April was Sjogren's Syndrome Awareness month and I didn't write about it as I thought I would. I guess that's because I'm already all too aware of this disease. I have it. Believe me, I'm aware. But I didn't write about it because I was angry at the community here. I've cooled down now and I know the anger wasn't really about anyone here. It was all mine. And the disease I have was part of it.
Around four million Americans have this autoimmune disease. More than 90 percent of them are female. More people in this country have Sjogren's Syndrome than Multiple Sclerosis. So why all the ignorance about it? My theory is that because it mainly attacks middle age women, it hasn't gotten its share of research dollars or attention from the media. Or maybe it's because the description doesn't sound so bad. The main symptoms are dry eyes and dry mouth and aching joints. It doesn't sound too terribly bad, right?
Be that as it may, Sjogren's Syndrome was recently added to the Social Security Administration's list of diseases that make one eligible for disability. And, if you go to websites with support message boards, you can read the stories of people who can hardly get out of bed some days, people who have to ration their energy like it's gasoline during WWII.
"Sjogren's syndrome is an autoimmune disease. Autoimmune diseases are characterized by the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. This particular autoimmune illness features inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and lips." says the Medicinet website at http://www.medicinenet.com/sjogrens_syndrome/article.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis
What that means is your eyes feel like Lawrence of Arabia marched through them and that the sand of a thousand camels has clogged your tear ducts. Your eyes feel gritty all the time. It means that your mouth is so dry that water doesn't make it feel better. It means you have a thirst that is never quenched. It means you sometimes choke swallowing dinner. It means that you sometimes feel like you are burning in the core of your body and that you need to cool down or you're going to melt down. It means that you are exhausted some days when the fatigue doesn't go away even with a bit of rest. It means that you wake up tired after a full night's sleep some days.
Dry nose, throat, and lungs, vaginal dryness, swollen salivary glands, and fatigue are other hallmarks of the disease. . More severe cases can affect other parts of the body, such as blood vessels, the nervous system, muscles, skin, and other organs. This can lead to muscle weakness, confusion and memory problems, dry skin, and feelings of numbness and tingling. A few cases develop into lymphoma.
Oh this is just one lovely disease. It hits you when you are in middle age, and already facing issues about aging and menopause. Then, it ramps up the process, drying your skin, attacking your body. Like all immune diseases, this is a disease where your body turns on itself. Talk about betrayal. One day, you are able to do it all and then slowly, you have to chalk stuff off the list of things you can do until it scares you. What will it be like when you turn 60, or 70 if it is bad now, when you're 50?
I wonder that often. I try not to, but I do.
There is no cure for this disease that robs you of your self-esteem and energy and steals many of hours of your life that you could really, really put to good use.
Still, I'm one of the lucky ones. My disease was diagnosed quickly by a really good doctor. There are stories of people whose disease wracked their bodies but who were not diagnosed for years and years. I had the disease probably about a year before it progressed to the point where I realized it was more than itchy eyes from allergies.
I realized it was time to see the doctor when my father died and no tears fell down my face as I cried. Not one single tear. This is unusal for me because I'm the type who tears up just looking at photos of cute kitties. I had been worried about increasing joint pain, too. I just thought it was old age creeping up on me. As for the dry mouth--I feared it was the thirst of diabetes, as that disease runs in my family but I had escaped it up to that point.
Sjogren's Syndrome is often diagnosed by rheumatologists. My regular doctor sent me to one. Dr. John explained it all to me. He decided from my lists of symptoms that I do have Sjogren's and determined that I have primary Sjogrens, which is a good thing because secondary Sjogren's is more complicated and goes with diseases such as rheumatoid arthritis, systemic lupus erythematosus ("lupus"), polymyositis, and some forms of scleroderma. Approximately fifty percent of people with Sjogren's syndrome are described as having secondary Sjogren's syndrome.
It's complicated to diagnose this disease. It requires extensive medical history, blood tests for antibodies (but often the antibodies don't show up, so this test is not reliable) The gold standard of tests is the lip biopsy where a doctor slices into the lip to take out some salivary glands and examine them to see if they are damaged. My doctor suggested I do this and I went to the place he suggested as this is supposed to be something that can be done on an outpatient basis.
The doctor I saw for the biopsy didn't want to do it. I am allergic to corn and wheat and a host of other things. He ridiculed me and said it was stupid to bother with the procedure because even if I have the disease there is no cure. He was a jerk. I walked out and called the reumatologist who had recommended this guy. He sent me to another doctor. Her name was Dr. Troublefield which cracked me up but she was a dynamic lady, a former discus thrower and when she learned my daughter also throws discus and was in the waiting room, she had the nurses page her and bring her in so she could meet her.
We hit it off. Dr. T was ready to do a biopsy in a few weeks but then when she heard about the allergies to corn and wheat, she realized it would be difficult to find pain killers and such that I could take afterward. She reluctantly told me it would be best not to do the test, and just continue on the premise that I have the disease and treat the symptoms. My primary doctor pointed out that it wasn't like I HAD to have the biopsy as I would if cancer were suspected, so why go through the horror.
Scary stories on the support boards at a site called Sjogren's World made me glad I didn't do the biopsy. Some folks had horrible scar tissue and swelling. Some got infections. Maybe it was just as well I didn't have to do this gold standard test.
But it was still tricky to treat my symptoms. Many eye drops contain corn-derived products. I had tried many OTC types only to discover that they blurred my vision or turned my eyes into swollen, red orbs resembling Halloween mask eyeballs. The ophthalmologist suggested I take flax seed oil supplements and he prescribed Restasis. Both things worked a miracle. Within a month, I found I had a few tears again when I cried. Taken faithfully, this drug has restored my vision and my eyes. I'm grateful. I'll have to take it the rest of my life. But I'm totally willing to do this. I thought I was going blind at one point. I could only read large print. Now, I'm back to reading everything, even the fine print.
Most people with Sjogren's can use mouth sprays or suck on sugarless candies to keep their mouth and throat moistened. I can't. All of them contain corn products, corn sweeteners such as xylitol or some other corn-derived sweetener. I can have candies that just contain sugar--but they rot your teeth and people with Sjogren's already are prone to tooth decay from lack of saliva.
So, they had to get a compounding pharmacy to make troches, or lozenges that I could suck on to stimulate saliva. They taste awful. They contain a lot of salts. My doctor said that I could suck on small pebbles to stimulate saliva. I decided on another creative method. I would look at glossy cookbooks in the library or at luscious food photos on the internet and discovered that even reading about recipes and imagining how they would taste helped stimulate saliva production. There are drugs, such as Salagen, that can stimulate saliva flow. But guess what? One of its main ingredients is corn.
Non-steroid anti inflammatory drugs help lessen the joint pain and keep down the inflammation in eyes and mouth. I don't need to take these every day--and I'm lucky that Aleve caplets contain no corn products. I take Aleve as needed, which means I can sometimes go for a week or two without it but then I have a flare up of Sjogrens.
Sjogren's waxes and wanes, with some flare ups lasting just a few days and other times several weeks. I have learned to rest, to pace myself, to be more patient because of this. I used to rejoice during the non-flares and try to do too much. I have since found reasonable pace at all times works best.
DMARDS (disease modifying anti-rheumatic drugs) are also known as SAARDS (slow acting anti- rheumatic drugs) may be used to treat severe cases of Sjogren's syndrome. As their name might suggest these medications take some time to be effective, up to several months. I don't need these--yet. However, I have had to search out corn-free vaginal lubricants and moisturizers and got recipes from the compounding pharmacy for my own mouth moisturizer spray. And, I go through gallons of skin lotion because the dry skin is worsening.
Sjogren's is different for each person who gets it and so far, my disease is slowly progressive, not rapidly progressive. There are stretches when I feel fine and begin to wonder if I really do have it! Just when I have those thoughts, it flares up in earnest--like today. I can feel the slow burn starting in my mouth and going down my throat. I can feel it in my vagina, too. Like I've been burned there. The relief will come when the two Aleves I just took start to work, and when I drink some more.
There are days when just sitting in my chair with my cat is enough for me to do. I do more handwork on those days. I cross stitch. I clip and organize coupons, I read. I often joke that this disease doesn't kill you, it just sometimes makes you wish it did.
Life is still a gift we don't return--even with this stupid disease I contend with. I'm not in it alone. Nearly four million others have it--and I guess we would like others to be more aware of it, and more understanding. It's not all in our heads. It's a real disabling disease. It's just that sometimes we are okay and sometimes we are far from it.
When I don't post on the message boards, it's because I'm having a flare up and I'm scared of sounding stupid--or angry. The component of this disease I don't like to think about or admit is that during severe flare ups, it can cause cognitive difficulties or brain fog. It makes it hard to think. It feels frightening and confusing. I have discovered that when I post to the boards during those times, I am often misunderstanding others' posts and then ticking them off. Or they think I'm angry sounding when I didn't think I was.I have learned that the anger comes from having to make so much extra effort to be "normal." I learned I AM angry I have this disease and I found from the feedback on the boards that I had to admit this to myself and deal with it better or it was going to spill out in ways that would hurt everyone around me.
If I'm stuck having this, at least I'm learning from it. Perhaps in some way, I've also helped others gain awareness of Sjogren's Syndrome and to have some understanding for those afflicted with it.
If I've donethat, I'm not angry anymore--well okay, I am, but I'm working on it.