Why yet another Sjogren's blog? The idea was born when I was searching the web for information about what a person with Sjogren's can expect if they get dentures. I found nothing. I did find some forums by those who recently got dentures, but none were specifically about Sjogren's and dentures. So, for the next few weeks I'll chronicle my adventure into dentureland and will be most excited if someone else out there who has Sjogren's and dentures would chime in and talk about your experience as well. So, let's start with an introduction, a couple of introductions actually – First I'll give a brief introduction to Sjogren's Syndrome, then a little about myself.
What is Sjogren's Syndrome, exactly? Sjogren's Syndrome is an auto-immune disorder that attacks the moisture producing glands of the body. Typically those who have Sjogren's suffer from dry eyes and dry mouth, but may also suffer other, more debilitating effects. The Sjogren's Foundation website has a great deal of information about the disorder and is definitely worth going through if you or someone you know suffers from Sjogren's. The Sjogren's Foundation website reports that about 4 million Americans have Sjogren's and that 9 out of 10 victims are female. Another interesting fact is that about half of those who have Sjogren's have an accompanying auto-immune disorder such as lupus or rheumatoid arthritis; this is referred to as Secondary Sjogren's. The other half has no other auto-immune disorder so their type is referred to as Primary Sjogren's.
I'm sure you can tell that most of that information was pulled from the Sjogren's Foundation website (did I mention it's an excellent resource?). What does it all mean in everyday terms? Well, first of all, an auto-immune disorder is when your own immune system attacks your perfectly good, well-functioning organs. In the case of Sjogren's it means your immune system is attacking the glands that produce moisture such as the tear glands and the saliva glands (thus the dry eyes and dry mouth). Now, at times, it may seem like your immune system is a traitor and should receive punishment befitting such, however, I choose to see it as a system that is really confused. The immune system is actually a really good soldier. It does what it's told to do. Unfortunately, at some point in time, when the message to protect came through, it was decrypted with the wrong key and came out as attack. Being the good and faithful soldier, it took the order to heart and took off after the enemy…the moisture producing glands of the body. This disorder doesn't usually hit and disable overnight, most of the time it whittles away at its target over a long period of time so it can sometimes take years to get a proper diagnosis. The good news is, it only takes a blood test to find out. I know…I hate blood tests too, but at least there's a simple way to find out whether you have it rather than some long drawn out ordeal to go through in order to find out.
So, who am I and what right do I have to write about this subject? My name is Mary Martin and I was diagnosed with Sjogrens in 2001, so 10 years ago now (wow! I feel old now). I am an IT manager at a manufacturing company, so I'm really just an everyday person with Sjogren's who has no affiliation with the medical field at all. I'm one of the lucky ones, in my opinion. I have Primary Sjogren's so I only have to deal with the effects of Sjogren's. Based on what the doctor and I could figure out, I've actually been suffering from Sjogren's at least since high school. I'm told I'm a little unusual because it attacked my salivary glands first, I guess it usually attacks the tear glands first. I really didn't start having problems with dry eyes until about 5 years after my diagnosis, at least that I've noticed anyway. I suppose Sjogren's could possibly have something to do with the fact that I've never been able to wear contacts, but who knows. The other major area it has affected in me is my sweat glands. I sweat very little and my skin is always very dry. The down side to that…I lose a lot of hair! It seems to grow back almost as fast as I lose it, but it means my hair is always frizzy! Anyone out there have any remedies for that? I know I'm a geek, but that doesn't mean I like looking like one!
Here's my diagnosis story…maybe you've experienced something similar. I had been suffering with dry mouth for years prior to my actual diagnosis and dentists that I would go to would notice I had a problem with dry mouth and would ask all the usual diabetes questions. You know the questions…do you have diabetes, does diabetes run in the family, are you thirsty all the time, do you have to go to the bathroom a lot, etc… My answers were always "no". So they would shrug their shoulders and go on with whatever reason I was there for that time. Finally, in 2001, I was seeing yet another new dentist who noticed I had a very dry mouth (it was getting worse over the years) and went through the normal litany of diabetes questions. As usual, I answered "no" to them all so she said she was going to write a note for me to take to my doctor because she thought I might have Sjogren's Syndrome. She was speaking a foreign language as far as I was concerned, but, I dutifully took my note to my doctor who ordered a blood test for me. The blood test came back positive and my doctor then sent me to a Rheumatologist. I wasn't happy about that. I was sure I didn't have arthritis, why that kind of doctor. She explained that most people with Sjogren's also have some type of arthritis along with the Sjogren's so those are the doctors who know the most about it and can provide the greatest help. At my appointment with the Rheumatologist he did all the movement tests to see if I showed signs of any oncoming arthritis, which I didn't. So then he started asking questions about experiencing dry mouth, dry eyes, sweating, etc… I had told him that the one thing I remember clearly in high school is that whenever we would have to jog during PE class and it was quite a warm day out, everyone else seemed to come in drenched in sweat and I came in barely damp and really, really red. So, based on that conversation he said that it seems I've had Sjogren's at least since high school, possibly longer. I tried a couple of different medicines to try to stimulate the salivary glands since dry mouth was my major issue but was unable to tolerate either one of them. I don't remember the names of them now, but one of them gave me really bad stomach cramps and the other would make me sweat a little bit, then I'd be freezing cold for at least 2 hours or more. Well…I hate being cold with a passion so those pills went down the drain. I don't care if I would get used to them eventually, I can't tolerate cold!
So, here I am 10 years later, still suffering from dry mouth and a little fatigue starting to set in (that may have to do more with age than Sjogren's though). I don't have intolerably dry eyes, but I do have to use eye drops once in a great while. It tends to be worse if I haven't been getting enough sleep, and I'm still not taking any medications. The worst has been the havoc wreaked on my teeth. With no saliva there's been nothing to protect my teeth and the bacteria have had a hey-day! So…back to my first paragraph…I now have dentures and have no idea what to expect so I'll just chronicle my journey and perhaps someone out there with Sjogren's can provide some insight or pointers for me and others who are going down that path.
Have a great day and thanks for reading!
