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Category: Sjogren’s Syndrome (Page 14 of 23)

Excerpt From Tales From The Dry Side

July 15, 2013 / / 4 Comments

Tramadol Ordering It is pretty common knowledge by now that I have written a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. It is a compilation of thirteen personal stories told by people with Sjögren’s syndrome. I am attempting to self publish the book through a company called Outskirts Press and I am doing a funding campaign through Kickstarter.com in order to get the book published.

https://dcinematools.com/gh24nzt Kickstarter works as a rewards system funding platform which means that financial contributors can elect to receive a reward from the author based on their donation level. Rewards start at $25 but the minimum donation is only $1.00. In order to donate you must sign up on Kickstarter and have an Amazon account because Amazon handles the money exchange at the end of the project which in this case is August 3rd at 5:30pm. If you do not have an Amazon account, it is very easy to sign up for one. I have been told by contributors that the entire process takes anywhere from 2-10 minutes depending on whether or not you have an Amazon account. Your credit card (via Amazon) does not get charged unless I raise the entire $7000 by August 3rd. if I do not raise the entire amount, you get charged nothing. You can read more about the book and the Kickstarter campaign on my Kickstarter page by clicking HERE.

https://penielenv.com/150n2xn31t To date, 43% of the funds needed have been raised. There are twenty more days to raise the money.

https://www.yolascafe.com/3q61whpf A lot of people have put a lot of hard work into these stories and into trying to get this book published. If you think you might be interested in donating but are not quite sure, the following is an excerpt from chapter 13 of the book entitled “Christine”:

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“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller

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I clearly remember the day it all started. It was the week between Christmas and New Year’s 2008. I tried to get out of bed and all I felt was terrible pain in my ankles and wrists. It was like someone was chiseling through my joints. I had never experienced anything like this pain before and it didn’t make sense because the previous day, I had been fine. I got out of my bed and found it difficult to even move my legs. This was only the beginning of my journey. The journey that changed my life forever.

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I tell my doctors that this is when my Sjӧgren’s symptoms started but looking back, I am not so sure that is accurate. I had been plagued for almost a year before this with left hip pain that was finally diagnosed as sacroiliac (SI) joint dysfunction and was permanently relieved by a steroid injection into the SI joint. My ophthalmologist had noticed two years prior that my eyes were starting to become dry and had suggested using eye drops. I blew off this suggestion. What was a little eye dryness anyways? I didn’t even notice it. Oh, what I used to take for granted.

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I was thirty-six years old at the time the joint pain started, was married with no children. I owned a home, and worked as a pediatric nurse at a children’s hospital in Connecticut. Up until this point I had a complicated medical history as I was diagnosed and successfully treated for Hodgkin’s lymphoma at twenty-four years old, had undergone a cardiac ablation for a heart arrhythmia at thirty-one, and was also diagnosed with a blood clotting disorder called Factor V Leiden. I also had hypothyroidism. I truly believed that this sudden onset of joint pain was just another issue to be dealt with and resolved.

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I sought out medical help right away for the joint pain as I was finding it difficult to walk and use my hands. My primary care doctor at the time worked me up for every possible thing she could think of including celiac disease, Lyme disease, other autoimmune diseases, the list went on and on. Tests and labs came back negative. My pain got worse and on top of it, I started to become more and more tired. Not your typical I didn’t sleep enough tired but rather that body numbing fatigue that makes every activity and movement difficult. I was sent to see other specialists including an endocrinologist and a rheumatologist but nothing could be found. This went on for months and months. Doctor after doctor visit, I would leave in tears and feeling frustrated.

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I had a great amount of confidence in the doctor, a physiologist, who had diagnosed and treated my SI joint dysfunction and I sought his help. He decided to do a five day course of steroids (prednisone) and all of a sudden, I was a new person. At this point, as a nurse, I was convinced that I had an autoimmune disorder but I was assured over and over again by several rheumatologists, three of them in all, that I did not, despite my positive response to the steroids.
As time passed, my list of puzzling symptoms increased significantly. Respiratory difficulties landed me in the emergency room or admitted to the hospital. I experienced severe joint pain, numbness and tingling in my legs and hands, voice hoarseness, rashes, chills, severe fatigue, abdominal pain, and ulcers in my nose. Yet no one could tell me what was wrong with me because for the most part, my labs and tests were normal. I also had a relatively recent history of depression and anxiety, now thought to possibly be Sjӧgren’s related, and it was suggested that the root of my problems was psychiatric and not physical. It still saddens me to this day that no one thought it might be the other way around.

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Dry Mouth

July 8, 2013 / / 8 Comments

https://www.brigantesenglishwalks.com/t6okhtt I was recently asked by a representative of Nuvora, Inc. if I would be willing to write a blog entry about dry mouth and also review one of their products. Just for the record, I have not been financially compensated (unfortunately!) in any way. This is an unbiased review. What is interesting is that in three years of writing this blog, I have never written about my Sjögren’s related dry mouth. I am not sure exactly the reason for that except that maybe compared to the rest of my autoimmune symptoms, especially the ones that affect various organs, it doesn’t seem like as much of a big deal.

Tramadol Hexal 100Mg Online But dry mouth is a big deal. The fact of the matter is that my dry mouth was not one of my first symptoms and it took some time to develop but when it did, it came on with a vengeance. I am very lucky to have inherited my dad’s excellent teeth and to date, I think I may have developed only one cavity since I started with the Sjögren’s symptoms in early 2008. I do work very hard at keeping it this way and I have an oral care regime that if the average person knew about it, their jaw would drop. That being said, a lot of us with Sjögren’s have meticulous oral care and yet we still run into terrible complications at the dentist. Dry mouth is not just a comfort issue, it is a quality of life issue.

Tramadol Buying Online Legal Dry mouth is experienced by twenty-five percent of people in the United States on a regular basis. It occurs more frequently in women and the incidence of it increases with age. The medical term for dry mouth is xerostomia and xerostomia is caused by a lack of saliva production. The problem is that this saliva is extremely important as its function is important in helping us to eat and swallow. Saliva also controls bacteria which kills germs. The result of not enough saliva include tooth decay, gingivitis, and other oral infections.

follow link Dry mouth can be caused by many factors including medical conditions and as a side effect from certain medications. The medications that can cause dry mouth include antacids, decongestants, antihistamines, antidepressants and diuretics. The medical conditions that cause dry mouth include lupus and Sjögren’s, as well as many other autoimmune disorders. Also, people with diabetes, AIDS, and those undergoing radiation treatment for head and neck cancers can be affected as well.

Mastercard Tramadol Proper dental hygiene is critical for those of us with dry mouth. Brushing two to three times a day, regular flossing, the use of a water pic, and fluoride treatments are some good measures we can employ to battle dry mouth. It is also advisable to avoid coffee, tobacco, and mouthwash containing alcohol as all of these can increase mouth dryness. But for many people, these measure are not enough. We can suck on all the sugar-free hard candy and chew all the sugar-free chewing gum in the world to no avail.

https://paradiseperformingartscenter.com/pypih90hd3u Since I started battling dry mouth, I have been through many products on the market: all of the Biotene products, OraMoist, and XyliMelts. I do use Biotene toothpaste in the morning (I use a prescription fluoride toothpaste at night) as well as their mouthwash with some good results. OraMoist patches were a bad experiment for me and XyliMelts I currently use on many nights and they are helpful.

https://penielenv.com/7l5cqu0o The product I was asked to review is called Salese. According to Bolko Stolberg, Executive Vice President of Nuvora, Inc., Salese is “a fast acting and long-lasting solution for people with dry mouth whether you get occasional dry mouth or whether it is something you deal with on a regular basis. Our unique delivery system provides lasting moisture for an hour or longer while also helping to improve the overall health of your mouth, leaving you with fresh breath and a clean feel.” The Salese lozenge uses a proprietary Sustained Release technology which is supposed to last anywhere from thirty minutes to two hours. This technology is designed to achieve unprecedented prolonged activity and efficacy for ingredients delivered in the oral cavity.

https://guelph-real-estate.ca/huf3lqep OK, that’s great but a lot of products advertised towards people with dry mouth make claims that just don’t hold up when you actually use the product. I won’t name any names. The folks at Nuvora, Inc. sent me two boxes of samples. Each box contains twelve lozenges. I obviously didn’t pay for them but according to Walgreen and Amazon.com, the price is $6.99 for the box of twelve.

https://getdarker.com/editorial/articles/6k8p3ew6z0z I went to try one and then I realized I had a huge problem: they sent me a box of peppermint and a box of wintergreen. Anybody who knows me well knows that I have a HUGE aversion to anything with mint in it, except for those girl scout cookies. And I am not kidding. I don’t know where this aversion came from but I do not even use mint toothpaste and I have never chewed minty like gum, and that includes peppermint and wintergreen.

https://lpgventures.com/mxq1wr46ag However I decided to go for it and I tried the peppermint lozenge twice. I will admit, the taste wasn’t as bad as I thought and my guess is that if you like mint, you will love these. The texture of the lozenge is very sponge-like, almost like a gummy bear. Unlike XyliMelts, they do not adhere to the roof of your mouth or gum line and as a singer, that is a feature I miss with the Salese.

see I got through forty-five minutes using the lozenge the first time and an hour the second time. I had to give up because of my aversion with the mint thing but I have to tell you, I was impressed with how long the lozenge lasted. It also didn’t have a chalky taste like some other products for dry mouth. Considering what was left of the lozenge when I ended my trial use of it, I would not be surprised if it lasted a total of two to three hours, at least. Few things make me as happy as finding out that a product is as good as its manufacturer claims it is. Also, Salese is a gluten-free, dairy-free, and vegan product. You all know how thrilled I am to hear that!

Ordering Tramadol From Canada I did some poking around on Amazon and by reading reviews there, I saw that most other people were as satisfied with Salese as I was. I also found out that there is a lemon flavor which made me very happy. Since there is no Walgreens around us, I ordered it and paid the extra $4.50 in shipping to give this flavor a try. If any of you want what is left of my samples, e-mail me your name and address and I will ship it to you. You know, that whole paying it forward thing and all!

Tales From the Dry Side: New Book About Sjögren’s Syndrome

June 28, 2013 / / 0 Comments

http://www.mscnantes.org/e9tbhnjg As many of you know, I have been working on a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. The project started in December 2011 because as I was networking and meeting other Sjögren’s patients, it became strikingly clear to me that there was a need for our stories to be told. There were so many similarities in our stories, especially in regards to how long it took most of us to be diagnosed. Some of us still do not have a “formal” diagnosis.

https://www.mbtn.net/?p=vysutf4j I went through a process of seeking out Sjögren’s patients via in person support groups, a list serve system, through my blog, and via Facebook. Including myself, there are thirteen of us who have contributed to this book. The stories are amazing and compelling. I spent the better part of a year coming up with a structure for the book and editing the contributor’s stories. Keep in mind, every single one of these contributors has an extensive autoimmune illness, sometimes more than one illness, and yet they spent countless hours writing these stories for this book.

enter site Steven Taylor, CEO of The Sjögren’s Syndrome Foundation (SSF) has written the foreword to the book and has agreed to support the book by promoting it via the SSF on their website and at conferences. His agreement to do this will be instrumental in getting this book into the hands of the people who need it most; not just patients, but caregivers and medical professionals as well.

see url The book is complete and has been for some time. Since October 2012 I have been sending letters and contacting literary agents to represent the book. I have attended a writing conference and met in person with a literary agent. After contacting well over twenty-five agents, I have gotten nowhere. I know this is common in the traditional publishing world however as a Sjögren’s patient with my own limited physical resources, this has been difficult. Also, I feel strongly that this book MUST get into the hands of those who need it ASAP and the traditional publishing process is not conducive to that.

go to site I have made a decision to self publish the book. I have spent countless hours researching the process and different companies. I have poured over self published books to see what I want Tales From The Dry Side to look like. I have made a decision to self publish with Outskirts Press as they produce a quality product and have an excellent reputation in the publishing world. I will be honest, the process seems daunting to me but as you all know, I am highly motivated and this project will succeed.

source url Self publishing costs money upfront. How much money depends on the quality of product you want and on the services you require. I have a husband who works but I bring in a disability income and my medical expenses are a bit ridiculous. Therefore I am looking for funding to self publish the book.

https://dcinematools.com/652mg6pemqv I have decided to do this through a funding platform called Kickstarter.com. It is a for profit company that is designed to help people finance a variety of creative projects, including books. You can learn more about them by clicking the link above. I am in the process of setting up the project on their website and it is almost done. I also had to set up a business account through Amazon in order to obtain the funds and it will be a few more days until that process is complete. I have learned a lot in the past month!

https://www.mreavoice.org/n0zjko1bc Kickstarter is not just a site where I ask for money to fund the book. It is a lot of work on my part. There are reward incentives that I offer based on the donation level. Rewards vary from a free copy of the book to my services as a speaker at your event. It makes the process of fundraising interesting and rewarding…literally!

https://alldayelectrician.com/gnagg3om9ve I am looking to raise $7000. OK, listen up because this is important!

see url https://paradiseperformingartscenter.com/0w603ot04 I have to raise the entire $7000 in about 30 days or I get NOTHING…NADA…ZILCH!

go site If I raise $6,950, no book! This is part of Kickstarter’s policy and I have no control over it. They have found that projects are more successful with this condition. Personally, it scares the crap out of me! The Kickstarter page for the book should be up within a week and I will be posting the link everywhere so that people can read more about the book and the funding.

So this is what I am asking for, besides money. I am asking that you share this blog post with anyone and everyone. I am also asking that you be on the look out for the Kickstarter link when I post it and then share THAT with everyone you know. Getting the word out about this will be critical to the success of funding the project. It is especially important that those of you who have a Sjögren’s or autoimmune related blog and/or website share this information. If I raise the $7000, the book will be published…period.

Thank you all again for your continued support.

Much love!

Embracing Prednisone

June 24, 2013 / / 5 Comments

I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!

Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.

After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.

Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.

Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.

I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.

Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.

Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

Yoga and Me

June 21, 2013 / / 0 Comments

Sometime in early May I started taking yoga classes at my gym. I had been wanting to try the classes for quite a while, for almost a year, but never had the guts to get myself there. I had taken a few classes about ten years ago but became so frustrated with it that after three classes, I stopped going. I think my frustration was with the fact that I couldn’t do most of the poses that were demonstrated. I felt awkward and fat. There was nothing peaceful or relaxing about that for me.

I decided several weeks before my wedding that it would be a good time to try yoga again because from what I had learned, it could really help with stress management. And I was trying to stay as calm and collected before the wedding as possible. Especially because stress exacerbates autoimmune symptoms. I was still self conscious about trying it because in my delusional mind, yoga was for fit people, not someone who at one point was seventy pounds heavier, still overweight, and had the joints of an eighty year old. However the gym I go to has several different levels of yoga classes that are included in my membership fee. I figured that I had nothing to lose if I tried yoga again; except for maybe my pride.

The first class I tried was called Yoga Fusion and was a combination of yoga and Pilates. I thought this was a logical place to start because I had been doing Pilates classes whenever my body could tolerate it and I really enjoyed Pilates. I was wrong. Yoga and Pilates in the same class is very hard, especially when you do not have a good grasp of the concept of yoga to being with.

So I tried a different class called Gentle Yoga. This particular class is offered at my gym several times a week. Currently I attend classes with two different instructors and both of them are fantastic. They are patient, helpful and never once have they made me feel like I don’t belong there. I accept their correction in my poses without hesitation and every week, I learn something new.

Gentle yoga was the right choice for me because now, I am hooked on yoga. Typically, in one of the two classes I attend, I am the youngest person in the room. At first, part of me wished I could do a more advanced class and not feel like my body was at least thirty years older than it actually is. However this is one of the lessons and gifts that yoga has given me: it is helping me to fall in love with my body and to have more of an appreciation of what it CAN do. And realistically, my body cannot do more yoga than a gentle class. Even the gentle class is very tough for me at times because a lot of the postures require me to bear a lot of weight on my most troublesome joints, including my fingers, wrists, and shoulders.

But I keep going. This is still relatively new to me and I am hoping that as time passes, my joints and muscles will become more accustomed to what I am trying to do with them. Typically, even when I go to class in pain, I leave in much less pain. The problem is about 12-24 hours later when everything tightens up and my joints feel the effect of all that weight bearing. However I agree with the philosophy that consistent exercise is more beneficial than harmful to my joints, so I keep plugging away at it.

I also find yoga difficult at times because it is hard for me to coordinate the breathing aspect of yoga with learning and performing the postures. That being said, it is well worth the effort. I have noticed a definite improvement in my overall well being since starting yoga. I have also noticed that on the days when I go to class, I have more energy than I typically do. I cannot explain it or do it justice but yoga appears to give me a sense of serenity and calm that I very much need in my life. When I am sitting there breathing and holding a posture, I am not thinking about the things that my body cannot do. I am not thinking that I feel fat or that I don’t look like a stereotypical yoga groupie. Most of the time, I am just thinking about how the hell I am going to keep that posture up before I collapse or topple over. And yes, that has happened!

But seriously, yoga is a powerful form of exercise that is helping me to be more accepting of my body. I talk a good talk about how we should all be accepting of our bodies and I do firmly believe that. But I do not always practice what I preach when it comes time to look at myself in the mirror. Somehow, yoga has helped me to look in the mirror and now sometimes be able to look at the positive aspects facing back at me rather than looking at my body with contempt and disdain. I see the upper arm muscles that have toned up. I see muscle definition in my legs as they appear smaller than a few months ago. Most importantly, I feel more at peace with who I am as well as who I am becoming.

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