For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: fear (Page 1 of 2)

Returning To My Gift

August 16, 2020 / / 9 Comments

It has been almost two and a half years since I’ve written in this blog. It has been the same amount of time since I’ve really written anything, except for Facebook posts and greeting cards. These facts do make me sad.


For those of you who know me, and to inform those of you who don’t, writing had long been my passion. I started writing this blog regularly after becoming ill, losing my job, and going on disability. I had always enjoyed writing, but once I had hours upon hours of free time to fill up, I realized that writing was not only an outlet for me, but a way that I could help others through what I was experiencing and learning in my chronic illness journey.

This blog mostly started off because of my health journey but it became so much more than that, hence why I titled it Thoughts and Ramblings on Life, Love, and Health…a title that I am actually considering changing, but that would make complications for me since the blog title is on my book. The jury is still out on that!

I started this blog in 2010 and was very dedicated to it.The more I wrote about chronic illness and autoimmune disorders, mostly Sjogren’s, the more I heard from other patients about their experiences. It was at that time that I felt moved to get word out into the world about how much Sjogren’s was misunderstood and misdiagnosed. So I spoke with many of the patients I had come to know and their stories gave birth to my first and only book, Tales from the Dry Side: the Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome.

Several years after the book was published, I stopped writing, completely. People asked me why I wasn’t blogging anymore and I kept telling them I had lost interest. And when I told people this, I meant it. I had absolutely no desire to write or put my thoughts and feelings out into the world anymore.

Deep down, I knew there was more to it than that. For example, my last blog entry before today was a story about my dog, Molly, who was like a child to me and died at the age of 15 years old. Her death, and my post about her death, absolutely wrecked me. 

After her death, I had several painful surgeries, followed by long recoveries and we almost lost one of my stepchildren. Shortly after Molly died, we were in a position where we needed to take in another dog, who was not living in good circumstances, and desperately needed a home. That dog, Foxy, subsequently suffered many serious health issues during a majority of her time with us and ultimately died a short two and a half years after we took her in. 

A relative passed away, my health deteriorated, and I made a major decision to leave a church I had been a longstanding member of and I not only changed churches, but went to another church home that was in most ways, the opposite of where I came from. And, I did this alone, meaning without my husband. I guess in many ways, I felt the need to turn inward, to self protect, and to be in survival mode.

However, not too long ago, there was a week where on three separate occasions, the topic of finding and recognizing my spiritual gifts came up. I think the first time might have been during a sermon at church. We’re in a pandemic. I lose track of a lot of things! The second time was definitely during a church related class that focused on finding and using your spiritual gifts. That grabbed my attention like a lightning bolt. The pastor was talking about worksheets we were given that would help us find our spiritual gifts. Immediately, writing came into my head. While I do believe I have other spiritual gifts given to me by God, that was the one that overtook my brain. and it was in that moment that I realized how much I missed writing and how much I was wasting this God given talent…not because I’m some amazing talented writer who has perfect grammar and what have you, but because I write in a way that makes people think and more importantly, helps people.

The third thing that happened in that span of time was that my therapist asked me during a session why I don’t write anymore. I explained to her about not having the desire to write, etc. But then something in me stirred and I knew I should share with her how I had been feeling about the writing issue. So, I finally did.

Because let’s be honest, it wasn’t about not having the desire to write. My therapist and I had some good conversation about this and all the underlying junk that went with it, a lot of which I mentioned above. She encouraged me to not worry about blogging and just write for myself and eventually I did, in a journal. I found this process helpful in identifying much of what was holding me back: thinking I wasn’t a good enough writer, feeling “less than” compared to other writers, being sick of hearing about, and writing about, Sjogren’s, for so long feeling too vulnerable to put myself out there, and the fact that the person (and hence, writer) that I am now looks quite different compared to the writer I was over two years ago, especially from a spiritual perspective. I was afraid of judgment. There’s this big part of me that wants to write about my faith and Jesus, but I’m so afraid of getting it wrong.

So I spent a lot of time in prayer about all this and I did more journaling…just for myself. I had never written for myself; it was always for other people. What I came to realize is that the gift of writing that I have been given is not for me to ignore or take lightly. It is a gift to be used and shared. I don’t need to beat myself up over the time I didn’t use this gift; it was a season. But now, it’s time to move on to a new season and I hope you will come with me through it.

If you are a reader of my blog, thank you for being here. I do ask for your patience as I found out when I logged in to write this post, that my blogging platform (eBlogger) had completely changed almost everything about the platform. I cannot even find spell check right now. And, when they made the changes, all the formatting got messed up. I guess that means I’m just going to have to work a little harder at it.

Also, thank you to the people who gently kept encouraging me to come back, most especially, my very supportive mother and my ever patient husband. I love you both.

Chronic Illness and Fear

February 11, 2017 / / 6 Comments

Photo Courtesy of Myers Creative Photography

I had this huge revelation the other day and I am sharing it with you because I would bet money that some of you have experienced very similar feelings.

The back story is as follows:

For about a month, I haven’t been feeling right and in a way that feels different than “just Sjögren’s.” As I blogged about earlier this week, my main debilitating symptom has been fatigue. Now fatigue has been a Sjögren’s symptom for me since day one, but this has been even more over the top than usual.

I recently increased one of my thyroid medications (I have hypothyroidism from radiation treatments I received for cancer in 1996.) and was wondering if my levels were totally out of whack. I had them tested earlier this week but I have not received the results because this is the one specialist I have left that just cannot get their act together enough to get me results in a prompt manner; last time it took almost four week…ridiculous!

In addition to the fatigue and thyroid checking, I was working a little more than usual and I work in a school. Every single germ known to mankind was circulating through each of the three schools I work in and next thing I know, I was down for the count about two weeks ago and instead of getting better, I got much worse with a respiratory infection, fever, the list goes on and on. And I just couldn’t bounce back. I finished a round of antibiotics and now am on day four of a higher dose of prednisone for my lungs (I have autoimmune related respiratory issues). Yesterday was the first day I was able to leave the house on my own and actually participate in the world.

For a few years now I have been seeing a therapist to help me deal with having a severe chronic illness. My main reason for starting to see her was to help me find more balance between my illness life and the rest of my life, especially in my relationships. She has done that and so much more. However I had not seen her for about a month and I finally got back in to see her a few days ago. I was a bit of a mess. I was totally overwhelmed with not only my Sjögren’s symptoms and issues, but the current respiratory/flu/cold junk I had as well. I was especially worried about the fact that I could barely move my body from the bed to the bathroom. It took me hours that day just to drag myself to the car to get to her office.

I was freaking out about how sick I was, more so than I thought was appropriate at the time. I mean seriously, EVERYBODY in all of western Massachusetts has been sick, I was no exception. Granted yes, I have underlying issues that can make things like a cold or flu much worse for me, but still. I was getting really nervous that I couldn’t just bounce back.

So my very rational therapist pointed out to me that yes, there’s a lot of illness going around but also that it takes time to recover from these colds, flus, respiratory infections, etc. And that maybe, I have been feeling so poorly over the past month because like everyone else, I have been hit hard and need whatever time it takes to heal and recover.

Now this seems like common sense and it is,and that is when I had my revelation.

I was scared.

Because I was sick for a more prolonged period of time than usual, I was scared that it wasn’t just a typical “you will get over it” type of winter illness.

No, I was afraid that THIS would be my new normal.

Why would I be so panicked about such a seemingly irrational thought? Tons of people get sick in the winter.

Because in 2008, this IS what happened to me.

In 2008, I went from a fully functioning 30-something to a disabled, out-of-work 30-something in about a month. Because nobody knew what was wrong with me at the time, I truly thought I was dying. Life as I knew it completely changed in every single aspect: my job, my home, my finances, my marriage, my sense of identity, and especially how I perceived myself. I went from working as a full-time nurse to working as a full-time patient. Almost everything was taken away from me.

I realized that all this current business was all about FEAR.

I was basing my current thoughts about how I physically felt on my previous experiences, rather than on the reality of the current situation.

I don’t know about the rest of you, but fear has been a common theme interwoven with having a chronic illness like Sjögren’s, and the numerous other health issues that plague me as well. And I have to tell you, fear is a bitch. I have been working hard to get through those fears over the past year or two: fear of getting sicker, fear of losing my disability or health insurance, fear of becoming totally incapacitated, fear of traveling…what if something happens while we are away?? Fear of losing more friends…fear of never being able to support myself again…I could go on and on. But this realization that I was now afraid of a typical winter respiratory illness and the symptoms associated with it being my “new normal” threw me off a bit because until that moment in the therapist’s office, it never dawned on me that was why I was so upset.

Here’s the thing though and I wholeheartedly believe this. Once you realize your fears AND acknowledge them, you are halfway to defeating them. By recognizing them and facing them head on, we can slowly begin to master them. For me, in addition to therapy, meditation and yoga has been helpful. Meditation because it allows me to clear my head, as much as possible, of the constant stream of racing thoughts and worries I often have. Yoga because it helps me gain some control of my body, breathing, and thoughts. Yoga, shows me what my body is capable of and therefore lessens the fear of my own body.

I would be interested in hearing about what fears you may have associated with living with a chronic illness and how you deal with them, if at all.

 Feel free to comment below…

The Manifestation Workshop: On Being Human

February 29, 2016 / / 3 Comments
“If you knew who walked beside you at all times, on the path that you have chosen, you could never experience fear or doubt again.” ~ Wayne Dyer
Photo courtesy of Jennifer Pastiloff

Do you see that photograph above? I didn’t take it, which is obvious because I am the one in the purple shirt right in the middle, but it is one of my all-time favorite photos. It was taken during a retreat I went to in February. To me, this photograph screams support and strength. 

It screams empowerment. 
It screams love.

I waited almost a year and a half to attend this retreat. It was a Jennifer Pastiloff Manifestation Workshop called On Being Human. I first heard about Jen through my dear friend, Tina. A while ago, Tina knew I was looking to submit some of my writing and she thought that Jen’s literary site, The Manifest-Station, would be a good fit for my writing. You can check out the site HERE. So I submitted an essay, it was published, and I started following Jen’s site.

Tina had gone to the On Being Human workshop last year and she couldn’t say enough about it. I guess the best way to describe the workshop is that it is a weekend filled with yoga, writing exercises, music, and self-exploration. It’s about empowerment and connection. When I was considering attending this year’s workshop, I was a little (OK, maybe more than a little) concerned about how I was going to manage the yoga part. However, Jen and Tina both assured me that the yoga is NOT the focus of the workshop. Rather, it is a vehicle Jen uses to help the attendees dig deeper into the self-exploration and writing parts of the workshop.

Even if you stop reading right now, please hear me when I say this: if you can get to one of her workshops, GO!! PLEASE DO NOT LET THE YOGA PART SCARE YOU OFF! I do have some gentle yoga experience, but I know several people in the workshop who had never done yoga, and they were just fine! You can check out Jen’s upcoming workshops HERE.

So, I took a huge leap of faith and decided to go for it.

Honestly, one of the best decisions of my entire life.

And one of the best weekends of my entire life.

No exaggeration.
Despite the fact that I have discussed in depth what transpired over my retreat weekend with a few people, it has been a struggle for me to get it all down in writing. Sometimes experiences are so big and significant in our lives, it becomes a challenge to do them justice with the written word. But, I will try to. Not for my benefit really, but for the rest of you who may benefit from my experience.

The retreat was help at Kripalu in Massachusetts. It was also my first time at Kripalu, but I think I am going to save writing about that for a different day. I’m also not going to describe in detail the exact writing and yoga exercises we did. I did not know going into it exactly what was involved and I’m so glad I didn’t know. I want the same for you. If you attend a Jen Pastiloff workshop, I would like you to go into it with an open heart and an open mind. I think you will be glad you did.

My experience at the On Being Human weekend retreat also included staying in a large dormitory with approximately twenty other women, almost all of whom were attending the same workshop. This was intentionally planned as a lot of the women knew each other from last year’s retreat. This was a VERY difficult decision for me to make. My former insecurities about my health and my body made me self-conscious. Sleep is crucial for me to function. Honestly, I was scared. However in the end, I wanted to share the experience with Tina and financially, it was really the only option as the semi-private and private rooms were MUCH more expensive.

Thank you God I made that decision. Being in the dormitory afforded me the opportunity to socialize and get to know my fellow workshop travelers. We slept in the same room, we ate our meals together and of course, we manifested together in our workshop sessions. All but one were total strangers to me when I got to Kripalu. None are strangers now. As adult women, how often do we get an opportunity like that?

I cannot lie: the workshop experience was intense. Good intense. We had a total of four sessions over the weekend, each lasting between an hour and a half to three hours. I think so anyways. It all went by so fast that I never checked the clock for time. When I was discussing the weekend with my therapist, I told her it was like being in session with her for two and a half straight days, only much more fun. That’s not an exact description, but the best I can come up with at the moment.

So what did I experience?

I delved into the very core of my spirit, or maybe soul is a better word. Now I have spent some time in therapy (I think everyone should) and I think of myself as a self-aware person. My writing gives that away every time. But this was different. This was about shredding the layers of insecurity, self-doubt, self-loathing, and fear that I carry around with me every day. And then doing so with complete strangers. It was about tapping into those parts of me that are good….and strong. I learned truths about myself, some of which I already knew, but many of which I did not. Truths that made me so sad; like the lies I tell myself about how I am not smart enough…or pretty enough…or thin enough…

Or just not good enough.
I learned that I do not need to ever apologize for whom I am or the illness I live with every single day. Through this workshop I came to realize that the beliefs and fears I carry with me are all lies. I was aware of some of this through the work I have been doing with a therapist, but the workshop helped me to finally put so many of those pieces together. I didn’t even fully realize how much I was berating myself with my own toxic thoughts every day, which is interesting because I have spent the past few years ridding my life of OTHER toxic people. But yet, the MOST toxicity resided in my own head.

I learned that it is not up to other people to recognize my achievements or strengths. Why not? Because I can do that for myself. It doesn’t matter whether someone else may think negative thoughts about me or doesn’t like me. I didn’t realize how much time in my head was spent worrying about that. Time and energy that I can use to do good things in the world and for myself.
So why would this workshop be different than say, therapy? I believe therapy is important. At times, it has saved my life…literally. But this kind of workshop is also about human connection; something that I believe as a society we get further and further away from. During the workshop sessions, you have to share…like in front of all the other people…out loud. When you share some of your deepest fears and insecurities with strangers, they are no longer strangers. They are friends. When you let yourself be THAT vulnerable to other human beings, magical things happen. Seriously magical things.

For me, the self exploration was incredibly helpful, but the sharing and listening to other people’s stories and thoughts was epic. People just don’t do that in the regular world anymore. And if they do, it is oftentimes stilted. I cried more during this weekend than I have in a long time. Not just for myself, but for others. It was bewildering for me to see and hear how much that we, as women, beat ourselves up, or don’t see our own self-worth. I thought I was the only one.

There is something about bearing witness to other’s people’s pain, struggles, and fears that elicits a response in me ( and in other participants) that I don’t typically have on a day to day basis. Empathy maybe? I’m not quite sure. What I do know is that it was such a privilege to bear witness to the struggles of other people. So if you are reading this and you were in the workshop, thank you so much for allowing me to be a part of your journey.


Human connection is probably the most powerful tool we have in our journey through this world. Deep human connection that is. Before last weekend I used to think that many of the thoughts and feelings I had were unique to me, and not in a good way. I thought I was “different.” So many times, I have been told that I am “overemotional” or “too sensitive.” While I can hold a casual conversation with the best of them, I always crave a deeper connection with people I meet or people already in my life. I am oftentimes disappointed and that led me to believe that I was defective or unusual. At my weekend retreat I realized that not only am I not defective, but I have a gift; that my desire to connect with people on a deeper level, while not for everyone, is not a detriment. I realized that maybe sometimes, it is just a matter of finding the right people to connect with. And letting myself “be seen.”

While I know this whole weekend retreat thing sounds like it was serious work, it wasn’t at all. I went into the weekend from a not-so-good place. I had previously been struggling physically, I had to resign from a new part-time job in January, and I was depressed in a way that I had not been in a very long time. But the retreat brought a lot of laughter and peace to my heart, as well as a dance party or two. And possibly, some wine. It was like my “joy” switch had been turned back on. Quite a relief for me actually. And even though we are all back home, trying to make our way on our day-to-day lives, we remain connected through our private Facebook group. Thank goodness, because I cannot imagine my world without these beautiful, strong, and courageous women.

I was driving home by myself from the retreat and within ten minutes of my drive home, I knew I was coming home a changed person. Well, maybe changed is not the right word. I was the same person, but a much better version…a more peaceful and confident version. A person who will no longer apologize for who I am and a person who is eliminating the work ” should” out of her vocabulary. I truly realized how different I felt when I drove into my driveway and realized that for the entire hour and fifteen minute ride home by myself, I never once turned on the radio. I had no need for the distraction. I was that comfortable being in my own head.

I have now been home for eight days and I have to say, I still have that feel good feeling from my retreat. It doesn’t mean that everything goes right all the time. Hell, this blog alone has taken me two days to do because I have been having so many problems with my blog server. But it does mean that I am walking gentler in this world and with more confidence. I don’t doubt myself and I put my opinion of myself ahead of all others. It does still take daily work on my part: yoga, meditation, staying connected with my Kripalu sisters, and reinforcing what I have learned, whether that be through reading, mantras and/or writing. It’s worth it though. It produces a much more peaceful version of myself.

A happier version.
A version that feels the joy existing in this world.

Thank you Jen Pastiloff and to your assistants, Angela and Melissa, as well. Thank you for finding YOUR path in this world and sharing with us your gifts – a path that brings the rest of us the tools and support we need to do the nitty-gritty work. You are changing this world in a way that not many can do – one person at a time.

Comfort Zone Escape

February 19, 2016 / / 2 Comments

“Each of us must confront our own fears, must come face to face with them. How we handle our fears will determine where we go for the rest of our lives. To experience adventure or to be limited by the fears of it.” ~ Judy Blume

Today is the day! I leave this afternoon for a weekend retreat at Kripalu with one of my dearest friends. It’s called the Manifestation Workshop: On Being Human (led by Jennifer Pastiloff). Doesn’t that just sound like the perfect retreat?

I have been looking forward to this experience for almost a year and a half now. I’ve NEVER done anything like this. Actually, the reason I didn’t go last year was because I was too afraid my body couldn’t physically handle it; not just the yoga classes, but all that comes with this type of thing.

Does that mean my health is better this year? No, not really. My doctor has me on a course of prednisone, which is helping, but not quite as much as I had hoped. At this point though, I’m going for it and I am going to do the best with where I am at this week.

I will be staying at Kripalu for two nights, in a dormitory, with a bunch of strangers, minus the dear friend of course. We will be attending workshops, doing a lot of yoga, a lot of writing (yay!), and eating together.

So. Outside. My. Comfort. Zone

There is a lot of uncertainty for me regarding this weekend. I may have to climb in and sleep on a top bunk. I don’t know yet what access I will have for certain medical things I need to take care of (i.e. using my humidifier), so I am trying to do extra treatments today before I leave to help cover me until I get back home Sunday afternoon. What I need to pack for myself personally is minimal, but so much to think about medically.

Health issues aside, I’m also going out of my comfort zone just by getting into the car and going off into a new environment. I don’t know about anybody else, but it brings up so many insecurities for me; insecurities that I wish I didn’t still have to face at forty-four years old…

I’ll be fatter than everyone else.
I’ll be an utter failure during the yoga classes.
I’m not strong enough,
Or flexible enough,
Or witty enough,
Or funny enough.

See my problem?

The good news is, those WERE my fears. I’ve been working through them and so today, I’m in a much better place about it all. I’m so excited, I cannot even stand it! Excited for the workshop, to spend time with my girlfriend, to be at Kripalu, and last, but not least, to have someone else preparing and cooking all my healthy meals this weekend!

I’m looking forward to meeting new people and connecting with them and more importantly, myself. Life has been bumpy lately, no doubt about it. I spend a lot of time and energy taking care of my physical body, so it will be nice to have time set aside to take care of all the other stuff. And to be in an environment where everyone else is doing the same thing.

So, I’m going to finish packing and then open my heart and mind to this big daring adventure.

Happy weekend!!

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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