My other job: Professional Patient

Being a patient can often feel like a second job because it pretty much is one. Between going to doctor appointments, scheduling said appointments, talking on the phone with nurses, doctors, insurance people, and doing my own independent research to stay on top of the most current news and treatment options for IBD, I often feel like I am juggling another job. Take today for example: I had a morning annual exam with my primary care physician, followed by going to the lab to hand in a stool sample. Then it was off to go get my first mammogram before lunch. I grabbed a quick bite after getting my boobs compressed multiple times in a machine, and capped the day off with getting seven viles of blood drawn and a three-hour infusion of Remicaid. I started my day in the hospital at 10am and left at 4pm. On my way home, I got a call from Dana-Farber in Boston to schedule genetic testing with them as per my primary care doc’s recommendation. Good times.

Honestly, it wasn’t too bad. I brought a book and downloaded some podcasts to pass the time. And as the mother to a six year-old, I don’t often get six hours of quiet all to myself. Would I rather not be spending those hours in a hospital. For sure. But I try to look at the glass half full as much as possible. It could always be worse.

What is challenging is making the time for all of this. I work full-time as a teacher. I also work as an independent travel consultant on the side. The latter is more of a hobby but it still requires time. And it is something that I enjoy and that helps keep my stress levels in check, so it’s worth it. Most importantly, I’m a mom and a wife. But I know I can’t do any of this successfully or with joy if I’m sick. So I make the time to also work as a professional patient. It’s annoying that I just spent my second day of three day break all day with doctors. But in the end, it’s worth it. Maintaining my health and my current quality of life is of the utmost importance to me and my family. I’m learning to not feel guilty when I need to opt out of certain things in order to take care of myself. It’s sometimes hard to say, “Sorry, I can’t.” Sometimes I explain its for health reasons/appointment obligations, and sometimes I just kindly decline or explain I have a conflict. I’m learning. I’m getting better at advocating for myself. I should give myself a raise, huh?


The Lonely Factor

restroom2Having an incurable disease can often make you feel very alone. When you first get sick it’s easier for people to be empathetic and reach out to make sure you are doing okay. After the first year rolls around, people aren’t as interested in hearing about the issues surrounding your disease(s). And you might not be as apt to want to discuss them with friends or family for fear of seeming needy and not wanting to be labeled “the sick person”. Hell, I’m sick of my own issues. But it doesn’t change the fact that sometimes you need to be able to talk about your health journey. Who do you talk to when you are worried no one wants to hear it anymore? My disease isn’t going away.

Yesterday I had my Remicade infusion and when I walked in for my appointment I was feeling pretty lousy. I was being treated for pneumonia because I have been struggling with a respiratory infection for awhile and my doctor was concerned about the fact that I was due for my Remicade. It’s a very busy time of year for me at my workplace, and taking a week off work was not an option. So I coughed through my last week of work, feeling like an elephant was sitting on my chest, and having no energy whatsoever, but managed to somehow get through it. A round of antibiotics, two inhalers and various cough suppressants later and I’m doing better. Still not awesome but better. When I get sick it takes my body twice as long to fight it as the average person. When you are taking immunosuppressants that is pretty common. Add the fact my stomach was off (whether due to the fact I was stressed at work, on antibiotics, about to start my period, or due for my Remicaid….take your pick) but I wasn’t going to complain about that, too. I’ve also been having some new issues with my eyes (thanks IBD!) so I was definitely fragile. My infusion nurse could tell I was off. “What’s wrong? Are you okay?” Struggling to hold back tears, I said I was just not feeling great lately. The truth is that my infusion nurse knows me pretty well at this point. I’m in there every six weeks for a three hour time span. We’ve talked at length about my disease, my workplace and my family life. She shows me pictures of her grandkids and tells me about her travels. It’s a special type of relationship. There is a certain bond that I think develops between a nurse and their patient when they’ve been seeing you so frequently for years. Frankly, I feel like my infusion nurse knows more about what’s really going on in my life than some people I see everyday.

We chatted, along with another patient getting infused beside me. Sometimes that’s tricky because I’m not always wanting to talk that much around other patients. But occasionally  it’s the most liberating thing ever. Every once in awhile you end up meeting another person that has been dealing with your same issues. Sometimes they are much older or younger, but we share so many common issues, that we are relieved to talk openly with some one else who just plain gets it. The three of us chatted about everything from which meds we were all on now, my eye issues, holiday plans, believing in Santa Claus, to what we wanted for lunch. I walked out with a bandage on my arm and a small Remicade hangover, as well as needing to find an ophthalmologist, but I felt so much better because I felt understood. I felt like I didn’t have to hold back and I could just be free to talk about my life, the good and the bad. Honestly, that three hour infusion was the best therapy I could have had.

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I had an appointment with my GI’s PA yesterday to just catch up and let the team know how I’m doing.  I’m doing well by the way.  Besides a bizarre post infusion symptom development seven weeks ago, everything has been smooth sailing.  It looks like it was just a random occurance (we hope), as I had my Remicaid infusion yesterday and all went smoothly.  Whew!

While we were chatting I wanted to get his take on the talk surrounding biosimilars and how they are going to change the landscape of IBD treatment.  If you are unfamiliar with the term biosimilar, it basically means the generic version of biologic drugs.  Here’s an article via Medscape on biosimlars in IBD that is worth checking out…click here.

Basically, it’s totally unknown what this is going to look like for us.  He said the good news is that many of these biosimilars appear to have been able to better target what they are trying to do, meaning this could mean less side effects for patients.  It also means there are more options.  Additionally, they are going to be cheaper, so that means the ability to have more patients treated.  The negative could mean that insurance companies will now force patients onto the biosimilar version of a drug like infliximab (aka Remicaid) and since we don’t know how effective this biosimilar really is going to be, that just adds to the major troubleshooting doctors and patients already have in trying to figure out treatment plans for patients.  My thought is that insurance companies will probably try and force patients onto the biosimilars but hopefully if you are already on a drug like Remicaid and it’s working, the doctors will be able to fight to keep patients on their existing drugs, as they would be “grandfathered” in.

My big question for him was if a patient had developed antibodies to Remicaid and could no longer take that drug, would it’s biosimilar be a viable option?  Or would the biosimilar be too dangerous to try?  He answered very honestly that he had no idea.  That no one did yet.  He  currently believes that if the patient had high antibody levels and had a severe allergic reaction to Remicaid,  they would not want to try the biosimilar but would move to a different drug.  Maybe if it was a last resort type of situation and the patient had failed all of the other drug options  I appreciate his candid and honest answer.  The truth is, we just don’t know what the biosimilars are going to do.

It’s new and uncharted territory, for sure.

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Infusion Time: 10 Tips for Patients

restroom2Just got back from my Remicaid infusion and all is well.  I remember how nervous I was my first couple of treatments.  I still get a little nervous each appointment.  I just want everything to go smoothly and for this medication to continue working well.  It’s been about 17 months of infusions and, minus a few bumps in the road, a pretty quiet ride.

I thought it might be nice to compile a list of infusion related tips/advice at this stage in the game.  I’m by no means an expert but I know quite a bit about being a patient that regularly needs to receive intravenous treatment.  Here goes:

1.) Hydrate well before each treatment.  Being sufficiently hydrated will help your nurse when he/she is trying to find a “good” vein.  And it makes it a less painful process for you.  Nothing worse than having people poke and prod.  That said, nurses in charge of infusions are pros.  They do this all day every day and are very skilled.

2.)  If you have a place where you prefer getting an IV, don’t be afraid to let them know.  Conversely, if you have a spot you hate getting IVs, don’t be afraid to voice that to the nurse.  Sometimes you won’t have a choice because they need to go for the vein that looks the best.  But often times they can shoot for your preference.  Example: I hate getting IVs in my hand.  It always seems to hurt, causes me anxiety, and blood flow isn’t great from my hand.  So if they need to take blood (which they always do for testing) it can be a not very fun experience.  I remind my nurse at each infusion to avoid my hands if they can.

3.) Bring/wear warm comfty clothing.  I often get cold during treatment.  It’s a fairly common response.  I make sure to wear something that makes it easy for the nurse to set up for the IV in my arm.  I also always bring warm, fuzzy slipper socks.  You might find this unnecessary if your infusions can be done in an hour or less.  My infusions tend to take about three hours.  It’s an hour of prep (blood draws, steroid injection, take my premeds and go through the whole question/answer updates via computer system.  Then it’s another two hours once they get the Remicaid going.  I also ask for a warm blanket from my nurse.

4.)  Bring something relaxing to do.  I always have a book on hand and bring along my ipad and phone.  That way I can listen to music, watch some Netflix, etc… To be honest, sometimes it’s nice to have two hours to completely zone out.  I try and think of it as a spa treatment. 🙂

5.) That leads me nicely into my next piece of advice….stay calm.  Try not to work yourself into a frenzy.  Maybe you have an aversion to IVs.  Maybe you are scared shitless of these drugs.  If you can stay calm and relaxed, it makes the whole process much easier.  Our minds and bodies are connected.  Meditation can be very helpful if you have a lot of anxiety around medical issues.  But I find keeping my mind focused on other things, through reading/listening to music, is perfect.

6.) Try and get to know your IV nurse(s).  The better relationship you have with them, the safer and more comfortable you will feel.  They really do want you to feel better.  I very much look forward to catching up with my infusion nurse every 6-7 weeks.  She is a total sweetheart and clearly cares so much for her patients.  It’s nice when you feel your medical team cares and knows you.  It helps.

7.) Be communicative with your infusion nurse.  Don’t be shy about giving them updates on your health, if you’ve noticed any new symptoms, or if you have questions.  And definitely let them know if you begin to experience any signs of an allergic reaction during your infusion.  They will be monitoring you very closely throughout, checking your vitals regularly and looking to see if you develop a rash.  But if you notice something before they do (rash, trouble breathing, etc..) let them know immediately.

8.) Try and always show up to your appointment on time.  It depends on your infusion center but my center has very limited chairs.  They book things on a tight schedule and if someone is late, it can throw the whole day off.  Also, cancel and re-book if you know you won’t be able to make it. Chances are there is a patient out there that could use a free chair and maybe had to push their appointment back.  It’s the considerate thing to do.  Everyone runs behind at some point but it’s important to try and be timely to these appointments.  You’ll be doing yourself, the nurses and other patients that day good.

9.) Don’t skip your appointments if you can help it.  You might be forced to cancel should you develop a fever or other signs that you are coming down with a virus or infection.  Remember, these drugs are suppressing your immune system intentionally.  It’s dangerous to have an infusion of Remicaid if you might possibly be battling another health issue.  But if you are otherwise healthy, outside of your IBD issues, get thee to your infusion appointments.  This will ensure you are maintaining the correct amount of the drug in your system so that you can feel good.  Additionally, it helps your system from possibly developing antibodies to the drug.  You don’t want to go an extended period of time without, as that increases your risk of an allergic reaction to the drug.

10.) Treat yourself on infusion day.  Let’s be honest…no one wants to go the hospital, sit an a chair for three hours hooked up to an IV.  It’s not exactly a fun time.  It’s not the worst but it’s no party.  You have a serious disease and this is what it takes to help you maintain a high quality of life.  But doing something nice for yourself on the day of your infusions is patting yourself on the back and giving yourself a hug for a job well done.  I take myself out for a shake at my local “Shake Shack” post infusion.  It’s something I have begun to look forward to and it’s now just a part of my routine.  It helps me end my day on a positive note.  Sounds trivial but I swear it helps!

There’s my list!  Ten tips when getting infusions.  Fun fact:  I was IV phobic prior to getting diagnosed with this damn disease.  I wouldn’t go as far to say that I’m totally okay getting stuck every six weeks but I get a whole lot less anxious about it now. It gets easier.  Especially if the drugs work for you!

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Thanks for your concern but….

imageI haven’t written a post in quite some time. In general, life has been pretty good. Besides dealing with some chronic asthma issues since the summer and trying to get that under control, I’ve been feeling fine. Treatment plan is still working effectively and my UC has been managed well. I still deal with fatigue issues more frequently than before but I’m eating a more balanced diet than in a long time.  I’ve even been able to tolerate small servings of certain raw veggies occasionally.  We are talking minimal portions; I’m still not ordering any salads in the near future. But being able to add a raw pepper or two and a cucumber slice to my sandwiches makes lunch time more fun. It’s the simple pleasures in life, isn’t it?

Today I wanted to share a recent experience I had in my workplace. It’s been on my mind.  I think it’s something many IBDers will relate to and sometimes we just need to know we aren’t alone.  I keep this blog for that reason.

I was walking down the hallway and had a short coughing fit. This has been happening more frequently, as I am suffering from some pretty bad asthma attacks which my doctor thinks are being exacerbated by seasonal allergies. A colleague stopped me in the hall to ask if I was alright. They were clearly concerned but then followed their concern with this statement: “Are you sure you are okay?  I mean, you seem to get colds so often. We need to get you a flu shot right away! Don’t you think you are sick too often?  You seem to always be sick.” That’s a direct quote. It took everything in me not to blurt out, “Why yes, I am sick a lot. I have an autoimmune disease and I take a lot of drugs that suppress my immune system. I completely agree that I’m sick too often but the truth is if I stayed home every time I had a cold or some stomach pain, I wouldn’t be able to leave my house very often. And yes, I get a flu shot every year.” Instead, I just told them I had some allergy issues and quickly excused myself.  I’ll add that this particular person has commented on my health on numerous occasions.  I swear to you that every time I sneeze they seem to be two steps behind me. “You are sick again?  Oh no! We need to keep you healthy!” Totally well-meaning but also completely infuriating.

This person honestly thought they were being kind and believed they were just expressing their concern.  Deep down, I know that. They are not someone I have ever spoken with about my IBD. I don’t tend to talk too much about my IBD at work because when I’m at work, I’m at work. Working. I don’t usually get “into it” because it’s a complicated and emotional subject matter. There are a trusted few that know how much life has changed for me and I occasionally fill them in on how treatment is going.  I take my job very seriously and I give 100% of myself every single work day. Whether or not I’m feeling in tip-top shape does not play into my work performance. I’m a trained professional dancer and let me tell you, dancers just make it happen regardless of how their body is feeling. I’m not advocating that you work when you are unwell and need medical attention but just making the point that I am a professional and know when I’m not well enough to work. This is life. Most people don’t feel awesome every single day. It’s a sad fact but it’s true.

I do get colds more often than your average person and it takes my body longer to recuperate after a virus.  I go to the doctors a lot.  Routine appointments, lab work ups, treatments, and then even more often if I’m dealing with an out of the norm symptom. I have a shit immune system that I now suppress intentionally. What I don’t need is anyone pointing out to me that my immune system sucks or that I seem to have to go to the doctors often.  I’m well aware. Thanks for your observation but I would like to kindly ask that you keep your observation and advice on the matter to yourself. We never know what another person is going through on a day-to-day basis.  I’ve got a lot of people who give me medical advice. I’ve got a whole team of dedicated professionals that I meet with on a very regular basis, so I’m all set with advice. For the record, I did get my flu shot, just as I do every single year.

The gist of it is, it can be very frustrating for a person with chronic health issues to be told they have chronic health issues.  We work very hard many days of the year to put those issues in the back of our minds so that we can go about our day and enjoy life.  I hate being told I look tired.  That’s because I’m probably tired.  Or that I’m looking too thin. I’m even sensitive to being told I look great because sometimes I look great when I feel awful.  It sounds silly but it’s true.  I think when you are fighting invisible diseases it just changes your perspective on comments surrounding appearance.  It’s not that I don’t appreciate the compliment; it’s just when you are feeling really crappy it’s hard to be told you look fantastic.  Even though you probably spent time trying to make yourself look fantastic and not sick.  I know, I know!  Confusing, eh?  There are many of us battling various diseases every day of our lives.  We have good days and bad days.  Good weeks and bad weeks.  We are normal human beings and mostly we are just seeking support during those good and bad times.  But if we stop to think about it, isn’t that what everyone needs?  Whether battling a disease or not?  We all just want support and love without judgement.  And put a hold on the advice. If I need it, I’ll ask for it.

“Things are not always what they seem; the first appearance deceives many; the intelligence of a few perceives what has been carefully hidden.” – Phaedrus

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Happy Anniversary

restroom2 Yesterday I had my Remicaid treatment.  It fell on my one year Remiciad anniversary.  It didn’t dawn on me until yesterday as I was scrolling through my calendar to check my doctor appointment notes from this past year.  It feels like yesterday, yet also feels like a different lifetime ago.

One year ago I was still struggling to hold food in me, I was praising prednisone because it was the only thing keeping me going, and I was pretty freaked to be starting infusion therapy. The biologic drugs scared me big time.  Let’s be real….they still do.  I still have anxiety in regards to their possible long term health consequences, namely the lymphoma and neurological issues.  And no matter how many times my doctors refer back to the statistics, I still am frightened that these are possibilities for me.  But overall, I am so thankful that the Remicaid has been working for me so well.  I am not in total remission, as I still show some mild disease in my colon, but it was severe a year ago and my quality of life is so much better.  Life isn’t the same.  It is different.  But how could it be the same?  I am now living with a chronic disease.  There are many days where it is just something in the background of my mind.  I am not displaying any symptoms, feeling good, feeling “normal” and just doing my thing.  But there are days where I get sad knowing the battle isn’t over even though I am feeling well.  There are days I still need to race to a bathroom and I sit there in pain, quickly reminded how it could all come back at any moment.  There are days where I question what the future holds for me and this disease.

I am proud to have come this far.  I am more informed, I am battling this disease head on, and I feel hopeful about what the future holds.  There is a lot of great research going on right now and new treatments have already come onto the market since I was diagnosed.  I think Crohn’s and ulcerative colitis are getting more press and hopefully the public is becoming more aware of these painful diseases.

So on this one year anniversary, I am choosing to celebrate.  To celebrate that I am living well, to celebrate that I am one of the lucky people that this drug has given me a good quality of life at this time, to celebrate that I have dealt with the pain and the fears this disease has dealt me and gained a lot of strength and courage through it all.  It’s a battle and I know it’s not over.  But right now, I’m going to celebrate to everything I have.

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It Takes A Team

I have said in previous posts that I am very aware of how lucky I am to live just a few miles outside of Boston.  I’ve called the Boston area my home for over twenty years now and lived here longer than any other place.  I love Boston for many reasons but now having access to great medical care is up at the top of my list.  In fact, my husband and I sometimes talk about relocating but we are wary of moving away from here for just that reason.  I know there are great doctors and hospitals in many places across the U.S. but people travel from all over to come to here and seek medical care.

I learned within weeks of being diagnosed that I would now have a team of doctors caring for me consistently from now on.  I would be meeting with either my GI or the PA every few weeks or months, seeing the same nurse for my infusion treatments, talking with my primary care doctor much more frequently and more recently, I now meet with a dermatologist regularly that is knowledgable in Crohn’s and Ulcerative Colitis related issues.  Finding the right team to care for you and work with you is key in the treatment of these diseases.  All too often I hear about IBD patients that are having problems that appear to be clueless about their disease, their treatment options and seem to rarely see their specialist.  Now, I know I’m not the norm.  I want to know everything I can about my disease.  This doesn’t work for everyone.  But I think if you are not getting answers from your doctors, or they seem indifferent to your symptoms, it’s time for a change.

Most important, ultimately you are in charge of your care.  Meaning, you have choices and sometimes they are very difficult ones.  You should be surrounded by a group of doctors that you feel confident in and are not afraid to talk to.  Doctors that will answers your questions and work dilligently to try and give you the best quality of life they possibly can.  You need to advocate for yourself out there.  Sometimes that means having difficult conversations with your doctors.  Sometimes that means telling them you are confused or unsure or feel you need time to discuss things with your family.  Sometimes that means having a doctor that is okay with you sobbing and going through a box of tissues in his/ her office.  But it always means working with a team that you trust.  You are part of that team.  The most important part, actually.


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A Moment to Vent

Grrrr…You know what really gets me all worked up?  When I see ads/posts/articles claiming they know what diet Crohn’s and Colitis patients should be on?  Or better yet…..they have a cure!  You do!  Amazing!  I guess all those researchers and my GI team are wrong.  I mean, it’s only science.

Let me put this out there in case you are a newly diagnosed IBD patient.  That is a load of crap.  Pun intended.  There is no cure for these diseases….yet.  There are ways to help control your symptoms and give you better quality of life which include various drug therapies as well as dietary changes.  But the drugs and dietary changes have different effects on everyone.  No two people with IBD are the same.  No two people respond exactly the same to these treatment and lifestyle changes.

Can changing what you eat help alleviate symptoms of IBD?  In many cases, the answer is yes.  But in many cases, the answer is no.  When your body is literally attacking itself and you feel like you might be dying you are willing to try anything in most cases.  I get really angry when I see these articles or hear people claiming they know how to “cure” IBD patients.  It does such a disservice to the IBD community.  Contrary to popular belief, just because I stopped eating salad doesn’t mean I’m cured of ulcerative colitis.  It means that I hopefully won’t be sitting on my tiolet in extreme pain for two hours, but honestly, sometimes that happens anyway.  And it has absolutely nothing to do with what I ate that day.

I see a nutritionist, I kept a very detailed food log for many months, I read books on the SCD diet, cut out gluten, went on an elimination diet, the whole bit people.  You know when I finally began healing?  When I started my Remicaid treatments.  Because I was lucky.  Because that drug is helping to heal my colon which enables me to eat and live like a normal person.  A week from now, that may change.  The drug may stop working.  My body may reject it entirely and I’ll be back to square one.  But without drug therapy, I most definitely wouldn’t have a colon right now.

Changing your diet can help alleviate symptoms.  I’m not saying you shouldn’t try it.  Maybe you have a mild case and that will be enough to help you.  But please STOP SAYING YOU HAVE A CURE for these diseases.  And by the way…’s Crohn’s and ulcerative colitis.  Not just colitis.  That’s a different diagnosis.  But I’ll save that for another PottyMouth rant. Thanks for listening. 🙂

Infusion Week

restroom2I just got back from an awesome vacation to Walt Disney World. It was a really fantastic time and today I’m having some post-vacation blues. I enjoy the planning process quite a bit and it’s a therapeutic hobby for me, so not having a vacation to plan is a bit of a let down. It was quite a magical trip for my family and I am happy to report that my UC symptoms were mostly non-existent. I did have a few episodes dealing with some cramping, urgency and loose stools the last two days, but overall, it was a pretty smooth trip.

I had my Remicaid treatment just a few days ago and I am so relieved.  It went very well and I didn’t experience any of the bizarro stuff that I did last time. I did get very tired and a little woozy but all was back to normal by the next day.  But I didn’t have blurry vision, brain fuzz and all while treating daily migraines.  We think that was all caused by the 6mp.  It wasn’t until I was off of the 6mp for a significant amount of the time, did I realize how awful that drug was making me feel.  I was sucking it up because I thought I had to and didn’t really have a choice.  Originally I was put on the 6mp because the docs were afraid I was building antibodies to the Remicaid and 6mp is often prescribed with Remicaid specifically for that reason.  After I began to experience worsening side effects my doctor looked at my Remicaid levels again and came to the conclusion they were inconclusive.  Go figure.  Apparently they were using a new lab for this test and he said there is a fairly large margin of error.  While the tests were reading that I was apparently building antibodies the results were still very low and he felt it was not worth keeping me on the 6mp at this time.

I know 6mp works really well for many people but clearly I am not one of them.  It is so nice to not have headaches all of the time.  I was also beginning to have TMJ symptoms because I was clenching my teeth/jaw so often due to the headache pain.  Those symptoms have lessened up as well but my dentist thinks getting a night guard made is for the best.

In addition to the infusion, I met up with the nurse at The Crohn’s and Colitis Center for a lesson in new IBD therapies being developed.  I learned a ton and I’ll be writing up another blog post focusing on some of the info she shared with me.  It was mostly very uplifting because it makes me happy to know that there are new drugs coming out on the market for these diseases and hopefully we are one step closer to finding a cure for both Crohn’s and ulcerative colitis.

IBD and Travel

imageIn just three weeks I will be headed to one of my most favorite places….Disney World.  I’ve always had a soft spot for Disney but since taking my daughter on her first trip last March, I’ve become a full-blown fan.  And planning Disney vacations has become quite a hobby of mine.  I love the detail oriented nature of a Disney vacation.  But as we began to get closer to this vacation some fears started to creep up.  Lately, my symptoms seem to come and go quite dramatically more frequently.  I’m also amidst evaluating my treatment plan.  In fact, I have a sigmoidoscopy tomorrow to see just how well the Remicaid is working.  This lead me to worrying about whether I was going to be able to have enough energy at the parks and fears of waiting in a line for 30 minutes to get on Splash Mountain only to have to run away to use the restroom right before getting on.

I decided I should investigate Disney’s new Disability Access Card Service and find out if this card could/should apply to my situation.  I know there are people out there that try to “beat the system” and abuse things like disability passes.  In fact, I believe Disney had to change their old program to this new program because there were so many people abusing the system to try to get out of ever waiting in a line.  For me, it was hard to admit that I might actually need to use this program.  I really felt funny inquiring about the DAC because I know there are so many people out there with issues that are bigger than my disease.  I don’t want anyone to think I am one of those people looking to get out of a line.  But thinking about not getting to experience certain things with my daughter all because I might be afraid to enter a line and need to exit quickly, causing disruptions, was giving me anxiety.  And anxiety isn’t good for my disease.  We spent a lot of money on this family vacation and I want us to be able to experience as much as possible together.

I read Disney’s policy/info page on the DAC service and then decided I should write to them to inquire if I needed documentation of my disease when I went to visit Guest Services on our first day at the parks.  I received an email within a few hours letting me know they got my email inquiry and someone would be contacting me within 48-72 hours.  The next day I got a phone call from a Disney Guest Services specialist.  To be honest, I don’t remember her official title, but she was extremely pleasant and wanted to assure me that I didn’t need to bring medical documentation.  She explained that what the cast members (this is how Disney refers to all of the staff that work on site) needed was for me to explain the nature of my situation.  She asked me a few more questions and then said that when I spoke to my cast member to explain that I needed the ability to know when I would be allowed on a ride and might need to leave a ride cue very quickly.  She also said that should I be having a particularly rough day and find that I am not able to do the things we had planned that I shouldn’t hesitate to revisit Guest Services and explain that to them, because they could then hopefully help me to do things I missed out on.  How fantastic is that?  It was such a relief to speak to someone who was understanding of my situation, listened carefully, asked smart questions, and replied to my inquiries with kindness and concern for my well-being.  This is just one example of why I have really come to love Disney vacationing.

Will I go to Guest Services to obtain a Disability Access Card?  Yes.  Will I need to use it for the length of my vacation?  Maybe not.  Maybe I’ll have a good week symptom wise and won’t find myself needing to make a ton of visits to the restroom.  But if for some reason I am having a rough couple of hours, days, or for that whole week, it puts my mind at ease to know that I will be able to try to enjoy my time with my family as much as possible.

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