chronic illnessfamilytravel

5 More Lessons I Learned From Traveling To Disney World With Chronic Illness

5 More Things About Traveling To Disney World With Chronic Illness
You can click here to see my first post on our Disney vacation!

Here are a couple more lessons I picked up on our trip about traveling to Disney World with chronic illness!

6- Try to spread your days out if possible, especially if you are a spoonie or have a small child. We opted to get 6 day passes versus 4 day passes for several reasons – 1) the cost really wasn’t that different (when we purchases our tickets there was only a $25 price difference between the 4 day & 6 day passes) and 2) this allowed us to freedom of spending as much or as little time in the parks as we wanted. Because we knew we had 6 days, we didn’t feel the pressure to cram seeing all of the Magic Kingdom in one day. It also gave us the freedom of having shorter days if we felt like it (most days we were on the shuttle to the parks at 9 and home by 2:30 except for Animal Kingdom). I know that I could not have handled full days and I definitely know Abby would have been worn out. She was knocked out by the time we left every day! Plus it gave us the freedom to enjoy the relaxing pool and lazy river in the evening at the resort!


7- Make time for the non-ride attractions. Being post-op and having a toddler, we didn’t have the option of the big rides this go-round (thinking Everest, Space Mountain, etc) so it encouraged us to explore some of the other options the parks have to offer. If you go to the Animal Kingdom, you MUST  go see the Lion King & Finding Nemo shows! Fantastic! Animal Kingdom also offers a lot of walking trails which I have heard are definitely worth it (we didn’t do the trails since I wanted to give my poor husband a break pushing me around). One of Abby’s favorite places was the Boneyard at Animal Kingdom which combined two of her favorite things: slides and dinosaurs. How can you not smile when you see this face?

Animal Kingdom Boneyard Slide

Another favorite at the Magic Kingdom was Mickey’s Philharmonic! She actually cried when it was over!


 8- Pass over the camera. Since I was blessed with my new DSLR, I tend to find myself doing most of the picture taking. Not that I have mastered the camera by any stretch of the imagination but I am more comfortable with it than John so I think that’s why I tend to be the one behind the camera. It showed on this vacation. We’ve got loads of the most wonderful pictures of Abby and Daddy, as well as pictures with my family but unfortunately I’ve found myself in very few of them which is a bit sad! So definitely remember to pass the camera every so often! P.S. The cast members of Disney are awesome at taking pictures using your camera at Character Spots (as well as the professional putting images on your PhotoPass).

9- Enjoy the wonder through the eyes of your child! It has been a long time since I had been to Disney (1988 to be exact) so quite a bit had changed and it was almost like it was a first-time trip for myself but watching Abby take in all the sights was amazing! I had to remind myself of this the night of the Electric Parade. I really wanted to catch some good shots but I couldn’t get the settings right on my camera and the longer I fooled with it, the more I realized how much I was missing! So instead I put the camera aside and enjoyed watching Abby watch the parade – something I would have missed if I had stayed behind the camera!  I loved watching her eyes light up when she got to meet Tiana in person or how big she smiled as she gave Buzz Lightyear a high-five. I loved watching the wonder as we watched the puppeteers bring Finding Nemo to life. I loved how excited she got to ride Dumbo or the Triceratop Spin or even the PeopleMover (which she thought was a big deal).

Disney Dumbo People Mover Dinosaur

10- Finally – enjoy yourself! Before this trip I never understood why families would choose to go back to Disney year after year. I mean, don’t you want variety?! Now I know why. There is something truly magical about Disney and there is just something about it that brings family together. John is not a huge theme park roller-coaster guy but he even loves Disney. My parents are huge Disney fans and love going just the two of them (of course they absolutely loved having both grandbabies on this trip!). Even with all of the obstacles (pain, being post-op, etc) I had the most wonderful time and am already counting down to our next trip! I am sure I will have even more to share about traveling to Disney World with chronic illness each time we go! I don’t mind becoming a professional 🙂 Disney 2013 here we come!


chronic illness

Celiac Vaccine on the Horizon

I’ve been diagnosed with Celiac just over a year now and there are still days that I wish that I could woof down a big bowl full of gluten with no ill side effects (probably the same way a diabetic longs for carbs without having to dial up the pump or take a shot). If you are involved with social media at all, I am sure you caught on that this past Friday was National Donut Day and both Krispy Kreme and Dunkin Donuts were giving away free donuts. This is what filled my Twitter stream. ALL. DAY. LONG. It was not a good day to be a Celiac. I ended up shutting down TweetDeck to avoid reading any more about. If I could have one day with Celiac, it would surely include Krispy Kreme donuts, a spicy chicken sandwich from Wendy’s, and stuffed crust pizza. Of course I would gain 10 pounds that day but I think it would be worth it. It may even be possible at some point in my lifetime.

There is now a vaccine in phase I trials for Celiac disease. Dr. Vikki Peterson offers a great explanation of the current status of the vaccine:

Dr Robert Anderson, PhD from Australia announced this month that after several years of research his vaccine was ready for a Phase I trial. I remember meeting Dr Anderson 2 years ago at a National Foundation for Celiac Awareness conference where he shared with me his goals about this research.

The study was composed of 34 celiacs, 19 people of whom received the vaccine while 15 received a placebo of saline water.

The participants followed a strict gluten-free diet and were of the DQ2 genotype (genetic profile) for celiac disease. DQ2 is the most commonly known gene for celiac and it is estimated that 80% of celiacs carry the gene.

The goal of the phase I trial was to assess the weekly injectable vaccine for safety, tolerability and efficacy. The vaccine is derived from wheat and barley and contains 3 peptides (or protein fragments) that commonly create an immune reaction.

The side effects of the 19 people tested included:

GI distress, typically similar to that felt with inadvertent gluten ingestion.

One individual had to withdraw from the study because the digestive complaints were too severe.

7 out of the 19 suffered from nausea,

2 suffered from severe nausea and

2 others vomited shortly after receiving the injection.

The mechanism of the vaccine is to target the immune cells (T cells) that are specific for celiac disease and have them instead be created specifically against the vaccine. In turn these T cells, once specific immunity is developed, create an immune substance called gamma interferon, which is critical in developing a specific immunity. This mechanism would be similar to the one used in allergy shots where someone is desensitized to something they’ve been reacting to. The injections are designed to prevent the typical immune reaction of the offensive substance from occurring.

As a side note, gamma interferon, when aberrant, is associated with autoimmune disease, meaning the immune system gets overstimulated to a point where it starts attacking the body itself instead of the foreign agent.

Only 4 of the 19 participants generated these desired type of T cells, although Dr Anderson seemed pleased with this response, since he considered the trial a success.

There are considered to be over 60 peptides (pieces of protein) that are responsible for the reactions against gluten. This vaccine includes only 3 peptides, but its creators feel that these account for the majority of the negative reactions that are seen.

As mentioned above, this particular vaccine is only applicable for those who carry the DQ2 genes. In regard to celiac disease, we know that patients with the gene DQ8 can also develop the disease and it is thought that many other genes are involved as well. DQ2 is the most prevalent so it definitely made sense that a gene specific vaccine would be created for it, but the vaccine would not be universally effective on all celiacs.

Of course this vaccine does nothing for those suffering from gluten sensitivity, who have a different genetic profile. But gluten sensitivity is a newer player in the gluten intolerance arena, so no big surprise that a vaccine would focus on those with celiac disease.

With 4 individuals out of 19 generating the desired T cell response, that puts the “success” rate at 21%. I personally wouldn’t consider that a success, but I’m often surprised at what is acceptable in the drug and vaccine field.

While the trial was considered successful, even if all goes according to plan there would not be a vaccine on the market before 2017.

So what are my personal conclusions?  From the science perspective I share Dr Anderson’s excitement in developing a mechanism that causes the immune system to react in the way he had envisioned it.

But from a clinical perspective I have concerns. There has never been a drug or vaccine with zero side effects and I’m sure this one, should it make it to market, will be no different. What will these side effects be and how long will the vaccine need to be on the market before they are realized? No one yet knows.

The “effectiveness” according to this trial was 21% of those who received the vaccine. But remember that the vaccine is only appropriate for about 80% of the celiac population. With its current efficacy, a population of 100 people would only find 17 potentially benefitting from this vaccine, excluding any side effects.

So where does this leave us? No different really than we were before this data came out. The truth of the matter is that at this point and likely for several years into the future, our goal must be timely diagnosis of celiac disease and gluten sensitivity, gluten elimination, and an effective program to heal the gut while reversing as much gluten-induced damage as possible.

I have read through many scientific articles on the new vaccine but Dr. Peterson’s explanation was extremely helpful by translating the data into more user-friendly terms. One article likened the vaccine to the use of insulin for a diabetic – the vaccine won’t cure the disease but it will allow the body to tolerate the gluten (as insulin helps a diabetic tolerate and process sugar/carbs). From what I’ve gathered the vaccine would be taken on a regular basis (its not a one-and-done deal).

At this stage in the game, you wouldn’t find me signing up for the vaccine. Personally I don’t find 4 out of 19 (21%) successful and without knowing which genotype of Celiac I carry, I wouldn’t want to risk the side effects. I would want to know my genotype before taking it.  I also wonder about the cost. I would think, at least initially, that the cost of the vaccine would be quite high as I would think that it would take some time, if ever, that insurance would cover such a vaccine when following a gluten-free diet is more effective.

Would I love to be able to sit down a restaurant and order off the menu without having to google the ingredients or enjoy a slice of pizza worry-free? Absolutely. Would I take a shot to do so? Not a this. Ask me again in a couple years as they hope to have the vaccine on the market in 2017.

If you have Celiac, what are your thoughts on the new vaccine? Would you take it?  For other spoonies, if there was a vaccine for your illness but there was a low success rate and high chance of side effects, would your risk it?


chronic illnessfamilytravel

Celebrating (& Surviving) at the NC Zoo

Abby loves animals. I mean LOVES. Names of animals came right behind “mama” and “dada” as her first words. We have a baby animal book that is read a minimum of 3 times a day and a zoo puzzle that accompanies her pretty much wherever she goes so when we were starting to think of ideas of what to do for her birthday, a trip to the zoo was a no-brainer.

We are lucky to have several small zoos around us that we have been to before (and will likely visit again this summer) but we wanted to do something new and bigger for her birthday so we planned a trip to the NC Zoo. My family drove to VA and luckily John’s family lives really close so we met up and planned for a picnic and exploring. Unfortunately I didn’t factor my spoons into the equation.

Two things we ran into – 1) I think everyone in the state had the same plans for Saturday so the place was absolutely packed. We stood in line close to an hour just to get tickets. Thankfully the place is huge. 2) The place is huge. I mean HUGE. I knew it was big. I looked at the map and talked with some friends who had previously visited but it wasn’t until we pulled in that I actually got it. The Zoo is divided into 2 sections: Africa and North America. The zoo recommends planning a minimum of 2 hours to see Africa as it included 2 miles of trails. North America includes 3 miles of trails and takes a minimum of 3 hours to see everything. If you do the math you can see that to see the entire zoo would include 5 miles of trails and that is not including the distance you may have to walk from parking to the front gate (we ended up in overflow parking which was way out in the middle of nowhere).

So here are my tips for planning and surviving a trip to the NC Zoo as a spoonie as well as pictures from our fun day:

1) Plan to go on a weekday (think Tuesday-Thursday) to avoid crowds. I would also plan to visit in the Spring or Fall versus Summer to avoid the heat.

2) Divide the Zoo into 2 trips – Africa one day and North America the next (we plan on hitting up North America this fall!)

3) Plan for frequent rest breaks. The exhibits are spread out and there are a lot of hills but there are plenty of benches for rest stops between them. You may want to take advantage of the wheelchair rental (both manual and motorized) as well.

4) Pack snacks and drinks! There are gift shops but they are at the very front of the park or in the dead center. If you are prone to drops in blood sugar, you will definitely want to make sure you have something on hand. You cannot take a large cooler into the park but you can carry food and drink in a backpack.

5) Have fun! Realize that you may not see it all and that is ok! Had I had it in my head that we had to see everything before we left, I would have been very disappointed but thankfully I was given a heads up so we were sure to enjoy everything that we were able to get to. Make the trip as enjoyable as possible by taking it slow and taking it all in!

Do you have any summer travel tips you would like to share?