Healthcare Bluebook

In the United States, health care and cost of services can vary between both doctors and facilities.  The most extreme example of this that I have personally witnessed is the cost for both Entyvio and the nurse to infuse it.  I have received Entyvio infusions from four different locations – two hospital outpatient infusion clinics, a doctor’s office, and at home.  The total costs have ranged from $2,500.00, on the low end, to $22,000.00 – for the same drug, with the same premeds, being infused over the same period of time.  The price difference between the two hospitals was even shocking – a delta of $18,500.00.  Thankfully, many biologics and other drugs offer co-pay assistance plans, which have helped a great deal.

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The good news is that you can compare prices for procedures or medications at different facilities to keep from being surprised.  In my role as the benefit administrator for the company I work for, I learned of Healthcare Bluebook during this year’s open enrollment period.  A rep from one of the carriers I work with brought it to my attention.  It allows you to search in your area by either typing in a specific service or by selecting a category such as hospital, physician, imaging, labs, medications, etc.

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Once you search or select a service, the site will give you the low, fair, and high price for the area – 90210, in my example.  Depending on what your searching for, Healthcare Bluebook also offers prices for facilities in the area.

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This post is not endorsed by Healthcare Bluebook in any way, I just wanted to share this helpful resource with my fellow spoonies and warriors!  I hope this helps you navigate the health care system while saving some money in the process! 😊

A Big Announcement

I realized today is exactly one month since the last blog post that I’ve written.  Everything since has been written by my wonderful, caring husband (for Alex’s Caregiver Corner) who has been helping not only with covering blog posts, but also by being my rock during this hard time.  My health has continued to worsen since I was in the hospital, and I’ve been trying to balance work, family, friends, health, self-care, and The Misadventures of a Spoonie without much success.  This past month has been mostly filled with work, some family time, and interrupted sleep/painsomnia with some eating sprinkled in when food actually sounds good.  (Typically, banana bread with chocolate chips, in case you were wondering! 😉)  Thankfully, I love what I do and the people that I work with, which made the past month much more enjoyable, even though my health wasn’t great.

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Since before I went into the hospital, my husband and I have been discussing the possibility of me using FMLA and Short-Term Disability.  Because I enjoy my job and have workaholic tendencies, I have been putting off this decision, but have reached a point where I know my health will continue to decline if I don’t take this time to heal.  I feel really lucky to have the support system I do in making this decision.  Though it’s been difficult, having the support of Alex, other family members, close friends, my incredible supervisor/mentor, and the C-level team of the company I work for has made the decision easier.  With each person I spoke to and felt supported by, a weight was lifted from my shoulders.

This will be a big shift for me, but I am looking forward to having this leave – which begins next week.  My main focus during this time will be getting second opinions, trying to find additional answers, working with doctors to create a treatment plan that works better than my current one, and all the trial-and-error that comes along with it.  As many of you know how exhausting “doctor shopping” can be—and any travel that comes along with it—I will also be trying to be better at practicing better self-care and listening to my body.  Personally, writing content for The Misadventures of a Spoonie and The Great Bowel Movement is quite cathartic for me.  Being able to express my thoughts, feelings, pain, and experiences through writing helps to keep stress levels down, and I love being able to help others in the process.  Through this blog, I plan to document my experiences of being on FMLA, applying for (and hopefully getting) Short-Term Disability, doctor’s appointments, and any major changes in my diagnosis or care.  Plus, I have a stack of mystery novels to read while resting with my pups.

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Here’s to the next three months!  I’ll be posting again soon. 😊

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!

Hospital Essentials

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?

Keeping Cozy

Today’s post is a bit shorter than most, as I haven’t been feeling well.  With pain top of mind today, I wanted to touch on what clothes I find the most comfortable on bad pain days.

When I’m in a lot of pain, the texture of clothing is a big thing that helps me.  Though it doesn’t reduce my pain, soft, smooth, flowing fabrics help reduce any additional pain.  Two of my favorite shirts are cotton/polyester blends that have been worn and softened through washes for years.   When it’s colder, flannel button-up shirts are another go-to of mine.  Especially with my powerport, button-up shirts are one of my go-tos for infusions and long hospital stays – definitely more comfortable than a hospital gown and it still allows people to my port site.  I also wear a Christmas sweater (around the house) all year round because it’s so comfortable!

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Though not flowing, I have also found a pair of soft leggings that have good coverage that I love.  When I moved to my current company a few years ago, I took advantage of their casual dress-code and bought 6 additional pairs – so I could wear them all week.  If I’m not at home in my sweatpants, I am wearing leggings with a soft shirt and a sweater.  Though I still have a few pairs of jeans, I prefer not to wear them because my skin has been much more sensitive to rough fabrics.  Ever since I began showing fibromyalgia symptoms, my skin hurts when wearing rough fabrics – even with my sweatpants when it gets really bad.  The stretch of leggings is also more forgiving and as comfortable as possible when I’m distended.

What is your favorite thing to wear on bad pain days?  Why does it help you?

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!

A little bit about me

Hello! My name is Lauren, and I want to welcome to The Misadventures of a Spoonie!

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My rheumatologist always says that my body didn’t read the handbook and doesn’t follow any rules.  With many of my conditions not presenting themselves as “textbook”, I have encountered many hiccups in the healthcare system along the way.  Between these tales and my experience as a benefits administrator, I hope I can help others navigate their way through health care and life with chronic illness.

Personally, I have ulcerative colitis, endometriosis, ovarian cyst (removed), thyroid cysts, arthritis, and additional undiagnosed issues.  While on Remicade, I also began having drug-induced lupus symptoms, which have since stopped.

I am so thankful for my wonderful support system of my husband and our two cuddle-bug puppies.  There are two reasons The Spoon Theory means so much to me: 1) It helped me realize that it’s okay to ask for help instead of borrowing spoons, and 2) it helped my husband further understand what I’m going through.  He is a very logical person and the quantitative approach helped him comprehend my energy levels and symptoms beyond his initial understanding.  He always checks-in on my spoons and helps support on tasks that really wear me out.  When tasks do wear me down, I can always count on our pups to stay by my side when I’m stuck in bed.

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Thank you for checking out my blog!  I look forward to sharing my experiences with you!