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Category: arthritis (Page 1 of 3)

The Power of Running

March 18, 2014 / / 0 Comments

I just finished my last training run in preparation for a race that I am running (I do a run/walk combination) in four days. The race is a 10k event (6.2 miles) and is the second race I am going to be competing in since I started running five and a half months ago. The first one was a 5k (3.1 miles) on New Year’s and since then, I have been training for Saturday’s race with my friend, Heather. My husband is also going to be running that day, albeit at a much faster pace than Heather and I.

This race is a big deal for me. Two and a half miles of it is uphill and honestly, I have never even ran 6.2 miles in my whole entire life. I have done three miles…four miles….and a one-time five miler, but never more than that. But, I have been consistent with my runs and since I am still dealing with some type of upper leg injury that has yet to be resolved, that is a major accomplishment. Actually, it is a major accomplishment that I can even run at all considering the physical obstacles I have endured and worked through over the past several years. I cannot lie though, I am a little scared. Scared of how my body is going to react to pushing it further than it is probably ready for.

I have been wondering lately how the heck I got here; what fuels me to want to do this running thing week after week. I know a big part of it is the endorphins and how good they make me feel. When I started a new job recently, I took almost a week off from running to try and manage the overwhelming fatigue I was having from going back to work after five years at home and you know what? I missed it, a lot. Running has become my primary way to deal with stress. A much healthier way than eating my way through stress.

So many other aspects of my physical self have improved over the past few months. A few nights ago, I went to scratch an itch on the back of my leg and when I touched my leg, I felt what I thought was swelling. Because of the Sjögren’s, I get all types of weird things that pop up here and there and I am very in tune to any changes in my body. Well, apparently not that in tune because as I felt my leg more thoroughly, I realized what a fool I was. My leg was not swollen or messed up from autoimmune issues…. I had developed some serious MUSCLES in my legs. It still amazes me when I look at my legs. They don’t look like mine at all anymore.

My cardiovascular status has improved significantly. My knees no longer hurt at all when I run and when I first started running, my knees hurt so bad, I didn’t think I would be able to continue running. My asthma has remained stable and despite the fact that I am on the lowest dose of prednisone I have been on in six months, I can run/walk three miles in less than fifty minutes. Not a world record breaker by any means, but a success nonetheless.

I realized something this afternoon though. It was one of those breakthrough moments as I was driving home from our training run. I was crying in the car because of this realization. Aside from all the physical benefits that becoming a runner has given me, I have figured out the one major reason why I love running so much, despite all my constant complaints to my husband about how much I hurt sometimes:

Running makes me feel powerful.

RUNNING MAKES ME FEEL POWERFUL!

When I run, I am not a patient. I am not an illness.

When I run, it is me and my body battling itself, and I always win. Some days more so than others. But the fact that I get off the couch and go, that is me winning.

When I run, I do not feel like the fat girl who was teased in gym class for being so slow and awkward. I feel the strength in my legs and the air racing in and out of my lungs. I am not the awkward fat girl. I am a runner.

When I run, I hear the soothing rhythm of my feet striking the ground.
The sound of power.

Running makes me feel powerful because I am doing what I was told I would never do. It is me defying the odds and refusing to let my illness or my own mind beat me. It does not matter if I am running a twenty minute mile or a thirteen minute mile, me and my body are beating the odds. It may last another week. It may last the rest of my life. But regardless of the outcome of my running life, or even this race Saturday, I have conquered.

Running My First Race

January 3, 2014 / / 26 Comments

The start of 2014 was very exciting for me.

Back in early October, when I returned from our honeymoon in Disney, I decided that I wanted to try running so that someday, I could run one of the Disney race events they have every year. I had been taking a good dose of prednisone (20mg) and figured if I ever was going to try running again, this would be the time. I had attempted running a few years ago for a month or two and had to stop because of my joints. In addition to the desire to run through Disney, I was also inspired by two online friends I had met, Lucy and Heidi, who both also have Sjögren’s and have either participated in races, or were planning on doing so.

As I have blogged before, I took the running thing seriously, especially because of my joint, fatigue, and respiratory issues. I read a lot of books, magazines, and online articles about strengthening exercises and I made sure I did regular yoga and Pilates classes, which greatly helped my running and overall health. Sometime in October, I started the Jeff Galloway Easy 5K training program. I highly recommend it if you are a new runner. It is a run/walk program that gradually builds up your stamina and endurance. I found the run/walk concept (I do a 1min./1 min. ratio) to be much less daunting than trying to run an entire distance. I also started regularly using a foam roller for my muscles, which has helped me physically in so many ways besides in terms of my running.

My goal was to run a 5K on January 1st; a race called Gordy’s First Race in Westfield, Massachusetts. I figured it was a good way to start the New Year and yet, gave me enough time to complete the entire Jeff Galloway program. The bottom line is, I don’t know how hard running is for everyone else, but it is very difficult for me and I wanted to make sure I was well-prepared. I also knew that by January, my prednisone dose would be significantly less and that fact worried me a little bit.

Getting race ready!

New Year’s Day was the day of the race. I was doing OK from a physical standpoint, but sleep was hard to come by the night before; not an unusual thing for me unfortunately. And the closer we got to Westfield, the more nervous I became. What on earth did I think I was doing?? A 5K race is not meant for an overweight 40-something year old with severe autoimmune issues. Or so I thought. My husband and I drove to Westfield, got our race bib numbers, and spent some time warming up by jogging/walking for a few minutes. My brother, Dennis, also was running the race with us. By this point, I was hyped up on adrenaline.

Pre-race: my husband, me, and my brother.

I have to say, there is nothing like the atmosphere of a race. I would guess that there were about 200 runners present; some were doing a 5K and some a 10K. I thought it would be better to start at the back of the pack because I am so slow and because I do a combination of running and walking. I told my husband and brother that I wanted them to not worry about running with me and see how well they could do, since they are both in much better physical shape than I am in. It was pretty cool that I then heard someone shouting my name. I looked over at the spectators and there was my mom who had showed up to cheer me on!

Off we went and within about a minute or two, the ENTIRE pack was way ahead of me, except for two women behind me. I suspected that this might happen because I had checked last year’s results and most of these runners appeared to be very fast! I tried to stay focused on my breathing and my stride, but all of a sudden I was faced with one of several hills that occurred the first half of the race. Although I had looked at a course map beforehand, I was surprised by the incline.

This is where I panicked a bit and totally lost focus.
I actually considered turning around I was so panicked.

The problem with panic is that is increases your heart rate and breathing, which for someone like me, who already struggles with that, it makes things a lot worse. It did not help that the temperature was about eighteen degrees and I was running into the wind. That’s what happens when you sign up for a January race in New England!!

As I tackled the hills,I found myself needing to do much shorter intervals of running/walking then in my training runs. I had done a little bit of hill running in my three months of training, but apparently not enough. Then I saw some people standing outside their homes on the race route. And I saw the traffic cops. They were cheering me on. Here I was running by myself (I kind of regretted that!), with nobody around me because I was so behind everyone else, and they were all cheering me on. It helped, a lot. I tried to settle myself down and decided that no matter what happened, I was finishing this race. I worked so hard for this. This was MY race; not anyone else’s. I was only in competition with myself.

Lone ranger!

Because the race was up and back, people started to run towards me on their way back to the finish line. I was not even halfway yet, not even close. I saw my brother run past me and then my husband. He had my asthma inhaler on him and I thought it might help if I took another hit. That was a HUGE mistake. What was I thinking?? All it did was jack up my heart rate some more and didn’t help my breathing. Live and learn.

My husband then decided, against my protests, to do the rest of the race at my side. He wasn’t taking no for an answer. I felt bad because he could have finished well, but to be honest, he was a huge help. As we hit the halfway mark and turned around, other runners would race past us. It was probably obvious that I was struggling, but several of them yelled out words of encouragement to me as the sped past us.

“Keep going!”
“You’re doing great!”
“You can do it!”

It was simply amazing. Let me tell you, if you are a good runner, are experienced at races, and see someone like me struggling, yell something out to them. NEVER underestimate the power of a few words. You never know the challenges someone else is facing when they are attempting to do something like this. So to all those strangers who rooted for me, thank you. I am forever grateful.

Not too long after we started back towards the finish line, I realized that I forgot to check my watch  to see what my pace was. This was the whole point of wearing one; that’s how out-of-sorts I was compared to my training runs! I looked down and realized that I was running a 14-15 minute mile, which was even better than I expected, especially with those hills. I was doing fine if I stopped comparing myself to everyone else. I also came to realize that the two women who were behind me when we started never turned around, which meant that they were doing the 10K and I would probably come in last for the 5K. I put that out of my head and just concentrated on one foot in front of the other.

I knew the finish line was coming and it was important to me to finish strong, but my lungs were on fire. And I mean fire!! My legs held up pretty good, but those lungs…geez. The traffic cops kept cheering us on. The elite runners kept shouting words of encouragement. My husband kept reminding me what I was supposed to do, like breathe. We rounded the corner that led into the front of the school where the finish line was. I knew that I was overdoing it and probably wasn’t getting enough oxygen at this point, but I saw the finish clock all lit up and the banner. I saw my mother and brother at the finish line and honestly, I would drop to the ground at this point before I would stop running.

My goal was to do the race in under 50 minutes. My official time was 45:13. By far, my best time ever, by several minutes.

Finish line!

I will admit, I wasn’t feeling too hot, but I walked around, drank a ton of water. I don’t have any other races to compare this to, but I thought Gordy’s Race was very well run. There was plenty of pizza, hot chocolate, and water afterwards, although since I was starting a new eating plan to help with my autoimmune issues, it was just water for me. We waited around for the race people to post the final results to see if I indeed came in last like I suspected.

I did not come in last. I came in second to last.

Guess who came in last?
My husband.

I was so focused on trying to finish without passing out that I didn’t realize when we crossed the finish line, he had put me in front of himself; just so I wouldn’t be last. Honestly, it wouldn’t have mattered to me at that point. I was so proud to just finish. But the gesture was so unbelievably touching that when I was posting a Facebook update from the car on the way home, I started bawling like a baby. He’s my biggest fan. My biggest champion.

I woke up the next morning feeling different about myself, mentally. The physical effects were still lingering a little, mostly the asthma stuff because really, asthmatics probably should not be running in cold temps like that. But mentally, that was a different story. I felt like I had accomplished something huge. Something that some people told me I would never be able to do. And I did it. Who knows what else I might be able to accomplish physically over the next six months or so. Maybe a longer race. Maybe a faster race. Maybe I can get off prednisone. Maybe I can go back to work.

Running this race, with all those other athletes, made me feel like more than my illness. Instead of cursing my body for what it can’t do, I could feel proud of it for what it can do.

Completely life-altering.

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.

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.

To Scoot Or Not To Scoot, That Is The Question

September 4, 2013 / / 7 Comments

I have had a difficult decision to make ever since my husband and I booked our honeymoon to Disney; which is in less than three weeks. To the average person it may not seem like a big deal but to me, it has been this gut wrenching decision that has taken me months to make and come to terms with. The decision I was struggling over was whether or not to rent a scooter to use during the eight days we are down in Florida at Disneyworld.

Most people I have talked to regarding this decision do not understand why I would even consider NOT renting a scooter considering the physical issues I have with arthritis, fatigue, and the difficulty I have with extreme heat and sun. To them, it seems like a no-brainer. And in some aspects it is a no-brainer. If you Google “scooters” and “Disney”, you will see that the use of scooters in Disney is rampant. A whole other topic for another day. It’s not like I would be doing anything unusual. Rent the scooter and just use it. Disney is huge. Why stress out over it?

I have never used an assistive device during all these years that I have battled extreme pain and fatigue. Not once. I have been on vacations and day trips. I have struggled at times to even get through a short shopping list at Stop and Shop where by the way, they do have scooters. I am not against scooters, wheelchairs, canes, walkers, or any other assistive devices. I know people who need them and use them. But I do not use them.

It is not because I do not physically qualify to use something like this at times because anyone who knows me knows that I certainly have had periods of time over the past five plus years where an assistive device would have been most helpful; especially a scooter. At first I thought it was just a pride thing or that I was worried what people would think when they looked at me using a scooter. I have this invisible illness which means that I typically look well on the outside and feel horrible on the inside. But then I realized that it is so much more than that. My desire and determination to intermittently not use an assistive device is due to one emotion and one reason: fear. I am scared to death.

I am scared to death that this autoimmune illness I have will progress. That someday I will be dependent on an assistive device to be able to go out into the world or even to function in my own home. I am scared to death because I have had so many different body systems affected by this illness that someday, it will get the better of me. I fear that I will end up in kidney failure or with neurological impairment that will prevent me from walking. I fear that I will be one of the Sjogren’s patients who develops Non-Hodgkin’s lymphoma. Or pulmonary hypertension. Or end-stage liver disease. These are not unrealistic fears. Although not as common as some of the other Sjogren’s symptoms, they do happen. People do die. So to me, needing to use a scooter at Disney feels like I am giving in to my illness.

To be honest, this position I have taken for myself about using assistive devices has served me well over the past several years. Has it caused me more pain? Sure. Has it sometimes limited what I can go out in the world and do? I don’t think so. But I do believe with my whole heart that pushing myself in terms of my mobility has made a positive impact on my lifestyle. I am a big believer in using what you have and also in the idea that you lose what you don’t use. I know there are people who have no choice in whether they use an assistive device or not. I have that choice. And I believe that if I had made a different choice, I wouldn’t be as active as I now am on some days.

This decision has been complicated by the fact that I got a sense from my husband that he was not on board with this whole scooter at Disney thing. And before anyone goes jumping down his throat about this, it has taken some heart to heart discussions between us to get to why I was getting weird vibes from him about it. (Disclaimer: I have his permission to publicly blog about this.) Of course I don’t need his permission in my decision about whether to use a scooter or not but I do value his opinion and it was important to me to hear his thoughts. I also felt like I needed his support on this. Come to find out, the weird vibes I was getting were accurate. My husband eventually told me that even though he wants me to do whatever I feel I need to do, that he felt like renting a scooter would be giving in to my illness. Same exact thoughts I was having.

But here’s the thing and this I know with absolute certainty: I’m a fighter. I have never given in to this illness. There are times where I have been accepting of the illness and the limitations it has imposed on me but I would not call that giving up or giving in. I also know that many, if not most people reading this, have no idea of what I go through on a daily basis just to function. Although my husband has a pretty good idea, he still cannot physically feel what I feel. He does not know every single instance I have pushed through when I should have been home in bed. Nobody does but me. And that is how I prefer it to be because I don’t want my life to be a series of verbal complaints coming out of my mouth about how lousy I feel.

I remembered a similar decision I was trying to make a few years ago regarding applying for a handicap parking placard. Similar thought process. A good friend told me that I should get the placard and if it made me feel better, only use it when I absolutely had to. She must have told me this on several occasions and finally I got one. And as I was making my scooter decision, I thought about all the times I got myself to the store, the doctor, or to a much needed social event just because I could use that handicap placard and park closer to my destination. I thought about how during those times, I had more energy to complete my errands or enjoy my time out with friends because of the placard.

Why would Disney be any different? Say for example it’s Day Two of our trip. It’s 5pm and we have spent a majority of the day at Animal Kingdom and we are now resting back at our hotel. And my husband and I want to go Downtown Disney to try one of the many restaurants there that we have been talking about for the past year and a half. But my joints hurt so bad and I am so exhausted that I cannot fathom getting out of the bed and leaving the hotel room. But wait, there’s my scooter. So my choices are, postpone Downtown Disney until a different day and hope that I am feeling better or not give in to my fears and take the scooter to dinner.

Have I mentioned that this is our HONEYMOON?!?

So I have rented a scooter for the week that we are at Disney. Why? Because I have decided that the possibility of enjoying our honeymoon more fully AND making the experience better not only for myself, but for my husband, is much more important than giving in. I’m not talking about the giving in to the illness, but rather the giving in to my fear. Because not renting/using a scooter and then not being able to do what I (we) want to do IS letting the illness win. It is taking a gamble on letting this thing called Sjögren’s dictate how we are going to enjoy this precious time together. That is not acceptable to me. Because like I said, I’m a fighter.

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If anyone out there has any experiences with using a scooter in Disney, please share your experiences in the comment section below. I am open to hearing about both good and bad experiences because your experiences could help me to have a better one. Thank you.

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