Sjogren's Syndrome is Common?

I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.

That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea. 

Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head. 

On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.

Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.

From One Sheryl to Another

I got an email yesterday from someone asking for my help to raise money to pay for medical expenses for his partner. I don't normally post things like this here, but I had to post this. Her name is Cheryl (okay, so she spells her name wrong), she has Sjogren's Syndrome, Fibromyalgia, thyroid issues and a sister named Maria (my sister is Marcy-close enough). Here is his letter, along with the link to the youcaring.com page where you can read more about Cheryl and her ordeals, and donate as well, even if your name isn't S(C)heryl. Youcaring is a site where individuals and causes can set up a fund-raising page to raise money fee free.

Hi,

Sorry to write at this address. I ran across your blog and was wanted to know if you could help me. My partner Cheryl has been diagnosed with sjogren's syndrome, IgA deficiency, fibromyalgia, and secondary adrenal insufficiency. She also has had to have her thyroid ablated. The history of how we came to these diagnoses is long and complicated. The short story is that she hasn't had much success with traditional doctors, but about a year ago she started seeing a alternative medical care doctor who specializes in classical Chinese medicine.  His treatment as well as some dietary changes (eliminating wheat gluten for one) have helped her tremendously. Prior to this treatment she was bed-ridden because of the pain all over her body and was loosing weight.

The reason I am writing is that these treatments are not covered by insurance forcing us to pay out of pocket. Because we cannot afford these treatments I have started a fund-raiser to help pay for the treatment. We have already reached out to friends and family and have used Facebook to raise funds, but I have found that I need to reach out further. My request of you, if you can, is to post a link to our fundraiser on your blog to try to help spread the word. I don't have a Facebook page myself and am not good at social networking. Here is the link to our fund-raiser and gives a more complete story:

http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

By the way we live in Portland Oregon with two children (twins!)

Thanks for taking the time to look at this.

Barry

Vapur Water Bottles

In a my last post, I gave some air travel tips, one of them was to carry an empty water bottle, and fill it up from a water fountain once you get through security. Now I am going to tell you about the nifty water bottle that I use. It is from a company called Vapur, located in California, so you know they promote green living.
What I like best about this bottle is that it collapses when it is empty, so it doesn't take up valuable real estate in my carry-on bag or purse. When you fill it up, it can stand up like a regular bottle. You can wash it in your dishwasher, and even freeze it if you like your water realllllllly cold. Just think of all the bottles that don't go into the landfill because of reusable bottles like this.
The Vapur company makes a variety of bottles, in different colors and designs, including a limited edition Island series, and artist designs. (They haven't asked me for any of my artwork yet.) They range in size from .4 liters to 1 liter. The bottles come with a carabiner attached, so they can easily be attached to your belt-loop, bag or purse. Its a great way to keep water close at hand, especially for Sjogies (people with Sjogren's Syndrome) like me. (Sjogren's Syndrome is an autoimmune Syndrome that destroys the moisture producing glands in the body, including saliva and tears.)
If that isn't enough for you to head over to the Vapur website to put in your order, how about this: Vapur gives 1% of their sales to environmental and water-related causes. One of the projects they have is called "The Anti-Bottle Project", which they created in partnership with Randomkid. It is a fundraising tool for youth to sell Vapur bottles, the proceeds can go to building water wells in places that need clean water, or any green or environmental cause the youth choose.
So, what are you waiting for? Go buy a Vapur water bottle (or two or three), support the earth, and "live flexible", as they say on the Vapur website.

Happy World Sjogren's Day

Today is the 3rd annual World Sjogren's Day, the birthday of Dr. Henrik Sjogren, for whom Sjogren's Syndrome is named. Dr Sjogren, a Swedish doctor, first described the conglomeration of symptoms in 1933. The Sjogren's Syndrome Foundation (SSF) currently has a goal to cut in half the average time it takes for a person with Sjogren's to get a correct diagnosis. Currently it takes about 7 years from the time symptoms appear until a diagnosis is made. That is a long time to feel sick and not know why. Here are some facts about Sjogren's Syndrome. If you recognize these symptoms in yourself or someone you know, bring it up with your (or their) doctor.
Sjogren's Syndrome is an autoimmune syndrome, which affects the moisture producing glands in the body. Classic symptoms are dry eyes and dry mouth, but that is only the tip of the (dry) iceberg. Almost any system in the body can be affected, including dry skin, dry vagina, digestive issues and brain fog. Joint or muscle pain are often present. Symptoms may mimic menopause, drug side effects, or other diseases including Lupus, Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue Syndrome and Multiple Sclerosis. Not everyone has noticeable dry eyes or mouth, and symptoms vary in each individual, making diagnosis difficult.
Nine out of ten people with Sjogren's are women. Most often diagnosed in the late 40's, many of us recall symptoms going back to our teens or earlier. Sjogren's is believed to be the second most common autoimmune disorder, affecting as many as 4 million Americans.
One reason Sjogren's Syndrome is less well known than many diseases that affect far fewer people is that people don't die of Sjogren's. There is no cure for Sjogren's, but there are medications that make living with it easier. There are medications that help increase tear and saliva production, control yeast infections of the vagina or mouth, and decrease pain. Some people with Sjogren's take steroids or immunosuppressant drugs to decrease the systemic symptoms.
Spread the word. The sooner people get a diagnosis, the sooner they can get treatment.
  

Sing to the Heart

Yesterday was a rough day for me. Work was a bear (too much work, not enough staff, same old story...). My plantar fasciitis continues to bother me, despite 2 injections into my heel on Monday. My knee and hip, apparently jealous of my foot, continue to clamor for attention. For about a month now, until around 10:30 am every morning, my skin has sort of an irritable hypersensitive feeling, like a fresh scrape: a gift of my Fibromyalgia, I believe. On top of that, my stomach was in turmoil from a Cipro I was given to ward off infection after some medical testing. (Thank you for allowing me to complain. I'm done now.) I have been easily discouraged lately, with all this going on at once. Last night, I was given a gift that lifted my spirits, and sang directly to my heart. I am involved with a Jewish women's group that meets each month to celebrate Rosh Hodesh, the beginning of the Hebrew month. Last night was our final session of the year. As a special treat, we had a Jewish women's a cappella group from Pittsburgh, PA, Kol Shira. When I am down, one thing I know I can count on to bring me up is music, especially music I can sing along with, my first choice being Jewish music. This group was perfect, with both English and Hebrew, and the majority of songs familiar to me, along with some new ones to delight me. I sat on the floor, at times singing along, other times, I closed my eyes and allowed the music to wash over me, to flow around me and through me. One of the singers told us that she is a music therapist. I was in need of healing, and this music was my healer, my therapy.  I bought their CD, Speak to the Heart, because their music spoke to mine. Two songs they sang last night especially spoke to me, and both are on their CD. (Note: the links are for other groups singing these songs.) The first is called Hine Ba Hashalom, which means Here Comes the Peace. It was a popular Israeli pop song a few years back, is upbeat, with catchy lyrics and is fun to sing. The other song that hooked me was a song called Dig Down Deep. Here are part of the lyrics: 'I'm digging way down down to the bottom of my soul; I'm digging way down way down deep. I'm digging way down down to the bottom of my soul; There's clear water running through me....' My Sjogren's Syndrome body forgot about that water running through me. It sure was refreshing to find it again. Every time I have an experience like tonight, it hits me again just how powerful music can be. Music has been used for millennia for worship, communication and healing. Whether it is fast or slow, loud or soft, smooth or choppy, reverent or irreverent, vocal, instrumental, all or none of the above, there are few people who have never been touched by music. People with chronic pain and illness know all too well what discourages us. What re-courages you? What gets to the bottom of your soul and brings you peace? 

Walk For What Ails You

Our local Akron Area (Ohio) Sjogren's Syndrome Support Group had a 'walkabout' on Sunday, June 3, 2012. One purpose of the walkabout was to raise funds for the Sjogren's Syndrome Foundation (SSF), which is then used to fund awareness campaigns to educate the public and medical communities about Sjogren's Syndrome, and to fund research to find better treatments. Another purpose of the walkabout was that all of those participating talked to family and friends about Sjogren's, and that in itself increased awareness. Besides that, it is a fun event, a chance for us to get together in the fresh air and take a walk.
Sjogren's Syndrome is defined by the SSF as "a chronic autoimmune inflammatory disease in which moisture-producing glands are damaged, significantly decreasing the quantity and quality of saliva and tears." It may cause dysfunction in other organs and systems, and often includes extreme fatigue and joint pain. Sjogren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans.
Since pain and fatigue are frequent symptoms of Sjogren's, the walkabouts are short. There are options for participation for anyone, including working at the registration or snack tables, cheering others on, and doing as much of the route as they are able.
If you are a regular reader here, you know of my struggle lately with plantar fasciitis, achilles tendinitis, and hip pain. I walked the full route, twice around a short circuit, slowly but surely. My husband and youngest son, home briefly between college and grad school, walked with me. I raised over $300 myself, and the event raised over $6ooo total. While I was collecting money for Sjogren's, a couple of friends were collecting money for cancer walks they were participating in. It seems that more and more illnesses are getting involved in the 'walkathon' business. This is a fun way to help fund research and education for whatever ails you. Check out local support groups, look online, find out if there is some kind of event for your illness, and if not, start one. You don't have to be a big, national organization. Our local newspaper frequently has little blurbs about a person or family sponsoring a spaghetti dinner, or a walk, or some other event to raise funds for something. You can even just get a bunch of friends together to raise funds to send to whatever cause you choose. Keep in mind that if you do not have a known cause behind you, people may be reluctant to donate. Be clear about where the money will be going.
Happy walking!  

It's Not My Fault

This post is sort of a companion post to 'Permission Not To', which I wrote 3 weeks ago.  That post was about giving myself permission to take care of my own needs rather than take care of other tasks.  The title of this post, 'It's Not My Fault' sounds like I am trying to shirk my responsibility.  I'm not, because it really isn't my fault, and it isn't yours, either, so quit blaming yourself.  I am talking about our illnesses.
All too often I read blogs or emails, or hear comments such as "I was too tired to do anything after work yesterday, I went right to bed. I am worthless to my family."  Or "I wasted the whole day in bed yesterday because the pain was so bad. I didn't get any housecleaning done.  It is a wonder my husband puts up with me."  Statements like these are blaming the victim (aarrggghhhh!  I hate that word!)  Both these examples could be made by people with chronic illness or pain, and both blame themselves for the results of having that illness or pain. 
I know for a fact that I did not raise my hand and ask to be given Sjogren's Syndrome, Fibromyalgia, etc, and I am going to guess you did not ask for whatever you have, either.  It is unclear for many illnesses why some of us are so blessed, but it is often not anything we did.  Likewise, the symptoms are not something we asked for, or caused by anything we did.  Extending that to the next step, the results of those symptoms are not something we asked for or anything we did.  If you can't do something because or pain, fatigue, or other symptoms of your illness, you are not to blame.  It is true that maybe you could manage your time or energy differently, but frequently, it would not have made a difference. 
Take yesterday, for example.  I woke up tired.  I spent the whole day in a fog.  I had alot of things that I needed and wanted to get done, but accomplished very little.  I could beat myself up over that.  After all, that puts more of a burden on me to get things done today.  But I won't beat myself up, because I didn't ask to wake up in a fatigue fog.  I got enough sleep, it just happened.  It's part of the package of who I am.  Getting upset about days like that won't make them go away, it would just make them more miserable.  I would rather go with the flow, and just accept them, and remind myself that I did the best I could.

Gluten-Free Versus Gluten-Lite, Take 2

About three weeks ago, I wrote about my plan to try eating gluten free for a month and then eat gluten to see how it affected me.  I was tested for celiac and it was negative, but I have heard that even without celiac, a gluten free diet can be helpful for people with Sjogren’s Syndrome, Fibromyalgia and hypothyroid, three of the ‘challenges’ I live with.  So the results are in -sort of.  

One thing I noticed is that I have gone from using 2 prescription-strength Pepcids a day, and still having problems with acid and reflux, to using only one Pepcid a day, with few problems.   

On Friday, one of my husband’s patients (he is a psychologist) brought him some homemade chicken noodle soup.  I decided that, since I had gone 4 weeks without gluten, this was as good a time as any to put my system to the test.  How ironic that I was having chicken soup, usually thought of as a cure-all, to see if it would make me sick.  **A note to my husband’s patient- This is not a comment on your cooking.  The soup was delicious.  The test was how my body would react to the gluten in the noodles.  And react it did.

We ate the soup with English muffins for dinner. Within a half an hour, I developed a stomach ache.  It was gone in the morning, but came back when I ate half of a bagel for breakfast.  I had half of a sandwich on rye bread for lunch, the stomach ache continued.  ENOUGH!  My body shouted.

In my previous post, I speculated on whether I would need a strict gluten free diet, like a person with celiac disease needs, or, since I do not have celiac, would a ‘gluten lite’ diet suffice?  True confession:  the diet I followed this past week was not completely strict.  I did not eat anything with blatant gluten ingredients, but I did eat a few things that were labeled ‘packaged in a facility that also packages wheat’, so there may have been some contamination.  I also ate oatmeal for breakfast most days.  Oats, themselves don’t have gluten, but they are sometimes grown in fields that alternate with wheat, so may have some contamination.

My next experiment will be whether my body can handle small amounts of gluten.  Yesterday, we ate at Cracker Barrel, a favorite restaurant of mine.  I asked them about gluten free foods, they said that they don’t claim that any of their menu is gluten free.  I chose items that are less likely to have gluten:  grilled trout, corn, hash brown casserole and coleslaw.  I did not ask for my food to be cooked separately, as a strict gluten free person would require, and I even ate a half of a corn muffin, which was made with some wheat flour.  I did fine.

My plan is to eat mostly gluten free, any products which are primarily grain, such as bread and pasta, I will stick with gluten free. But I will allow myself to use products with a small amount of gluten, such as my favorite mustard. Someday, I may try a strict gluten free diet, to see if it helps me even more, but for now, I am going to stick with ‘gluten lite’. That is the best of both worlds (at least for me).

Gluten Free Versus Gluten Lite

My oldest son has a girlfriend who has celiac, as do several of her relatives. She has one aunt who likely has it, but she does not want to get tested. Perhaps she believes that as long as she doesn’t get tested, she doesn’t have it. More likely, she suspects she does have it, but as long as she doesn’t get it confirmed, she doesn’t have to follow the gluten free diet. If she does have celiac, this diet would help her feel physically better, but would make eating more complicated, especially when it comes to eating out or in social settings. I can sort of understand that thinking, but not really.


I have been tested for celiac, and I was negative. I have heard from various sources that people with Sjogren’s Syndrome do better on a gluten free diet, as do people with Fibromyalgia. I heard recently that people with hypothyroid also do better on gluten free diets. Since I have all three of these, I decided to try out being gluten free, and see how I do.

I have been ‘gluten lite’ for about two weeks, and planned to go gluten free this week. I changed my mind, and have continued the gluten lite diet for another week, and will go ‘all the way’ next week. This week there are too many complicating factors. The first one was a pot luck gathering with people from my temple on Christmas day. I know that there will be pot lucks in the future that I will have to navigate gluten wise, but since I am doing this as an experiment, rather than knowing for a fact that I will be helped by this diet, why make it harder for myself to adhere? The other complicating factor is my current situation: vacation for a week at our cabin, with our two sons (one is in college, the other in grad school.  Having all four of us together is a special event these days.)

At the pot luck, I had some soup with pasta in it, taking the pasta out, and I ate a piece of pecan pie, eating the filling but not the crust. Both of these I consider gluten lite, because I didn't actually eat the gluten-containing parts, but the food is contaminated if it comes in contact with gluten. Here at the cabin, I have been more stringent, but still not quite gluten free. I have my own bread, made gluten free pancakes when they had regular pancakes, and have been reading labels to avoid using products with gluten in them.  I did have a piece of cheesecake and ate the crust.

So the question is, since I don’t have celiac, the most common reason people eat a gluten free diet, how gluten free do I need to be? I know that for people with celiac, even a crumb of gluten-containing bread can throw their system off and make them symptomatic. Is that true for people who don’t have celiac as well? Or is ‘gluten lite’, as I have been eating this week, close enough? My plan is to go gluten free for two or three weeks, then eat something with a substantial amount of gluten in it, and see if it causes any problems for me. If it does, I will go back on the gluten free diet for a few weeks, and then try eating a small amount of gluten, and see how I do.

This has been a learning experience for me, and for my husband as well.  We were at a cafe the other day, and I was asking questions about the ingredients in something I was thinkin of ordering, and my husband got impatient.  If it turns out that being gluten free helps me, that is one of many changes he and I will have to get used to. I will let you know how my experimenting turns out.  I will also have more info about gluten and following a gluten free diet in a future post. 

Confessions of a Drug Store Junkie

I have a confession to make.  I went to a drug store today that I don’t normally go to, and realized I am a drug store junkie.  I had a list of six things I needed to get.  I only had 20 minutes.  Did I look for the items on my list?  No.  I made a beeline for the mouth care section to see if there were any new dry mouth products (there weren’t).  Next I went to the eye care section, to see if there were any new dry eye products (again, there weren’t).  On to the nose care section- nothing new there, either.  I noticed that as I made my way from section to section of the store that my adrenaline was up a little. I was enjoying the thrill of the hunt. 

 I am the same way with pain products.  Not the pills, I already take more of those than I like.  I look at the topical products, the creams and lotions.  I am particular about what I will try.  I don’t like smelly stuff (e.g. menthol), or burning stuff (e.g. capsaicin).  There are some pain products that I have looked at, but have not tried yet.  One is Arnica.  It is a homeopathic.  I am not convinced that homeopathy works, but I will probably try this product at some point.  When I do bring home a new pain product, I am never quite sure what to do with it. Do I put it on my arm, where I have been struggling with tennis elbow for over a year?  (This is usually my first target with a new pain unguent, though nothing I have tried seems to help it).  Do I put it on the hip bursitis that I have had for 20 some years?  Do I put it on my neck/back/shoulder that has been a problem off and on for 30 years?  Do I put it on all the areas where I don’t hurt, as long as nobody/nothing touches me?   I can’t very well take a bath in it- that might lead to an overdose- but it sure has been tempting at times.  

Whenever I go to a drug store, I check all these sections to see if there are any new products I can try.  I have lived with Sjogren’s Syndrome and Fibromyalgia for many years now.  I am used to the dryness, pain and fatigue, and everything is in moderate control, but I still have hope of finding just the right products that would give me even better control. When I do find a new dry (name a body part) product or pain product, I get excited, and can’t wait to get home to try it out. 

At various times, other sections of the drug store have been on my must see list: digestion products, feminine products, skin products, foot products, depending on which parts of me are complaining loudest.  Despite my apparent affliction as a drug store junkie, I did get my shopping done in time to get to my appointment.  I only bought two items that were not on my list.

Chewing Gum is Good For You

Chewing gum seems such a minor thing, but it has many advantages.  The obvious one is that it tastes good (some kinds for longer than others).  There are more and more flavors every time I go to buy some.  My favorite is Trident Blueberry Twist.  I chew it for a few minutes, then I tuck it into my cheek, and bring it back out to chew whenever I want, or whenever my mouth feels dry.   The flavor lasts for quite a long time this way, and seems to last the longest with this flavor.

When I buy gum, I look for kinds that have Xylitol as the first sweetener.  It is metabolized differently from  Sucrose (regular sugar).  It is safe for use by diabetics,  it keeps bacteria from adhering to your teeth, so it decreases tooth decay.  I stay away from sugared gums.  I recently tried Stride Mega Mystery flavor, even though Xylitol was the second sweetener listed, because I liked the multicolored package, and I was curious. (Marketing works).  It has an intense fruity flavor that is very good, but does not last as long as the Trident Blueberry.

Studies have shown that chewing gum can increase alertness, decrease stress and anxiety, and decrease levels of  Cortisol, a major stress hormone.  Gum can also increase concentration, and therefore performance, freshen breath, and can even help with weight lose /control.. A study at the University of Rhode Island  showed that chewing sugarless gum not only lead to decreased calorie intake, but also increased energy output.

 The act of chewing itself stimulates saliva, gum stimulates chewing, so chewing gum is good for people with dry mouth, like me and my fellow 'shogies' (people with Sjogren's Syndrome, an autoimmune syndrome that affects the moisture producing glands in the body).

About 18 years ago, I was at a baby shower for my sister, and I was chewing gum.  When watching the movie that we took of the party, I saw myself chomping away, and it looked 'unladylike'.  For many years after that, I was careful not to chew gum in public.  Now I have decided that it is OK to chew gum in public, because I don't chomp noisily or rudely, and I know it is good for me.

The Sweetness of Xylitol

People with Sjogren's Syndrome, and other illnesses that cause dry mouth, need to take extra care of their teeth and mouths.  Xylitol is a naturally occurring sweetener that tastes like sugar, looks and dissolves like sugar, but has 40% fewer calories.  The best part of all, is that xylitol is actually good for your teeth!  According to xylitolinfo.com, benefits of xylitol include:
Helps reduce the development of cavities (dental caries)
Resists fermentation by oral bacteria
Reduces plaque formation
Increases salivary flow to aid in the repair of damaged tooth enamel (remineralisation)
Compliments fluoride in oral hygiene products

Xylitol has been recommended by several dental associations worldwide through endorsement of sugar-free products in which xylitol constitutes at least 50% of the total sweetener.  Xylitol is metabolized independently of insulin and is slowly absorbed. The low-glycemic effect of xylitol metabolism makes xylitol an ideal sugar substitute for diabetics.  The only downside of xylitol is that in large quantities, it can have a laxative effect.  According to xylitolinfo.com, most adults should be able to tolerate 40gm/day. 
http://www.yourdentistryguide.com/xylitol/ states: To help prevent cavities, you need approximately six to eight grams of xylitol taken (chewed or ingested) throughout the day. To help prevent ear, nose and throat problems such as sinus conditions and middle ear infections, approximately 10 grams daily is recommended.  If used only occasionally or just once a day, xylitol may not be effective, regardless of the amount. Use xylitol at least three times each day – five times is preferable – for at least five minutes right after meals and snacks.

Dr. John's Candies has a variety of xylitol candies, including taffy, hard candies and lollipops.  They have developed a program they call SimplyXylitol,. These are specifically designed products (candy, gum, chocolates, lemonade, etc.) with measured amounts of xylitol.  Dr. John (a dentist, by the way), suggests 3-5 servings of these products spread throughout the day, preferably after meals, lasting 5 minutes each, to get the recommended 6-10 gm of xylitol. 

I buy xylitol in bulk, and use it instead of sugar for all my sweetening needs (I don't use much sweetener, I wouldn't recommend doing this if you do use alot).  Some xylitol containing products include:

Spry has a line of xylitol products, including gum, mints, toothpaste and oral rinse.  Xlear, the parent company, has other products, including a nasal rinse and bulk xylitol.  Trident Gums have varying amounts of xylitol, I like the Blueberry best.  This website has some cute (some might say annoying) little doodads, including a nonsensical multiple choice quiz to match you up with the gum that is perfect for you.  They matched me up with citrus blackberry Splash.  I will try it to see if I like it.  I found xylitol jam at globalsweet.com (I haven't tried it, if anyone has, let me know how it is).  The Biotene line of mouth care products, mouthwashes, toothpastes, moisturizers, gum,etc., all feature xylitol.

There are many more xyltol products out there, this is only a sampling.  I highly recommend using these products, especially if you have dry mouth issues.  As a great fan of candy (see my post a couple of days ago on Jelly Belly Jellybeans, which, unfortunately, don't contain xylitol), I think it is wonderful that finally, I am being told that candy (at least some candies) are good for me!  Now, to convince Jelly Belly to change their recipe...

SING AND GIVE (YOUR PAIN) AWAY

I hurt.  I think most people with Sjogren's Syndrome, all people with Fibromyalgia, and many people with and without chronic illness could relate to that.  I have one of those bodies that if you touch me anywhere, I hurt.  I get tendonitis very easily, then it takes months to go away.  I have often said that I would like to go to a body shop and get a new body.  My husband said he would like to come with me to help pick it out.

Currently, I have Plantar Fasciitis in my left foot, which I have had for about 10 months now.  I have tendonitis in my right elbow, which started 6 months ago, when we started pack and lugging boxes for our move, which was in January.  I have had pain in my right knee off and on for a month, which for the past 2 days has hurt whenever I move it or put weight on it.  Last night at Temple I started feeling sorry for myself.  I had a dilemma:  During the service, there are several times when we have to stand up or sit down.  I thought of using my hands to ease myself up or down to help my knee, but that would hurt my arm.  I finally figured out a way to use my left hand, and put most of my weight on my left foot.  Awkward, but doable.

The Social Action Committee of our temple talked about some of the projects they are involved in.  It got me thinking:   I may have pain, fatigue and other symptoms, but I also have a safe and comfortable home, enough food and other necessities, a job, and a family that loves me and helps me.  I went to a workshop on stress a few years ago, and the main thing I remember from it was the instructor telling us to say to our selves, "At least I'm not..." and find 3 things with which to fill in the blank. That really helps to put things in perspective. 

Helping other people helps you as well as them.  Donating money or other goods helps, but actually doing something helps more.  It doesn't have to be anything big. I like doing Random Acts of Kindness, such as complement a stranger on something they are wearing, or pull out a shopping cart and give it to the person who came into the store behind me.

I went to a new PCP (primary care physician) on Thursday.  He told me to always wear an insert in my shoe to support my foot, and to wear braces on my elbow and knee.  (My elbow and knee should have really nice smiles after this.) I already had these things from previous attempts to heal body parts. I pulled them out and put them on this morning.   They are blatant reminders that I have several body parts that are out of whack.  So once again, I was feeling sorry for myself.

We like to go to our Temple's Saturday morning Torah study class.  Before the class is a short service, which is always mostly singing.  I love to sing.  I don't have the best voice, but it isn't the worst voice either.  I don't care.  I sing because it feels good.  I have often heard people say, "You don't want me to sing, everyone would run out of here screaming",  (or variations on that theme).  Nonsense.  Unless you are in a performing choir, singing isn't about how it sounds It is about how it feels.  As my husband said, "When you get a room full of people singing off key, it sounds pretty good."  Children often sing, and no matter how it sounds, it makes us smile.  Worship in most religions throughout history has included singing.  I heard somewhere (though I can't remember where) that singing releases endorphins, the same 'feel good' chemical that our bodies release with exercise. When I am down, I like to put on a cd that is so familiar that I can sing every line.  It always turns me around.  This service did, too. 

The message of this post is to go out and sing while you commit Random Acts of Kindness.  Or you can do them separately, and spread out your 'feel good' activities. 

WHAT IS SJOGREN'S SYNDROME?

Sjogren's (pronounced SHOW-grins)Syndrome is an autoimmune syndrome in which your own body attacks the exocrine, or moisture producing glands. The classic symptoms are dry mouth and dry eyes, but it can affect any system in the body, including the kidneys, gastrointestinal tract, blood vessels, liver and central nervous system. Patients often experience joint and/or muscle pain and fatigue as well.

According to the Sjogren's Syndrome Foundation's website, www.sjogrens.org, as many as 4 million Americans are living with this disease, 9 out of 10 of them are women. Some people have mild symptoms, others are debilitated by this disease. Since the symptoms are so diverse, and appear different in each person, it often takes up to 7 years to get a diagnosis.

Sjogren's Syndrome is chronic, there is no cure, and as of this time, no medications that control it. Most treatment is symptomatic, though some people have found that immunosuppressive medications are helpful in controlling intenal organ manifestation. There are many over the counter products that help, such as a variety of eye lubricants, saliva substitutes, nasal moisturizers, etc. There are 2 prescription medications that help increase saliva: Evoxac (pronounced EE-vo-zak),and Salegen, and one prescription eyedrop which helps increase tears, Restasis.

I was diagnosed with Sjogren's about 5 years ago, by luck. I went to the doctor for something or other. He wasn't there, so I saw someone else in his practice. With my own doctor, I would just talk about the current issue, but with this new doc, I had to catch him up on all the things that had been going on. He put it all together, and said it sounded like Sjogren's. He sent me to a rheumatologist, who confirmed it. My first symptoms, chronic pain in my hip, arm and neck, had started years before, but I never thought of them as connected (Other than in the 'hip bone's connected to the neck bone' kind of way- that sounds very uncomfortable). Several years before my diagnosis I had to give up wearing my contact lenses, which I had worn since age 16, because my eyes were too dry.
These days I am doing really well. I have a little pain, and fatigue some days, but I have saliva, thanks to Evoxac, and tears, thanks to Restasis. I take way more medications than I like, but they seem to be doing the trick, so I will stick with them. (more on that in a future post).

APRIL IS SJOGREN'S SYNDROME MONTH! The Sjogren's Syndrome Foundation is doing a '30 Days to Imagine Having Sjögren's' campaign, with one statement for each day to educate people about Sjogren's. Since I am starting late in the month, I am posting 5 today, more to come in future posts. Try imagining what each of these situations would feel like...
1. IMAGINE seeing ten doctors over ten years and still not knowing what you’ve got.
That is Sjögren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjögren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjögren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjögren's!
5. IMAGINE that it’s terrifying to be without your water bottle to alleviate your dry mouth. That is Sjögren's.

HAPPY EARTH DAY EVERYONE!

ARTIST AND THERAPIST

Welcome to my blog. This blog is about art, healing, and using art for healing.

ART: I am an artist. My favorite media are colored pencils, papercutting, stained glass and silk painting. I like bright colors, and often contrast them with black. My themes are Jewish/spiritual, nature, humor, and anything else that calls to me. Sometimes I will show a piece of my art, and tell what inspired me, and about the techniques I used, and sometimes I will have patterns and instructions for projects you can try.

HEALTH: I have Sjogren's Syndrome, fibromyalgia, and a variety of other odds and ends. For people who don't know what these are, I will help you understand. For those people who know all too well what they are, I will write about coping, and about living your life the best you can with chronic illness, chronic pain and fatigue.

ART FOR HEALING: Evidence has shown that art can heal in many ways. The process of creating art can be soothing, can be a release, can be similar to meditation, and much more. Art also provides a means of expressing thoughts and emotions for which we can't find the words. I will write about these processes and benefits, and sometimes provide projects or ideas for you to try.

So, who am I? I am not an art therapist, but I play one on TV. Actually, I sometimes play one at my job on an inpatient psychiatric unit at a hospital. I am an occupational therapist, I work with a team that includes occupational therapists, art therapists, recreation therapists and chemical dependency counselors. I don't work full time, I work PRN. That means I work 'as needed'. Whenever someone else on the team is out for vacation, conference, sick or whatever, they call me in to cover for them. I lead groups on a variety of topics, including stress management and anger management, with a different slant depending on who I am covering that day. I am also a founding member and co-leader of our local Sjogren's Syndrome support group. My actual title is 'education chairperson', though I sometimes accidentally refer to myself as the 'science officer'. I am the one who either finds a speaker for our meetings, or leads the session myself, on some aspect of coping.

I also love books, and will share with you some of my favorites creative and self help books.