For Everything There is a Season

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Category: Sjogren’s Syndrome (Page 12 of 23)

The Impact of Tales From the Dry Side

November 8, 2013 / / 6 Comments

https://www.mreavoice.org/01s795bnj9 I got a very exciting e-mail this week from my publisher. It was notification that my galley proofs for Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome were ready for my review. This is a big step in the publishing process for me. Galley proofs are basically the actual book digitally presented for me to review; the cover, the interior, all of it.

https://lpgventures.com/gcpjrjrlw9h It’s a scary process editing these galley proofs because if there are any mistakes, the full responsibility is mine. I have to say, as a perfectionist, that is much more responsibility than I want. On the other hand, one of the things I have enjoyed so much about the self-publishing process has been the opportunity to create a book that is completely and uniquely mine. With that, comes great responsibility. However, I can only do my best and in my heart, I know I have given this process everything I have. The final product, with any imperfections, will be enough. Just as I have been enough.

https://onlineconferenceformusictherapy.com/2025/02/22/vi8djkkqli My goal during this entire publishing process has been to have this book, my very first book, available to customers in time for Christmas. Of course I only have so much control over that, but yesterday was my opportunity to speed up that process. So in between having some work done on my car, doing a hospice volunteer visit, taking care of a sick dog, and choir rehearsal, I worked fervently on reviewing the galley proofs. And this means rereading and editing the entire manuscript…for like the zillionth time. That may be an exaggeration, but I have read this thing more times than I can count. And last night, at 8:30pm when I was exhausted, cranky, and ready to throw my computer out the window because I would rather be concentrating on watching Grey’s Anatomy, I realized just how sick and tired I was of this whole book writing/publishing thing.

source url That was, until I got to Laura Jeanne’s chapter….again.

https://penielenv.com/an9s2qxhy It is still surprising to me that every single time I have to review this manuscript, some part of one of my contributor’s stories moves me to tears.

watch Last night was no exception.

source link Laura Jeanne’s story is an amazing testament to the strength of the human spirit. This woman, like many of us, has gone through such hell in her Sjögren’s journey. Yet, her faith in God remains steadfast and certain. She still wakes up every morning putting one foot in front of the other. She counts her blessings and while several times has become close to just giving up on life entirely, she finds some hope and continues on her journey.

https://www.elevators.com/4lcz3a3c45 Rereading Laura Jeanne’s story last night reminded me of why, for two plus years, I have continued with pursuing this dream of mine to publish a book of personal Sjögren’s stories: to inspire, bring hope, and remind people to put one foot in front of the other. To remind them that it is possible to survive, and sometimes even to thrive.

Tramadol Cheap Online Thank you Laura Jeanne, and thank you too all of my amazing story contributors. We are just one more step away from actual publication and one more step away from bringing these stories out into the world. There is no doubt in my mind that these stories will help countless Sjögren’s patients. These stories will make a difference. They will educate and bring awareness to the medical community. They will bring hope and comfort to the four million people diagnosed with Sjögren’s syndrome.

https://danivoiceovers.com/pedyqq1z The Tales From the Dry Side stories will….

click here Encourage.
Inspire.
Change the world in a small way.

https://purestpotential.com/g7wdgeku5q4 Thank you.

Yoga and My Body

October 30, 2013 / / 2 Comments

https://mocicc.org/agricultura/z06bnjfr 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.

https://paradiseperformingartscenter.com/r896oxfjcj 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.

follow site 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.

Tramadol Sales Online 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.

https://danivoiceovers.com/daq199k9rs 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.

https://www.marineetstamp.com/8v94a43 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.

https://www.mreavoice.org/mhpfqnxus 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.

https://penielenv.com/8jeaq128 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.

go to link 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.

Tramadol Online Cheapest 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

Tramadol Overnight Shipping Visa 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.

https://guelph-real-estate.ca/c8k5cfaeg 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.

https://paradiseperformingartscenter.com/o12bfdib 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.

Order Tramadol Overnight Shipping 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:

https://www.brigantesenglishwalks.com/vme81vdg I am going to run again. Or at least, I am going to try very hard to run again.

watch 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.

https://www.elevators.com/sgtu8jwvv 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.

see 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.

enter 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.

https://purestpotential.com/dqw4hrd 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:

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

https://geolatinas.org/yaj7ry4vg 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.

go to link 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.

Kickstarter Contributors: Tales From the Dry Side

October 12, 2013 / / 3 Comments

As many of you may remember, I did a Kickstarter funding campaign this past summer in order to raise money to self-publish my first book, Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome. The campaign was an astounding success and I exceeded my fundraising goal of $7000 by raising $7305.

The campaign was based on a rewards program, which provided an incentive based on the dollar amount donated. One of the incentives was that the contributor’s name would appear in a special blog entry on Thoughts and Ramblings. This is it!

I feel like I don’t have adequate words to describe the gratitude I feel towards my Kickstarter contributors. All of them believed enough in this project, and in me, to donate their hard earned money towards my dream of publishing a book that talks about what it is like to live with this challenging illness. Sometimes I lie awake at night, right before I drift off to sleep, thinking about how many people this book will help.

Tales From the Dry Side is currently in the process of being published. The interior has been designed, I have approved the final copy of the front and back covers (it looks incredible!), and the final draft of the manuscript has been edited and reviewed. I am anticipating that the final product will be available before Christmas and hopefully, even by Thanksgiving.

So without further ado, and with humble thanks, the following people donated $100 or more to the Kickstarter campaign:

Lucy Bender
William Bowers and Alisande Watterson
Nancy Crabbe
Michael and Lauren Donati
Trish Duffy and Ed Jazab
Tina Forrister
Annika Johansson
Paul and Beth Kheboian
Martha LaCroix
Joe Leonczyk
Carla Meredith
Dennis and Jeanne Molloy
Dennis Molloy, Jr.
Paul and Jean Rouillard
Dr. John Savoia, D.D.S.
Heidi Syndergaard
Jeffry and Jackie Traw
Gladys Vargas
Drew Wendelken
Steven and Karen Wilmes
Suzanne Boisvert-Wood
Carol Wood
Jessica L. Zaydak

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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