How Dry I Am…
By Beverly Hicks Burch
In 1993 I finally got a name for the “thing” that had been making so sick and fatigued for years. Sometimes just having a name for your illness is a blessing…it serves to alleviate your fears that you might be crazy! Thankfully I was referred to a doctor who knew what he was doing, what to look for and how to look for it. Believe me when I say that was no small miracle as far as I was concerned…
Given the title of this blog, you may think I’m about to confess to some terrible secret. No, the problem is not alcoholism or any related complications. My illness is a chronic autoimmune disorder that affects approximately four million people a year…9 out of 10 of which are women. I am a Sjogren’s (pronounced SHOW-grins) Syndrome patient…
With that said, and because April is National Sjogren’s Syndrome Awareness month and in keeping with the “Women’s Health” series I started some time ago, I would like to share with you a little about my experience and a little helpful, informative information about Sjogren’s.
The shear number of Sjogren’s sufferers makes it one of the most prevalent autoimmune disorders, but I can imagine when you read the words “Sjogren’s Syndrome” your first reaction was probably, “What the heck is that?” That is a typical response of most people because they are more familiar with autoimmune diseases like lupus, scleroderma, Rheumatoid Arthritis and diabetes.
Although symptoms of Sjogren’s were identified as early as the late 1800’s, in 1933 Dr. Henrik Sjögren was the first physician to identify the illness. Because of his “discovery” the illness bears his name.
Now, keep in mind an autoimmune disorder or disease occurs when a person’s body is attacking itself and killing itself or parts of the body. This is called an overactive immune response. In simple terms that means in say the case of lupus, a person’s body may read the body’s liver as an unwanted and dangerous foreign substance. The body will then send “agents” of some type to the unwanted “item” or area for the purpose 0f eradicating or ridding the body of the perceived danger. When that happens, the body and the areas in the body affected are damaged and/or diseased…sometimes terminally.
In the case of Sjogren’s, the body’s white blood cells are attacking the moisture producing glands in the body and killing those glands. Hence, my title “How Dry I Am…”
About 79% of the people affected by autoimmune disorders are women. Combine that with the rate of incidence of Sjogren’s among female patients and you can see autoimmune disorders are a predominantly female problem. Yes, men can and do develop autoimmune disorders, but just not at the rate women do.
Not to make light of the situation, but one of the hallmarks symptoms of Sjogren’s is dryness, particularly dry eyes and dry mouth (again, “How Dry I Am…”). But, don’t be deceived or mislead…Sjogren’s can be a very debilitating illness to live with causing far more than “just dry eyes and dry mouth”.
- Dry eyes – this can lead to ulcers on the eyes, infections and blurred vision. Sometimes “dry eyes” result in a gritty feeling…like someone has kicked sand in your eyes. In some cases, the eyelid may actually stick to the eyeball. Oddly enough, dry eyes can lead to excessive tearing. Why? Well, the tear film that covers the eye has three major components: water, an oily layer and mucus. The natural oils in the tear film enable the film to cover the eye and protect it. As the film breaks down, holes begin to form in the film, resulting in the dry eye. The tear ducts go into overdrive producing water, i.e. tears, to try and make up for the other missing components. Sadly, this doesn’t work because the proper ratio of all components is absent and the eyes remain dry. Of course, then there are the times when tears are totally absent…even if you are crying! Believe me, that’s a most frustrating situation…to be angst enough to cry, but your body is unable to produce tears.
- Dry mouth – the complications of this is dental decay; infections, difficulty swallowing and chewing; oral yeast infections called thrush
- Dry or burning throat
- Dry cough and hoarseness
- Dry, cracked tongue – all of the oral complications can result in oral yeast infections
- Changes in taste and smells
- Digestive problems; reflux
- Vaginal and skin dryness; painful sexual intercourse because of vaginal dryness; vasculitis; Raynaud’s Syndrome
- Joint pain and problems
- Dry sinuses and nasal passages; this can cause difficulty breathing
- Peripheral neuropathy – tingling or a “pins and needles feeling” and numbness in the extremities
- Other organ involvement including but not limited to the brain, lungs, pancreas, liver and thyroid; swollen parotid glands
- Increased risk for non-Hodgkin’s lymphoma
- Fatigue…many times patients are overwhelmed with life altering, debilitating fatigue.
- Symptoms and complications can be life changing and debilitating in many patients.
If Sjogren’s is present alone, it is called Primary Sjogren’s, but if Sjogren’s is accompanied by other autoimmune illnesses, then it is considered Secondary Sjogren’s. In my case, Sjogren’s is accompanied by a laundry list of autoimmune disorders and chronic illnesses. Some days it feels like I’m hauling an anvil around on my back…
My official diagnosis of Sjogren’s came in 1993. I had been exhibiting severe chronic fatigue, dry, gritty feeling eyes, joint pain and weakness, muscle weakness, and a chronic dry cough among other symptoms. My teeth were even being affected…I had crowns that just wouldn’t stay on and other issues. When I made the statement to an acquaintance my teeth were being affected, she suspected what my problem was…she was a Sjogren’s patient also.
Many doctors were unable to diagnose the problem or simply overlooked important red flag warnings. I look back over the years since and I can see in hindsight how much my life has changed. It has been a life altering and sometimes overwhelming illness. I wish it was merely the “dry eyes, dry mouth” problem so many people assume it is.
The doctor I’ve used since 1993 knew what to do after listening to me give my history and after examining me. He also knew enough to know blood work can sometimes be like smiling faces…they can lie…Blood work and/or tests are not always the best diagnostic tool. Many outside factors can affect the results of blood work.
So, my Dr. X sent me to an oral surgeon for a lip biopsy. During the procedure a salivary gland was removed from my lower lip and sent to the university hospital pathology lab. The result came back and confirmed that yes, indeed, I have Sjogren’s. A lip biopsy is the most conducive way to determine Sjogren’s.
I have never been what you would call a robustly healthy person…even as a child. Knowing what I know now, it almost seems like I was on a yellow brick road leading right to chronic health issues and autoimmune problems.
Stomach problems have plagued me since I was an infant, and after having test after test run, doctors are still perplexed at what causes my gastrointestinal system to do the things it does. One very uncomfortable test was performed while I was several months pregnant. That my friends is a road you don’t want to go down…
I was told after one GI test and a turn in the hospital that I had a very sluggish GI system…as a matter of fact, the slowest one they had ever seen. Ya think?! My research on Sjogren’s has revealed this could be because of the lack of sufficient moisture, thus resulting in slow motility of the GI system. In addition I’ve been diagnosed with Irritable Bowl Syndrome (IBS or IBD), spastic colon and esophagus, colitis, and acid reflux.
Bev has lived with an upset tummy…
When I was first diagnosed my rheumatologist sent me to an ophthalmologist who examined and tested my eyes by measuring the moisture level and looking at my eyeballs in a Slit Lamp exam.
At that time, in 1993, the ophthalmologist determined my eyes were affected. He had used the Schirmer exam to measure the moisture in my eyes. (I have been told since the Schirmer exam is not used as universally as it once was and other techniques are used.) Based on the scale of 0 to 15 with 15 being the moistest, I was informed my level was about 3. Wow! No wonder I was walking around feeling like I’d had a whole sandbox kicked in my eyes!
By using sterile eye drops or “tears” I was able to raise the moisture level in my eyes for a while to 6. Since autoimmune disorders can have a degenerative effect on the body and its parts, that was not to last long. To keep moist eyes over the years has been a struggle.
In 2006 I was told my tear film was totally gone. My eyes are constantly dry. I’ve had complications such as inflamed eyes; red, irritated bumps or knots appearing for a time on the rim of my eyes, excessive tearing and some blurred vision. There was one period I call my “wraith” period because my eyes were in such terrible shape, that’s the best way to describe how I looked…and felt…
To maintain any moisture in my eyes I have to use the sterile eye drops or “tears” several times a day and during really bad flare ups a lubricating ointment. Although the ointment is called a “night time” application, my eyes are so dry that on occasion day time usage is needed. GenTeal makes a gel drop that is for moderate to severe dryness. Since it’s a little more viscous than other drops, it gives me more relief than a standard eye drop does.
If all else fails, then surgical measure may have to be taken. This involves implanting silicone plugs into the tear ducts in an effort to prevent as much moisture loss as possible. (I personally have been cut on enough in my life and hope to avoid this procedure, but have been advised it may be in my future.)
A Sjogren’s patient is advised to visit the ophthalmologist every three months. In many cases uninformed and restrictive medical insurance company policies and cost make this prohibitive for the patient.
Over the years I have seen a daily decline and degeneration of my health. No matter how fastidious I am about dental hygiene, I battle tooth decay and dental issues. When my mouth becomes extremely dry I develop painful sore in the angles of my mouth. Many times this can be caused by oral yeast (thrush). To battle that I use a concoction called “Magic Mouthwash” made up of ingredients like nystatin, lidocaine, an antihistamine and sometime something like Mylanta.
My mouth stays so dry that I am seldom without something to drink right by my side. Over the years my devoted canine companions have learn if Momma picks up the “big glass”…then she’s on the move. They hop up ready to follow me where ever I go.
As far as glandular problems…around October 2006 I was finally diagnosed with hypothyroidism…something I was not surprised about. I had suspected it for years and exhibited many symptoms. I have a parotid gland that seems to stay swollen and besides the other various smaller (and uncomfortable issues), I am a two time non-smoking lung cancer survivor.
In 1982 a tumor and a portion of the lower lobe of my right lung was removed. I was cancer free until 1995 when I went through another bout with lung cancer. This bout resulted in 60% of my left lung being removed. Sjogren’s can affect a person’s lungs, but did Sjogren’s cause my lung cancer? The lungs are one of the many internal organs Sjogren’s can affect…but, cancer?
No one has any earthly idea why a non-smoker like me has gone through two bouts of lung cancer. I had no risk factors per say…no extensive exposure to second hand smoke…had not lived with a smoker…but I do have those pesky autoimmune disorders.
I would say in my case, the fatigue and joint pain has been as severe or more severe as the dryness. Combined with Fibromyalgia and chronic fatigue syndrome and you can understand why some days I feel too tired to even breathe.
There is no cure for any autoimmune illness…Sjogren’s included. There is no “magic pill” either. In handling Sjogren’s, as with other autoimmune illness, the best you can hope for is management of the disease or a slowing of the disease. This is done by learning to pace yourself…learning to say “No”, making some lifestyle changes, good doctors, and yes the use of over the counter and prescriptions drugs.
I mentioned earlier the use of artificial tears for the dry eyes. For the oral dryness there are medications, like Salagen. There are several other products on the market to help with oral complications of Sjogren’s. You may have to take pain medication for the joint pain, avoid situations that will aggravate your dryness, address complications and practice good nutrition and proper rest. In some cases you may have to take a disease modifying medication like Plaquenil, Enbrel or Methotrexate. I have been on Methotrexate for over a year now, but like all drugs in this category it comes with serious possible side effects.
Yes, I know this all may sounds dismal, but it doesn’t have to be. Supportive friends and family can be a lifesaver, so make sure they are informed about you disease.
Learn to love the current you. It was very hard to accept myself and what was happening to me at first. I felt like I was loosing myself to a strange, unbeatable disease. As a result, I pushed myself in way I probably shouldn’t have resulting in unhealthily stress and strain.
When I first met my current husband I told him how I felt and I felt like illness had turned me into a faded beauty. I told him I wished I looked the way I did in my 20’s and 30’s. He said, “Honey, you may not feel like a 27 year old beauty, but you are a 47 year old beauty and I think your gorgeous…and you’re mine!” What a guy like that?! How can you not love a guy like that? It’s certainly a far cry from Gomez the ex. When he walked out on me and our 27 year marriage, he said, “I don’t care if you ever have any f*cking (medical) insurance! I didn’t want to take care of you, I hated taking care of you, but I did! So, there!!!” No, there is certainly no chivalrous knight behind his low life, yuppie wanna be facade… And, his “taking care of me” was puny in many ways and avenues…
Over the years I have found things I enjoy doing. They help validate who I am. This is a God-send for self confidence and self worth. Many of my most enjoyable pastimes can be done sitting under the covers of my bed. I read, stay connected to the world via the internet and the laptop my Tall & Handsome made sure I got. I can quilt for small amount of times and with rests. I’m a computer gamer (MMORPG’s) and of course, I can write.
T & H also brought home a little four legged, practically hypo-allergic companion…our little Miniature Schnauzer Watson the wonder dog, and in my opinion one of the best little mood lifters there is. Nothing warms my insides like those two little eyes looking at me adoringly.
Would this cheer you and comfort you if you were sick? You betcha!!
No, life did not end…it was just reinvented…and in some ways for the best…
So, if you suspect Sjogren’s or any other autoimmune illness, get to your doctor as soon as you can. Starting a proper health care and management regime can turn “How Dry I Am…” into “How Strong I Am…I’m a Survivor…”!
© 2009 Beverly Hicks Burch All Rights Reserved.