quality of life. I had a few extra spoons that day, so I decided it would be a good chance to dye my hair. Though I love the color, I unfortunately misjudged my spoon count, and I was down for the rest of the night and into Saturday.
Throughout the weekend, Alex and I watched both Grey’s Anatomy and Stranger Things while playing Stranger Things Monopoly (another item from my Target shopping spree). I’ve also started reading Big Little Lies by Liane Moriarty and continued working on the jigsaw puzzle I was doing, in between naps with my pups.
Come Monday, my paperwork from my GI was finally ready to be picked up, so I ran that over to work and faxed the Short-Term Disability paperwork over to the carrier. Between being the benefits admin at the company I work for and being the first to go through the process from the employee side, I want to write a piece on FMLA and Short-Term Disability once I have completed the approval process with the insurance company. (For now, they have all of the information they need from me. They will review it and reach out to notify me that I’ve been approved, denied, or that they need additional information.)
Other than the things mentioned above, I’ve been just trying to get as much rest as possible. In “week two”, I want to start helping out around the house more or generally trying to be more active. Not more active than when I was working, because that would not do me any good, but more active than I have been this week. I do think it was important to take this first week to get a lot of rest, but I want to try and find the balance in this.
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!
I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it. Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link).
I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day. Once I began biologics, starting with Humira, I only needed prednisone during a flare. I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me. I was no longer seeing any benefits or improvement from it – only the negative side effects. Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.
My moon face while on prednisone was one of my biggest insecurities. Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough. A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time. I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare. Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened. Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital. When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!” This is my clearest roid rage memory. In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid! It’s because I’m on fucking prednisone!” Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines. Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.
My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face. I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate. Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving. It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned. My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it. They were attempting to give 3 100mg doses throughout the day. They insisted on giving me the 2nd dose as I was beginning to fight back. I got my family involved. I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended. They called my GI back and he was outraged. I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving. Needless to say, I blew up like a balloon. Think Violet Beauregard. My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced. Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.
A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis. That obviously wasn’t just from this event, but also from the years during which I was steroid dependent. Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well. Though prednisone once provided me relief, I am personally glad that I no longer tolerate them. Each patient needs to weigh the pros and cons in their specific case and make their own decision from there. Moon faces, unite!
February is my Portiversary month! I have a single lumen power port that was placed two years ago.
Once upon a time, I had good veins that nurses were able to access. After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick. The journey to getting my port began during my final loading dose of Entyvio. On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times. They brought out all of the tools in their arsenal and were still unable to get one started. The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion. Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week. Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room. This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.
After my loading doses had finished, my infusions were moved to a center closer to my home. During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two. Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began. My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail. With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.
I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working. We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis. During this scope, my colon looked the best it ever had since diagnosis! Because of this, my GI’s office set up an appointment for me with their recommended surgeon. The consolation went great and he made me very comfortable with the procedure. He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha). He was able to get me on the schedule before my next infusion – which was great!
The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened. While in pre-op, I debated with my husband whether or not I wanted to do this surgery. (Spoiler alert: I am extremely glad he encouraged me to follow through.) When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein. They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me. After speaking with him, I agreed to move forward with the surgery. He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me. They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia. And then I woke up with a port! It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.
During recovery, the site was painful for a bit, but that didn’t last long. Most of the discomfort was due to the skin being stretched out over the port. I wore loose tops for the first week or so as that helped lessen the discomfort. I did ice the site many times throughout the day. While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.
My first infusion with the port – and every infusion after – went splendidly. I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started. For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since. It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it. One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side. Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.
Caring for the port is pretty simple. Thankfully, since the port is under the skin, there is not much risk except when accessed. I am able to shower, take baths, or swim without having to take special precautions. Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month. When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.
Whether you have a port, picc, or get regular IVs, you know your veins best. Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed. I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access. I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins. Thankfully, many nurses I have encountered have the mentality that I know my body best. I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations. I really stand my ground because that’s what’s best for me and my body.
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.
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!)
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.
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.
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.
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.
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.
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 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!