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.

Gardening Makes Scents

May is gardening season here in Northeast Ohio. I always start out very enthusiastic, but get a bit less enthralled on hot August days when I need to water my plants so they don't dry up (then they would know what it feels like to have Sjogren's Syndrome :~) I have two raised garden areas, about 3' X 18' each. One is perennial flowering plants, the other is veggies and herbs. I decided that this year I wanted to reorganize the veggie/herb garden, and let the flower garden fend for itself (for the most part).
Yesterday I went to my favorite garden center, and browsed, and explored, and came home with 10 plants, twice the number I had planned to buy, but not unexpected. I have written in the past about how I like to drink water with herbs and/or fruit in it, so I was looking for plants that would give me tasty things to put in my water. My all-time favorite, which I buy every year, is lemon verbena. When you crush the leaves, they give off an aroma of lemon peel.(Now does my use of the word 'scents' in the title of this post make 'sense'?)
I planned to buy sweet basil, because I use it a lot in cooking, and I love its almost licorice-y scent. I did buy some, but I also bought cinnamon basil. How could I pass that up, when I love cinnamon so much?
There were so many varieties of mint, it was hard for me to choose: orange mint, chocolate mint, lime candy mint, spearmint, ginger mint (which I already have) and mojito mint, which is the one I ultimately bought. I chose it because I wanted a minty flavor, but mild, the leaves are a pretty crinkly bright green and because I like mojitos. Imagine taking a leaf or two from each of these plants and crushing them in your fingers. Mmmm... That would smell heavenly.
I bought some bee balm on a whim. I like the name, and the picture of the flowers on the label caught my eye. I'm not so sure I will like its tea-like flavor, but we will see. The other plants I bought were two tomato and three strawberry. To round out the garden, I already planted radish and beet seeds, which have sprouted mightily, and asparagus, horseradish, thyme and lavender, all survivors from last year. The horseradish is related to mustard, and is in bloom right now, with one-inch wide bouquets of tiny white sweet smelling flowers. Not what one would expect from such a pungent root. Two opposite scents form one plant.
My garden has lots of things going on in it, like my art. I don't have a lot of any one thing, because I don't need very much of each thing. This way, I get lots of entertainment for my eyes, nose and mouth. My ears will be entertained by hearing the bees sip on the nectar of the bee balm, and of my cat as she sits on her window perch (inside) and purrs as she watches them. My hands are already getting entertained by the feel of the soil, and the tender leaves of spring.
If you don't have time/room/energy/physical ability to have a garden, have a mini one indoors. You can get hanging pots, or pots that sit on your counter. You can get flowering plants, herbs, I've even seen strawberries and tomatoes in small containers. Many plants only need watering once a week or so. Cacti and other succulents may get by with only occasional watering  There is a plant out there to match every lifestyle. Having plants really livens up a room, and a soul. Have you had your green today?

Think Outside the Box

This is your chance to think outside the box and have some fun. This activity/exercise is good for getting your creative juices flowing, or a good procrastination activity, but it is also good as a distraction from pain. It is a simple idea, and can be done in infinite variations.
Take a piece of paper (or two or three...) Draw on it four or six or eight squares. It doesn't matter how many or what size. After you do it a time or two, you can decide what feels right to you. I like six squares, in two rows of three (or three rows of two, depending on how you orient your paper). Now- Put on your thinking cap, and think outside the box, literally. What is the box, and what would you find outside it? Draw whatever comes to mind around the first box. Now go on to the second. Try not to be critical of either your ideas or your drawing skills. Any idea is a good one, even if it doesn't seem like it..Imagine looking down at it, straight at it, or up at it.Imagine it different sizes, different colors. Different ideas come to mind.
So, what are some ideas to get you started? It is a house, and there are bushes and flowers around it, maybe a swing-set, (Don't get caught up in the fact that this is an overhead view.) You can even add what you would see on the surface of the box, in this case, the roof, maybe a chimney.  It is a shoe box, with a pair of mismatched shoes. It is a toy-box with the toys all over the place...You could also see the squares as buildings in a city, and connect them with streets, sidewalks, cars, people, dogs, etc. Let your imagination wander. Have fun.
Some variations on this are thinking about what would be inside the box instead of outside (this is actually easier, so if you are having trouble thinking outside the box, think inside instead). This could be a toy-box, shoe box, or house, or a deck of cards (draw any one you want), a book, a painting, a candy bar, etc. You could do the same thing with circles, or ovals, or rectangles or triangles, or heptagons.
That brings to mind a game we used to do as kids, a similar idea to this. One person makes a scribble on a piece of paper, the next person has to look at the scribble and find a part that resembles something, and using more crayons, makes it more recognizable. You could also do this by yourself.
Get absorbed in activities such as these, and for many people, their pain fades.The more detailed and absorbed you get, the more the pain will fade. Give it a few tries. It may feel awkward and difficult at first, but it should get easier.  

Spring Swinging

I had an urge this morning to run outside and swing on the swing-set next door. I love this time of year when each day something else pops into bloom. Never mind that last weekend we had 80 degrees F on Friday, and snow flurries Saturday. We expect that around here, though we are always surprised when it happens.
So back to the swinging. Many people, myself included, want to be outside when the weather starts to warm up.and there are so many things to do outside. I have been playing in my garden, getting it cleaned up, planting seeds, and transplanting some plants. I am done with that for now, and looking for other things to do.
I just got a job working with kids in a virtual school system (I am an occupational therapist). Since I haven't worked with school kids for several years, I have been reading up on therapy with kids to refresh my memory. Kids (and adults) with ADHD and related disorders tend to focus better when they get sensory input throughout their body first- things like running, jumping, climbing, pushing, pulling, rolling on the ground, etc. So my brain has been swirling with active kid-friendly activities, and I thought "swinging!" That used to be a favorite when I was a child, and I have done it off and on as an adult as well.
Swinging is actually a pretty good exercise, if you think about it. You lean back, extending your arms, supporting your upper body suspended from your arms, while your legs stretch out, putting your whole body in one long line. Then you quickly come to a sitting position, using your abdominal and arm muscles, and swing your lower legs back under you. Repeat over and over, flying high up into the sky. Feel the sun on your face, the wind in your hair, you are young once again.
Swinging is not as easy for me as it once was. I have bursitis in my hip.and swings these days seem to all be of the sling style, which press on my hip.I enjoy them anyway, in small doses. Other outdoor children's games and equipment that lend themselves to adult exercise include:running, skipping, jump rope (excellent cardio exercise), hula hoop and a variety of ball games. Bars and rings can be used, depending on height and positioning, and monkey bars are fun to climb (though the last time I tried, I found out that I had developed a fear due to my bifocals distorting distances. When was the last time you heard about someone with bifocals climbing on monkey bars?
Remember what your mother used to tell you, "Go outside and play". Go to a park. Take your children, or grand children, or dog or friend, or by yourself, just go. Play. Have some fun, and get some exercise while you are at it. Keep in mind you haven't done any of this stuff in a long time, so go slow, Choose activities that you think you will enjoy. and that you think you can safely do, considering how your body is doing that day. Push it a little, but only a little.If you push just a little, you will recover quickly, and want to go back. If you push too much, you will take longer to recover and not want to do it again.
Swing (or hula hoop) into spring!

A Prayer for Any One, Any Day

I want to share with you my favorite prayer. Even if you normally don't pray, keep reading. This prayer is non-denominational, and doesn't mention anything relating to G0d or religion until the last line, and you can leave that off if you want. I found this prayer in the Reform Jewish prayer book, Mishkan T'filah.It is normally read on Shabbat (Sabbath), but other than the last line, can be read any day. It was written by Rami Shapiro, and originally was published by the Reconstructionist Press in Kol Haneshama.

May these hours of rest and renewal
open our hearts to joy and our minds to truth.
May all who struggle find rest on this day.
May all who suffer find solace.
May all who hurt find healing on this day.
May all who despair find purpose.
May all who hunger find fulfillment on this day.
And may this day fulfill its promise.
Baruch atah Adonai, m'kadeish HaShabbat.
(Praise to You, Adonai our G0d, who sanctifies the Sabbath.)

I often can feel my attention and intention increase while reading this prayer, as compared to other prayers we read during the typical Shabbat service. I think that is because all too often, I can fit myself into one or more of these categories, and I am seeking healing.
For myself and for everyone, I pray for rest, solace, healing, purpose and fulfillment, today and every day.
Amen

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

Don't Wait Until...

I had an epiphany last week. I have been doing exactly what I tell my patients and readers not to do. I think  it has been a 'perfect storm' scenario that started it. We went to California for a week, across 3 time zones, which threw my internal clock off. I lost my job, daylight savings time started, and this headache returned.  For the past 5-6 weeks, I have had an almost constant headache, and greater fatigue than I usually have had. I have been able to continue to take care of most of my business, job hunting, writing this blog, etc, but my use of time has been less than efficient. I procrastinate, playing games on my phone, and looking things up on my computer. I am frustrated, unfocused. I am waiting until I feel better, until the fatigue goes away, until things get back to normal, and I can get on with my life.
WHAT??!!?? Wait a minute. This IS my life. This IS my normal (or a variant of it). If I am waiting to get back to that other normal, the one I used to have way back when, I am waiting in vain. I know this. I warn other people about this, and yet, I fell into it myself. Don't put off living your life, waiting until you feel better, or a particular event occurs. It may not occur, or even if it does, you may miss out on some wonderful opportunities while you were waiting. Live your life now, the best you can, with what you've got.
For the past 25 years, I have consistently had various types and levels of pain in various body parts. I describe it as being a member of the 'Pain of the Month' Club.I never know where I will hurt next, but when it shows up, it likes to stay for a month or two or ten. The fatigue I have only had for about ten years, at varying levels. The fact that this current pain is in my head compounds the cognitive problems that the fatigue causes, but it isn't anything new or unusual, just a variant.
Okay, so I realize that this is my life, no use waiting for it to get better (it might, or it might not, it might get worse). Now what? I need to get motivated, and to resist procrastinating. So easy to say, not so easy to do.
Having a routine and a schedule make the biggest difference. They both get me up and moving. One 'rule' I am instituting is using the morning time for me: exercise, grocery shopping, etc, and the afternoons for business: writing, job related pursuits, art, etc. I plan to not only have an ongoing to-do list, but pick out certain items from the list and what time I will do them. I will get up off of the couch more often, because sitting makes me sleepy, and sleepy plus fatigue makes me feel worse. I can set small goals for each day.
I will be am an active participant in my life. Now, if you will excuse me, I have some tasks to take care of.