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Category: chronic illness (Page 6 of 13)

Whole 30 Autoimmune Protocol

January 16, 2014 / / 3 Comments

https://dcinematools.com/8u1zvm4 I feel like revamping my diet is a constant and ever evolving process. I don’t mean “diet” as in a weight loss program, but in terms of using proper diet to treat my Sjögren’s syndrome. About a year ago, I embarked on a Paleo eating plan, with the first month dedicated to the autoimmune protocol of the Paleo plan. The autoimmune protocol of any plan is super strict and is not even a diet. You can find an excellent explanation of the autoimmune protocol (AIP) HERE. It is a thirty day elimination period of the foods that are most thought to cause inflammation in the body. Due to a death in my family on Day 2, things did not go well. I know it is an excuse, but the amount of stress I was under was off the charts. I did however stick with the Paleo plan for the first half of the year, and I had some good results from it when I was compliant: most notably less pain and fatigue.

https://getdarker.com/editorial/articles/ysltggcdcj8 Things pretty much went to hell for me in the nutrition department (I like that word better than diet) when I went to Disney for my honeymoon. We came back the beginning of October 2013, the holidays came, etc. The worse I ate, the worse I felt. At first, it wasn’t noticeable because I was on a hefty dose of prednisone to quiet down some symptoms prior to my honeymoon, but as I started weaning the prednisone, it became apparent that my  food was affecting my health.

go site Part of the issue is not autoimmune related at all. At least I don’t think it is. Once I came back from Disney, I began to realize that some of my food issues had resurfaced. By “issues” I mean addictions to certain foods. I know being on the prednisone didn’t help with this, but things seemed to be worse. I was constantly craving processed food that were laden with carbs, sugar, and the such. This was not a new issue for me, but it seemed like now, the more I ate these foods, the worse I craved them. My weight creeped up and up and I felt like I was no longer in control. I know part of the carb cravings was related to the prednisone and that a lot of the foods I was eating are MADE to be addictive (i.e. McDonald’s), but at the end of the day, it was still my decision to eat them. They were my choices and I was making some poor ones at that.

https://www.mbtn.net/?p=dmlwes80z6 Meanwhile, since coming back from Disney, I had started exercising on a regular basis because I was on prednisone and that afforded me the ability to be able to do more with my body. The exercise actually helps my autoimmune symptoms, but I began to wonder about how much better I could feel if I reeled in my diet again. On a blog I follow, I read about the book: It Starts With Food by Dallas and Melissa Hartwig. This book changed my life. Seriously.

Buy Ultram Tramadol Online It Starts With Food talks about the Whole 30 eating plan which is basically a Paleo diet with some tweaks, mostly eliminating any type of sugars (except in fruit and veggies). The premise of the whole plan is that you need to eat whole foods in order to optimize your body’s health. While Paleo talks about how our ancestors ate as a premise for the eating plan, the Whole 30 talks a lot about the effects that these processed foods have on our bodies. It is a no-nonsense approach to getting healthy. No excuses.

https://mocicc.org/agricultura/jgfw4iqm I decided that I was going to do a Whole 30 (meaning you do the plan for 30 days with absolutely no cheating) and I was going to step it up by adding in the autoimmune protocol of the Whole 30. My plan was to start the day after Christmas but I had my first race, a 5K, scheduled for New Year’s Day and the authors suggested not starting a Whole 30 before any big physical event, because the plan itself can take a toll on your physical body the first two weeks. As much as I HATE starting a new lifestyle change on New Year’s, that was my start date.

https://penielenv.com/8jeaq128 Today is Day 16 for me. I will be honest, most of the 16 days have been pure hell because really, this is HARD!! I have a few expletives for it, but I will try and refrain…for now. Being on a Whole 30 AIP means I can eat only certain foods for 30 days and then I can start to reintroduce some healthy foods I omitted over a period of a few months to see if my body can tolerate them. By reintroduce, I mean like eggs, nuts, and seeds….not pizza, soda, or bread.

https://www.marineetstamp.com/qosv8mudbv What I can eat: meats (chicken, turkey, beef, fish); all vegetables except eggplant, potatoes, tomatoes, and all forms of peppers except black pepper; fruits; and healthy fats such as coconut oil and olive oil. Oh, and spices that are not seed or pepper based. That one gets tricky!

https://geolatinas.org/kqe5693 Yeap, that’s it.

https://www.yolascafe.com/q9v0zfw5r No grains of any sort, no dairy, eggs, nuts, seeds, sugar, artificial sweeteners, sauces, additives of any type. I am sure I am forgetting some things, but you get the gist.

watch And this means I cook, ALL THE TIME! It is insane how much I have used my kitchen lately.I try to double up my cooking so I have something to eat for breakfast and lunch the next day, but when you are making your own salad dressings (olive oil only!) and cannot grab a protein bar when you are starving after a run, it gets tricky…and time consuming. Cheating is not allowed because even the slightest bite of an inflammatory food can have a negative effect on your gut, which is thought to be the primary source of injury in autoimmune illness. Eating out is next to impossible although I was able to twice at Red Robin. I knew they were probably cooking in forbidden oils such as canola or safflower oil, but I didn’t think that would be enough to trigger me. And, I had to protect my sanity.

https://www.brigantesenglishwalks.com/cvntdj4o4s The first ten days or so was a nightmare for me, physically and emotionally. I had physical withdrawal symptoms, despite having had cut out gluten and dairy after Christmas. These symptoms included dizziness, dehydration, increased fatigue, headaches, and joint pain. For several days, it felt like my blood sugar was dropping several times a day. I stopped doing all exercise for the first week until I felt that things were more stable. I became extremely moody and restless as I started to crave all the unhealthy foods I was previously dumping into my body. Honestly, I couldn’t even be in the same room as some of my trigger foods such as pizza, chocolate, even gluten-free bread!! I even went as far as asking my husband to take some Kit Kats we had gotten at Christmas to work with him. He forgot. I was home alone. I tossed them in the trash. Swear to God.

https://purestpotential.com/liaguddk Things have gotten better though. The physical symptoms went away and despite weaning down my prednisone from 20 mg/day to 10 mg/day over the course of the past few months, my autoimmune symptoms are actually improving. The improvements have not been that drastic yet, except for my sleep. I am sleeping like a rock most nights for one of the first times in four years. I even dream now! And as anyone with an autoimmune illness knows, more sleep=less symptoms. Despite increasing my running mileage, most of my muscles and joints are pain-free on most days.My energy level has improved and despite having some mild respiratory issues around the holidays, my breathing is now 100% fine. No migraines and my mood is on an even keel. I have not noticed an improvement yet in my Raynaud’s or dryness issues and I would say that my dryness issues are even a bit worse. But it is January in New England; that is what always happens to me.

http://www.mscnantes.org/tjdbtqpm7 The past forty-eight hours has seen a dramatic improvement in my food cravings. This has been quite the blessing. Although temptation is still a challenge more times than I would like, I find that I am not thinking about food so much. I have also become quite a better cook over the past two weeks! It feels freeing to feel in control.

here I don’t know what the next few weeks are going to bring, but I am cautiously optimistic. While I do not think that this eating plan will likely “cure” me of Sjögren’s, I am hopeful that it will help control my symptoms enough to further improve my quality of life. Because as hard as this Whole 30 AIP plan is, it’s not half as hard as living with a debilitating, chronic illness.

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Disney Honeymoon Part Two: Getting Myself Around Disney World

November 11, 2013 / / 0 Comments

https://www.elevators.com/qdh09twcan I wasn’t sure exactly how I was going to do this whole Disney blog series. I originally was going to write about it park by park and I still may do that, but today, I want to go with what I think is most important and that is how I, Christine, a person with Sjögren’s syndrome, and a lot of complications that come along with that, managed to get around Disney for eight days.

https://geolatinas.org/pc7hnaq9o If you would like to read my first Disney Honeymoon entry, you can find it here: Disney Honeymoon Part One: Animal Kingdom Lodge.

Tramadol Overnight Delivery Mastercard Previously, I also wrote a blog entry, before going to Disney, that you can read here: To Scoot Or Not To Scoot, That Is The Question. It is the precursor to this blog entry about how I struggled with the decision about whether or not to rent a scooter for our trip.

https://www.mbtn.net/?p=4f6h1ai As all of you know who have been to Disney know, they have a bus transportation system that runs throughout the Disney property. We did stay at a Disney property called Animal Kingdom Lodge (AKL). I did quite a bit of research before we left to try and get an idea of how the bus system worked. I read a lot of commentaries, both positive and negative about the bus transportation system. Some people thought it was great, but a lot of people complained about it. There were complaints about the time it takes to travel from place to place, how long it takes for a bus to arrive, and disabled people taking up too much bus space. Yes, you would not believe how many people complained about that. See, each Disney bus has three available handicap spots for wheelchairs and scooters. When one is loaded on the bus, the regular seats get folded up and this results in less seats for walking people. People stated in the complaints that this meant that sometimes, they had to wait for another bus.

go to site Now, my husband and I went during low season (end of September) so I only have one basis for comparison. However, I never saw anyone have to wait for another bus because the one they were waiting for was too full. I’m sure it happens, but it didn’t to us. There are seats as well as rails to hang onto for people to stand. You can fit a lot of people in those buses. Regardless, I will say this: in a heartbeat and without a shadow of a doubt, I would prefer to NOT have this autoimmune illness and subsequent joint, temperature regulation, and fatigue issues and instead wait for a second bus to arrive. So I am sorry if the people who are able to do Disney on foot for a week feel put out. Actually, I am not sorry. I am just being sarcastic because this issue really fires me up.

https://onlineconferenceformusictherapy.com/2025/02/22/abqypbb Overall, I think the Disney bus system is a great way to get around. Yes, it does have its flaws. I found this most noticeable flaw to be trying to get from hotel to hotel. When my husband and I realized how long it would take to get to The Polynesian from AKL for dinner on our first night, we got a cab. It would have been about an hour and since we were traveling all day and exhausted, we thought it was money well spent. It ended up being cheaper than we thought because AKL comped us the ride to The Polynesian, which was about $22.

go to link For us, the other bus issue was how far our hotel was from everything else. We could get to Animal Kingdom in five minutes, but on a Friday evening, it took us over an hour to get to Raglan Road at Downtown Disney and we could have lost our reservation for dinner because we were late. Luckily, we did not and from then on, we made sure to give ourselves more travel time. Honestly, the travel time from AKL did not bother me, except for the Raglan Road incident, and it definitely would not deter me from staying at AKL again.

here The bus stops are right outside the hotel. For us, it was a minute walk from the hotel front door to the bus stop and about a five minute walk from our hotel room, as we were fortunate enough to have a room closer to the lobby. This is very important if you have a disability as some of these rooms are VERY far away from where you go to catch the buses. Try and put in a special request when you make a reservation. The bus stops are clearly marked with where to go for each destination. The buses run right from the hotel directly to the park and back with the exception of the water parks and Downtown Disney. There are stops in between for those destinations. I don’t think we ever waited more than ten minutes for a bus to arrive to pick us up anywhere, except for maybe one or two times when we waited twenty minutes. All the bus stops I was at were shaded and had benches; both of which were a big deal for dealing with my autoimmune issues.

here What you have to remember when dealing with Disney bus transportation is this: YOU ARE ON VACATION! Give yourself plenty of time to get somewhere, especially if you have reservations. Relax. Besides Downtown Disney and the water parks, the longest time it took us to get to a park or back was twenty minutes to Magic Kingdom. My husband and I used the time to talk about what we wanted to do that day at the park or on the way back to the hotel, we would do a review of our day. I would also plan things from my iPhone, including making reservations. Or, we would just chat it up with other guests on the bus!

Tramadol Order Online Overnight As I mentioned in my above blog entry, I did rent a scooter for the eight days we were at Disney. I have one thing to say about that:

https://purestpotential.com/1kf4n9udn BEST DECISION EVER!!

enter I rented the scooter from a company called Walker Mobility in Orlando. Despite the fact that they are not an officially approved Disney scooter company, I would never use anyone else. The only difference is that you have to meet them when they drop off and pick up the scooter; rather than leaving it at bell services. It’s worth it. They came highly recommended and I cannot say enough good things about this company. I also found they had the best prices. I paid $125 to rent the scooter for seven days. I rented a three-wheeled Go-Go Elite Traveller Plus scooter. I absolutely loved it because I had no experience with scooters and it was easy to navigate and it took sharp corners very easily. Other Disney guests commented on how well I navigated some of the lines for rides with sharp and frequent turns. It does have a weight limit of 190 lbs which luckily, I am under these days so I would highly suggest this scooter. The basket is a little smaller than the other scooters, but I am a big fan of traveling light at Disney so it really was not an issue.

https://www.marineetstamp.com/qdt3q45 I learned that there are some things which are important to have when renting a scooter at Disney. I always had a hotel hand towel on the leather seat to keep from burning my legs and I kept a trash bag in the basket to cover the scooter when it looked like it would rain. Sunblock is essential for your the top of your hands and a coil key ring for my wrist held the scooter key, kept it secured, and made the key easily accessible. I also always made sure I charged the scooter in our hotel room every night. The battery lasted me thirteen hours in Epcot one day without recharging.

https://mocicc.org/agricultura/wh2c33opq Out of the eight days we were there, two were travel days and I used the scooter a total of two and a half days: one full thirteen hour day in Epcot, a half day at Downtown Disney, and a day at Hollywood Studios. Every other time, I walked. There were times where I pushed myself, but being with my husband and doing Disney on foot IS different than doing it in a scooter, so I wanted to do as much as I possibly could on foot. That being said, the time I did spend on the scooter saved me and made the trip possible. The day at Epcot would have been half as long, if it even happened at all. I was exhausted and in some pain from walking Animal Kingdom the day before.The sun and heat were tough that day and not having to use energy walking made the sun/heat much more tolerable for me.

https://www.brigantesenglishwalks.com/2ub8lc95 During the days I did use the scooter, most of the time I would park it and walk around a small area, such as at World Showcase in Epcot. Other times, I would park it right outside an attraction and walk into line. Finally, there were times where I was hurting or so tired that I would drive the scooter right up to where I boarded a ride or attraction. The cast members are very helpful on letting you know how to proceed once you get to an attraction so I am going to say one thing and this is important:

https://lpgventures.com/3sp95j1pvl DO NOT WORRY ABOUT USING YOUR SCOOTER AT DISNEY!!

https://danivoiceovers.com/vjo69e6ro I stressed out about this before the trip and it was not worth it. There are plenty of spots to park it, usually where the stroller parking is and like I said, cast members will direct you for everything else. Yes, Disney makes it that easy!

https://www.yolascafe.com/ru7ecxyrdt I had also stressed out about using a scooter on the buses. Again, a lot of worry over nothing. I will advise that if you have never used a scooter, go to a grocery story, Target, Walmart, etc. and practice on one of theirs before your trip. I practiced parallel parking at a store and that was invaluable as you have to parallel park your scooter on the Disney buses. If you are able to, some drivers will ask you to get up, sit in a regular seat, and they will do it for you. Regardless, you sit in a regular bus seat after you park the scooter anyways….if you are able to. I think there was only one time that I had some difficulty with the scooter and the bus, but I just took my time and it all worked out. I ignored the people impatiently waiting to get on the bus and did my thing. Scooters and wheelchairs board first and get off last. This was another reason I loved the Go-Go Elite scooter; it was much easier to get in and out of the small bus spaces. After one or two times getting on/off the bus, you will be fine.

enter One other issue to be aware of when using a scooter in Disney is other people. I am proud to say that even as a new scooter user, I never once ran into a person. But, you have to be careful. You can be the best scooter drive in the world, but people DO NOT pay attention to where they are going. I thought the bigger issue would be little kids but it was actually the adults I almost mowed down a few times. A lot of people have no problem cutting in front of you or ignoring you. Some people are just distracted by the awesomeness that is Disney.

There is a lot written online about people who use scooters at Disney and how they crash into people, don’t watch where they are going, etc. I have to tell you that I did not find that to be my experience. On the days that I walked, my issue was people not paying attention when they were pushing their strollers. Have you seen the size of strollers nowadays?!? Some of them were the same size or bigger than my little scooter. I am not even joking. I found adults to be more reckless with the strollers than the scooters….by a long shot. And several times I was hit by a stroller while walking and when you have joint issues, that is not fun. But, I brushed it off and continued to enjoy my amazing vacation.

That’s my story on the whole Disney experience via bus, scooter, foot, and taxi. I hope it was helpful. I am sure there are things I left out so please feel free to comment below or contact me with any questions.

Yoga and My Body

October 30, 2013 / / 2 Comments

This past April or May, I started taking a gentle yoga class at my gym. I have been pretty consistent with attending the class, with the exception of a period of time this past summer when I was not feeling well and at the doctor all the time. It is a gentle yoga class with a wonderful instructor, who has gone out of her way to show me modifications to help accommodate the joint issues with my wrists and knees.

Since I started the classes, I have seen some dramatic improvements in my flexibility, strength, and balance. As some of you may remember, I dealt with a bout of Guillain-Barre in February 2012 which required me to go through months of physical therapy to regain full functioning of my legs. However, I continued to struggle with mild balance issues at times. Since starting yoga, my balance issues have all completely resolved. I probably have better balance now then I did pre-Guillain-Barre.

I have noticed in my last several classes how far I have come in the class in terms of being able to do and hold the various postures. Two in particular have always challenged me and this week, I have been able to do both of them with a lot of effort, but no pain.

Something very unique happened to me today though in class. Yoga is a very get-in-tune with your body type of exercise. At the end of class, we get into a position called Shavasana or in layman’s terms, the “corpse pose.” I know, I know. Makes you want to run right out and sign up for yoga. It is actually a very important part of the class. It is the chance for the body to regroup and reset itself. It is almost like a deep, meditative state and is especially important for someone like me, who frequently has a hard time quieting her mind.

So after what I thought to be a very successful yoga class for me, I got into Shavasana and I began to have all these thoughts running through my head. Emotions flooded me. It reminded me of the few times when I went to acupuncture and I would start spontaneously crying for no reason. The thoughts that flooded my mind today had to do with my body and how much I have started to come to terms with it, flaws and all.

Until recently, I have always been at war with my body for one reason or another. I didn’t like the way I looked: my hair was too curly, I had too much body hair, I was fat, the list went on and on. I had cancer in my mid-twenties which of course wreaks havoc on your body and self-esteem. Then came the autoimmune issues. They have caused me to be at war with my body more than any other thing that has ever happened to me. I have been working hard over the past few years on changing the way I look at myself and more importantly, the way I talk to myself. But there is something about yoga that has accelerated that process for me. Yoga allows me to see what my body is capable of, rather than how it has betrayed me.

While in Shavasana this morning, all I could think about is all the amazing things my body has done for me. Yes, I know I was supposed to be meditating and keeping my mind clear, but I figured this was all therapeutic for me, so I let myself experience it. My body has endured so much. In periods of my life, I have dumped a ridiculous amount of toxic food and drink into it, while avoiding any type of exercise. My body has endured up to fourteen hour shifts as a nurse; most of it on my feet. I have deprived it of sleep. It has undergone long and arduous tests and treatments; everything from months of radiation to bronchoscopies to surgeries. It has survived the invasiveness of it all. My body has endured toxic medications. It has enabled me to show love and affection. It has allowed me to go on adventures and experience a small part of this world. It has served me well when I have been of service to other people. This body has feed the hungry and held the hands of the suffering. It has made a difference in the life of others.

Lying still on that hard floor this morning, I became acutely aware of how amazing my body is. It is stronger today than it was yesterday. It is stronger this year than it was last year. This has not happened by chance; it has happened because I take better care of it; much better care.

As all these thoughts were going through my head this morning while lying with my eyes closed and I began to cry. It wasn’t a sobbing type of cry, but more of a silent tear down the cheek type of cry; the kind where you try to stop it, but the tears keep coming. Of course as this was happening, I immediately thought about the fact that I was in a room with about twenty other people and they might see me all teary and think I was a nut. But then I realized it didn’t matter. It was my yoga experience. My time to be aware of and rejoice in my body.

So thank you yoga.
And of course, thank you body.
Thank you for serving me well.

Running, Sjögren’s, Races, and Disney

October 19, 2013 / / 2 Comments

As a child and teenager growing up, I was not the athletic type. One of my worse memories as a freshman in high school was having to run a hundred yard dash in gym class. And then a relay. A relay involves team members and after the hundred yard dash, I was known to be the slowest runner. Of course you know what that meant. I was the last person picked for my relay team. I was embarrassed and humiliated; which was a common occurrence for me in gym class, except for when I was playing volleyball. I was, and still am, decent at playing volleyball.

Over the past several years, I have been working on my fitness level. I have lost about sixty-five pounds and I am probably in the best cardiovascular shape of my life. My joints are often a mess but my heart does just fine. I pale in comparison to many other people who can spend hours at the gym, but I know I am doing the best I can with this lousy autoimmune illness, so I try not to compare myself to others; just to myself.

About two years ago, I decided I wanted to be a runner. My Sjögren’s related joint pain had quieted down, thanks to hefty doses of prednisone, and for some reason, I thought running would be a good idea. However I only lasted several weeks before my knees started to act up in a big way and I was afraid that I was doing more harm than good. To be honest, I also didn’t know what I was doing in terms of stretching, cooling down, and all those other important things that have to do with running. I had also started to wean down on my prednisone to a point where I came off it completely. Not only did that affect my knees, but most of my upper joints as well. At that point, I decided that as a person with an autoimmune illness, I would never be able to run again.

Things have changed since then. I have started several different alternative medicine treatments, which have enabled me to tolerate the lower doses of prednisone much better. I am carrying less weight and my fitness level has improved. So I have made two very big decisions:

I am going to run again. Or at least, I am going to try very hard to run again.

That was the first decision. I came home from my honeymoon in Disney and decided that I was going to try running again. The reasons are varied. To me, running represents pushing my body beyond its limits. And trust me, my body has a LOT of limitations, and I am tired of them. I want to be stronger and I want that endorphin rush that comes from running and from pushing my body to the limit. I want to do something that to me, and to most Sjögren’s patients, seems like the impossible. Over the past two years, I have done quite a few things that at one time, seemed impossible for me to do. The biggest example is that I am in the process of publishing my first book. Another example is the $7000+ dollars I raised in the period of one month to publish said book.

I am doing the running thing quite a bit differently this time around. I am doing my homework by researching training techniques, especially in relation to injury prevention. Thanks to yoga and Pilates, my hips and back should make it through the runs. My bigger concern is my ankle and knee joints. I have an old ankle injury from a fall in 2012 that so far, seems to be holding up pretty well thanks to yoga. Before I started taking yoga classes, I was looking at the possibility of an ankle surgery, but that is no longer an issue. After five runs, I am already starting to feel it in my inner knees, however I am not sure if this discomfort is joint related or muscle related as the pain is different than my typical knee joint pain. My body could just not be used to running. However, I have incorporated some pre and post-run stretches into my routine, as well as icing my knees after each run. This helped quite a bit after today’s run. I have also learned that I need to do better with my nutrition and on strengthening my core. Luckily, I love Pilates. I feel that Pilates and yoga will go a long way in helping me with not only my autoimmune symptoms, but with my running as well.

When I tried running two years ago, I found this awesome running store in a town about forty-five minutes away and got properly fitted for running shoes. Even though I stopped running at that time, I found that running sneakers were the best sneaker for me because I overpronate when I walk. Before we went to Disney, I went back there to be fitted for another pair of sneakers. Earlier this year, I developed plantar fasciitis and was referred to an orthotics specialist who fitted me for orthotic inserts that go in my sneakers. I think that those have been a big help with running.

So I am taking it slow, very slow. I have friends who are helping me out by providing me with knee strengthening exercises (thanks Heather!) and I continue to research and learn as much as possible. And I do not run. I do a run/walk with my goal of doing a mile in fifteen minutes three times a week. That’s it. When I can do that for several weeks, I will consider upping the distance and/or the time. I think last time I attempted running, I tried to do too much, too soon. I will be smarter this time.

I am well aware that this running thing could not work out, which is why even though I have been mentioning on my personal Facebook page that I have started to run, I haven’t been as vocal about some other plans that I have. The reason is simple: I am afraid that if I say anything publicly and then fail at running, I will look like a failure. Then I realized that just the fact that I am TRYING to run again makes me a success. The fact that I am willing to go outside of my comfort zone makes me a success. But there is something I want to do more than anything:

I want to run a race.
Specifically a half marathon at Disney World in January 2015 for Team Sjögren’s.

After spending a week at Disney and then hearing about my friend, Heidi, who has Sjögren’s, training for her first Disney marathon to take place this January, I decided that I want that experience as my goal. A goal so seemingly insurmountable that it is almost laughable to me. But I want it and I want it bad. Part of it is probably because I like the challenge of trying to accomplish something that I was told I could not do. I know that there is a strong likelihood that if and when I do a race, I will finish dead last. I am O.K. with that. I just want to finish.

So I have made some other running goals. Five months from now is the Holyoke Road Race. It’s a pretty big deal in the area where I live and it is the day before the big St. Patrick’s Day Parade in Holyoke, MA. I have always wanted to be a part of it but never thought it was possible. It is a 10K race which means that the course is six miles.

Six miles.
Good Lord.

Then again, a half marathon is 13.1 miles so I better start somewhere. There is also a race Memorial Day weekend which I would LOVE to do. It is called the Run To Remember race in Boston and its goal is to honor fallen Massachusetts law enforcement officers. There is a five mile course and it runs through downtown Boston, one of my favorite places in the world. I think that if I can get through both of these races, including the training, I will be able to make a more firm decision about booking tickets for Disney in January 2015. At least that is the plan my husband and I have come up with so far!

There. I have said it. I am going to run and try to do a race…or several races. I will stay positive, be gentle with myself and my efforts, and try to remember that this will take time and a lot of patience. I am also VERY receptive to any suggestions and advice that any of my readers have for me. Please fell free to leave them in the comments section below.

Traveling To Disney With Sjögren’s

September 13, 2013 / / 1 Comment

I have decided that to take blog vacation. This means that after today I will not be accessing my blog or my Facebook blog page so if you leave comments please be patient because they need to be moderated before they appear on the blog. This is a bit of a big deal for me because in the three and a half years I have been blogging, I have never taken a planned break. On the occasions where I have been away from home, I have still checked my blog via iPhone. The reason for this was simple. I have worked so hard at developing Thoughts and Ramblings and my readership that I was afraid to not be on top of things. I didn’t want to lose momentum. However a lot has gone on recently with the publishing process of my first book, Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome, the Kickstarter funding project, getting married, and dealing with new health issues. I think overall I have done a good job in keeping up with my blogging/writing as well as the numerous e-mails and other correspondence that has resulted from all of this. But it’s time. Everyone needs a vacation.

I will be off the Thoughts and Ramblings grid until about October 2nd. During that time I will be going on our eight day honeymoon to Disneyworld which is the subject of today’s blog entry. I have only been to Disney once and I was about twenty-one years old. I was in college and three of my friends and I (hi Tina, Lauren, and Ellen!) drove there for spring break. We stayed at a Red Roof Inn somewhere off the Disney property and endured the very long ride both ways. We were young and relatively broke but none of that mattered. We had a great time.

A lot has changed since that Spring Break trip all those years ago. There are new attractions at Disney; a whole new park even as Animal Kingdom was not built back in the early 1990’s. New resorts, new restaurants; a whole different experience probably. A lot has changed for me since then as well. I’m twenty years older and let’s face it, not in the best of health.

Traveling for me is difficult. Since I got sick in early 2008, I have only flown once and it was for a two day trip to Ohio; about a two hour trek. I ended up in the hospital within two weeks of coming home. The rest have been car ride getaways. The longest was about five days and that was one time while a few others have been two-four days. I can say that in the last five years I have never taken a trip that has not made a negative impact on my health in some way; some bigger than others. But I plan as well as I can and just take the risk. Life is too short not to.

This trip is a biggie for someone with Sjögren’s. Longer time in the air flying. Have I ever mentioned how dry airplanes are?? Lots of physical activity since it is Disney. Loads of food restrictions to deal with. Heat and sun since it is Florida. Standing in lines. Traveling with a ridiculous amount of medications, supplements, and medical supplies. However I have done quite a few things in preparation for this trip that I think will work to my advantage on this amazing honeymoon that we have planned. They are as follows:

* The single most important thing we did when planning this honeymoon was to not book it for right after our wedding. I was a little concerned that going on our honeymoon four months after our wedding would take some of the magic or fun out of it. Absolutely not. I am extremely excited for this trip. Weddings are exhausting no matter who you are. I am a million times more rested and ready for this trip now than I would have been back in May. We had gone away for a few days to a bed and breakfast in our home state after the wedding but that was MUCH different than this Disney trip. Plus we didn’t do much while we were away in May. My full attention is on the experience we are going to have on this trip rather than reliving all the memories and details of the wedding. I would strongly suggest doing this to any bride and groom, not just to those who have to deal with chronic illness. I was married before and had a honeymoon right away so I do have a basis of comparison. Do it the way I did this time around. It will be better, I promise!

* We booked a hotel on property at Disney. Besides the fact that it is just a cool experience in itself, it cuts down on travel time to and from the Disney parks, attractions, etc. and it saves on having to walk from the parking lot to the parks and back.Staying at a Disney property also makes you eligible to use their luggage service. You check in your luggage at your home airport and you don’t see it again until you get to the room at your resort. Same for the trip home.

* Pre-booked many of our reservations, especially dinner reservations. While this is typically suggested for anyone wanting to eat at Disney, it is also important for someone with food restrictions because it gives the restaurant a heads up as they were told about the restrictions when the reservation was made. We were also careful not to overbook so that we had some flexibility in case I was struggling with my physical issues.

* Got a letter from my rheumatologist stating that it was difficult for me to stand for periods of time and difficult for me to be in direct sunlight or excessive heat. There is something at Disney called the Guest Assistance Card (GAC). The GAC card alerts the cast members of your limitations so that appropriate accommodations can be made. For example, if there is a long line for an attraction, they may have me wait in a shaded area without losing my place in line. You DO NOT need a doctor’s note to obtain a GAC card but I thought it helpful in case they need clarification on what to put on my card as they are not all the same.

* Got a letter from another doctor stating that I need to be allowed to bring prefilled syringes on the plane. I also bought this awesome small, collapsible cooler bag for my carry-on to keep the syringes cool as they need to be refrigerated. It will also be helpful to store my refrigerated eye drops in it.

* I sucked it up and rented a scooter for the week. There is a previous post on this from last week if you’d like to read it. I will be curious to see how much I use it. The scooter gets delivered and picked up right to your hotel.

* Starting what will hopefully be a short course of prednisone in preparation for my trip and during it as well. I am looking forward to it. My rheumatologist felt that I should have been on it five months ago.

* I have never used a scooter before so I went to Target and practiced on one of theirs. That was an excellent idea and I highly suggest it if you rent a scooter for the first time. Better to crash into a display at Target than someone’s leg at Disney!

* There are several grocery stores in Orlando that offer delivery service. I submitted an order with Orlando Grocery Express and it will be delivered the morning we arrive. The great thing is if we are not there, our hotel will keep it for us until we arrive. I did this for several reasons but mostly because I drink an obscene amount of water so I ordered a few cases along with some drinks my husband likes. I ordered some gluten-free snacks and breakfast items as I am not a big breakfast person. I also came up with the idea to order some toiletries, such as shampoo, soap, and face wash, so there is less to pack in the suitcase. Less toiletries equals more room for medical supplies.

* Speaking of, I raided the trial size bins at several local stores. Target has the best selection and amount of trial size items.

* We have one tour at Disney that promised to be challenging for me physically, the Wild Africa Trek at Animal Kingdom. I almost said forget it and then that little voice in me said “go for it, you only live once.” However we booked it for early morning the day after we get there. I didn’t want to wait until later in the week when there might be a chance of feeling more exhausted.

* I did a lot of planning via books and online. You would be amazed at how much is out there in the internet world about traveling to Disney with a disability. A special shout out to my friend Kristen at Sjoggie StAHMer. She has Sjögren’s and has traveled to Disney with her husband and young daughter. She had some excellent advice!

* Booked our honeymoon for one of the least busiest times at Disney. This will mean less crowds and most likely, shorter waiting times.

* Booked airport parking with a company that handles your luggage for you on and off the shuttle bus. I am traveling with someone but he only has so many hands.

So that is pretty much it. I think the most important thing to remember when planning a trip like this is to use whatever means are available to you to protect your health. The more energy you can conserve during the trip, the more likely you are to enjoy it. Those of us who live with any type of autoimmune illness or chronic disease tend to have less opportunities to travel than many people so it is important to make the most out of our trips. Especially honeymoons!

I am thrilled beyond belief and feeling blessed that my husband and I have this opportunity. As excited as I am, I am especially excited about the opportunity to spend EIGHT whole days with my husband. No work, no commitments, no places that we have to be. Eight days with no medical appointments or afternoons on the phone arguing with insurance companies. No bed to make in the morning. No dishes to wash.

Just him and I.
Perfect.

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