Sjogren's Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

                                                                           

Dryness is a problem

The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a "foreign body" in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like MI Paste on your teeth under the nightguard to strengthen your teeth.  This. picture shows a whitening tray but it looks like my nightguard

Night Guard for teeth

You can also massage your salivary glands to help stimulate saliva flow. It works best on the large glands near the temporomandibular joint located in front of your ears.

At the last Sjogren's Canada Patient Conference I asked Dr. Yepes if Salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some salivary glands spared. Up to 50% of your glands can be functional and yet you still feel very dry.

I added this picture because in the past my eyes were so dry that I would look at my computer screen with my eyes half closed because they were so dry and painful.  The dryness also made me go to bed early sometimes because dryness can makes your eyes feel so sore you just can't keep them open comfortably.  I tried punctal plugs (a doctor can plug your tear ducts so the tears stay on the eye) and they helped somewhat. In fact I have had them in my lower tear ducts for the past six years. Then since I was still dry I was able to try Restasis prescription eye drops and they worked for me. That was a break since they don't work for everyone. These drops contain cyclosporin and while they do sting a little, it's worth it for me. I get best results by putting them in my eyes  and then shutting my eyes for a few minutes.

Restasis

I use hormones too.  Dr Ann Parke has spoken at most of the annual conferences of the Sjogren's Society of Canada and is a leading expert on the subject.  She touched on this subject favourably so I am more reassured about the effects of hormones than I would be otherwise. Hormones help with the vaginal dryness and the frequent UTIs.

Sjogren's is different for everyone, but I find it almost a part time job just to care for Sjogren's Syndrome alone.
 
I just read today about acupuncture and Sjogren's in Julia's Reasonably Well blog about Living Well With Sjogrens    She has a great picture of acupuncture points and some useful advice too.

Also, I have found www.dry.org to be a good source of practical info from Dr Robert Fox, who is a leader in the field of Sjogren's Syndrome. If you look for research on PubMed you will find many papers credited to him.

How to bandage a skin tear if you're allergic to adhesive

Some more advice from Judy for people who are allergic to tape and bandage adhesive.  Judy has many areas of expertise.

When I get a skin tear, I first put on an antibiotic ointment.

Try to keep any skin in place by pushing it over the tear.

Then I put a sterile non-stick pad over the skin tear.

Then I use a piece of a roll of the self-adhesive elastic bandage like the one pictured below.  There are many different brands at your drugstore or pharmacy.

You cut a piece that will fit around your arm wound and hold the sterile pad in place.  You might have to do two wraps of it.  It will keep the sterile pad in place without using any kind of adhesive tape.  This tape sticks to itself and not your skin.  I am allergic to any kind of adhesive tape and the regular adhesive tape pulls off my skin - so this is very good for me.  You might want to try it. 

Plantar Fasciitis in Rheumatoid Arthritis

Here is the story that my friend Judy told about her bout with Plantar Fasciitis. She generously shared her doctor's solution.  This worked for her - neither of us is a doctor so check with your doctor first. 

It always helps to know the possibilities though so here it is.  Some Doctors say there is nothing that can be done so it is good to know the possibilities.

"I had a very bad spell with plantar fasciitis.  I got out of bed at night and it was like lightening was going through my left foot and leg.  I could not put any weight on my foot at all because it was so painful.  The foot doctor said that I had plantar fasciitis and apparently had small tears at the part where the connective tissue joins the bottom of the heel.  I really stepped on my foot the wrong way.

The treatment is a night splint OR they can give you a very painful steroid shot right in the bottom of the heel.  I choose to try the night splint for 2 weeks.  My foot slowly got better and then it did heal without having to have the steroid shot."

Active Ankle Dorsal Night Splint (DNS)

FRONT VIEW OF NIGHT SPLINT              SIDE VIEW OF NIGHT SPLINT

This is the kind that I use. The night splint comes in small, medium and large.  It is interchangeable from left or right foot by moving a piece in the front.  I also wear a night splint for pain in the heel or ankle.  You wouldn't believe how much this helps.  They do say that you can walk a short distance in this splint as it has a rough piece on the bottom of the toe part - BUT - don't try to do that.  The splint is not for walking - only sleeping or resting.

 I wear my splint over a long, cushy sock so that the Velcro doesn't bother my skin."

Indications for using this night splint: Plantar Faciitis Achilles tendonitis/repairs Foot drop/Neurological deficits Stroke patients Heel Spur Syndrome Sore Heal/heal pain Goals : Decrease pain in A.M. Delay heel spur surgery Decrease anti-inflammatory medications Decrease pain symptoms Improve ambulation Prevent contracture of Achilles Tendon (from http://www.achillesmed.com/phantom-dorsal-night-splint.html ) There are also exercises that can be done to help plantar fasciitis - see a foot doctor for instructions. You also need lots of rest as spending long hours standing will aggravate it.

Your Brain on Pain

I have been worrying about brain power so I thought that reading blogs about the topic might help. One of them said "Ban the calculator" which lead me to think back to the year when calculators became so cheap that we gave them to people for Christmas presents. That was a big deal back in the 70s (?) and now you can get them free.

Maybe it's a sign of aging that I can now remember when commonplace items of the present were not a part of my life.

This worry about memory may be because of the "brain fog" connected to medication and illness that affects cognitive abilities.  Even mild sleeping pills can cause a decline, especially in the elderly (That starts when?).

Honestly I think that pain also has the effect of dragging down your thinking powers and your will to do things.  Before I was diagnosed with RA I has serious symptoms like fatigue, swelling, pain and weight loss but all I could think of was successfully continuing my life as it was.  That took all of the energy I had.  Even working only part time I would come home from work and fall asleep with my clothes on. So there was no energy left to help me develop ideas to solve the problem on my own or to find help for a solution.

It's amazing to me that so many people with chronic disease get past this and do so well at helping others get out of the trap. An effective treatment for your health problem is the best way to get out of this slump but that is as far away as the gold at the end of the rainbow.  Proper treatment was what finally got me on the slow train of not recovery exactly, but improvement.

Here is the link to the LifeHack post on increasing brain power
http://www.lifehack.org/articles/productivity/10-simple-ways-to-increase-your-brain-power.html
Tip #1 also sounds like a good way to have more fun, though it won't be sky diving for me. 

Really and selfishly my prime goal is to be happy and I think I finally decided that eating too much is not really making me happy.  I would like to be as happy as my old avatar looks like she was, or this baby.

Pathways to knowledge

Turkey season is coming. Here is a picture that my friend Phyllis took of  "The Bird Itself" in her driveway in New York state. It scared her a bit. Look at that face.

Phyllis was an avid gardener and was part of a Yahoo RA group called RA-Factor that I have been in for the last 10 years. Needless to say we have all grown close. People come and go depending on circumstances but many of us stay with it for the support, information and for the freedom to complain about RA to people who understand the issues and do not take it personally.

She was the first person to offer advice and she enjoyed telling stories about Mr. Sticky Fingers - her grandson, making tags for people and sharing advice with the group.

She started feeling unwell in general with a cough and a cold, a headache and back pain.  Her doctor suggested bronchitis and gave her an inhaler and prednisone. It was not the first appointment she had that was inconclusive.  With RA it's easy to assume that any issue is connected to the inflammatory disease.  It turned out that she was fatally ill and died a few years ago.

So this is a reflective post.  I remember reading about morbidity and mortality in RA on the American College of Rheumatology website years ago when I was avidly searching for information. That was depressing though I know the outlook is better now.  I kept finding new complications and issues that might occur, but managed to keep my anxiety level low by doing what doctors call watchful waiting.  So I watched and I waited and nothing ever developed.  That was one good way to make the anxiety level drop, even though it took many years. 

I think anxiety is a real problem with a chronic disease and knowledge is a good way to dampen it.  Things have improved in access to information. When I was diagnosed 30 years ago if you wanted info the sources were magazines, newspapers or books. Of course doctors were a possibility but I was feeling so shocked that I had trouble absorbing what the doctor had to say.

The internet has been a big help to me.  It has made me much more informed and has speeded up my treatment because now I know the vocabulary and which questions are the right ones.  It also helps me to know the treatments and what to expect if the medications are working.

  

                                                                                    Merrimack Pharmaceuticals
                                                                     Pathways to Knowledge

Now there are so many pathways to find the information that you need.  It's like going from the horse and buggy to a spaceship - from library books to 30 gigabytes.  Our first computer was a Vic 20. That means the memory was 20K and I think it had 3K of RAM.  We could play Pong and it was fun.

We still have one of these in the basement

It was an exciting learning experience but still a long way from social media and smartphones.  So I would say we've come a long way in healthcare and every day we see the results of the progress.

Support and information is now available at any hour of the day or night. That alone is enough to help us all to feel a bit better.


                                                 

Managing Big Problems in Chronic Disease

                                                                          Lars Hagberg
With chronic disease some days all of your problems look like big ones, especially in the fall and winter when it is dark and gloomy, cold and wet.  I find that large vegetables cheer me up quite effectively but that is not a life solution.

This morning I read a blog by Carolyn Thomas at The Ethical Nag http://ethicalnag.org/2012/11/01/multiple-chronic-conditions/

She talks about what we have to do to manage our chronic disease well and lists the four main areas we have to juggle.  I know from experience that the hard part is maintaining "simultaneous control" over all aspects of our conditions in the long term.

I felt a lot better to hear that I was not the only one who is challenged in one area or another and the next reading I do might be about emotional eating.  It's hard to say your diet is good with all the edges filled in with tiny chocolate bars, dry roasted peanuts and little bags of chips and cheetos. Maybe more sushi is in order.

                                                          sushi by Sarah Yip


There is so much information and advice available everywhere we look.  I have been developing a list of links and have almost filled up my new free program called Evernote - maybe not filled but it refused to add new links in my main document for a while. (Update: it's back to normal now)

Online patient communities are a great source of support and solace.  Talking to friends who totally understand what you are going through makes you feel better.  They are so easy to find on Twitter and in patient groups.  I can't say much about Facebook as I skipped that step.

And for my Fall Resolution: Go out and see more people.  Or if that seems impossible I'll invite them here for pizza or tea and cookies.  Maybe a cake of my dreams.

You see that's the problem of the moment - eating.  Looks like Carolyn has a post for that too.