The Sjogren’s Club

Posted by Shelley on Mar 12, 2009 in Autoimmune Conditions, Uncensored Shelley |

Of all the opportunities I’ve had in my life this is the one club I did not want to join! But I am in… really in. Like, I’ve pledged and been initiated for a long time now.

Here’s what I can tell you: Sjogren’s Syndrome (SjS)is a progressive autoimmune disease. It would be considered a connective tissue disease, sort of a cousin to Lupus or Rheumatiod Arthritis. SjS is a chronic disorder that causes insufficient moisture production in certain glands of the body. Basically, my normally protective immune system has decided to attack my moisture-producing glands, mostly my salivary and tear producing glands. It doesn’t necessarily sound like much and to many folks diagnosed with this condition it ends there. But according to the Cleveland Clinic website there are many more symptoms associated with the disease and guess what! They are all part of my membership in this club!

To get in the club, one must have dry eyes. This is the hallmark characteristic of SjS. My extremely dry eyes were confirmed by the opthamologist at UAB here recently when the Schirmer’s Test showed no tear production. I could’ve told them that. I thought that when I stopped crying it was a sign of maturity. The real deal is I have virtually no tears and I get a headache and feel like throwing up when I need to cry. Now I use Restasis, which initiates a little bit of moisture. I still don’t have many tears but I can look at a computer screen for a little bit longer.

To secure your spot in the Sjogren’s Club one must possess an extremely dry mouth and throat. This causes difficulty in chewing and swallowing, plus a decreased sense of taste and dry cough. It does nothing for my appetite! Again, up until recently, I thought it was normal. But I always wondered why I was constantly thirsty, even after drinking half my weight in water! Increasing my water intake helps but honestly, I have been thirsty for so long it really doesn’t bother me as much as the rest of the perks associated with my membership, which would be the following: extreme fatigue and joint pain. There is so much to address in these two things alone that I will save it for another post.

Now that I’ve researched it a bit more, my other symptoms fall into the “not so common” features of SjS. Irritation of the nerves in the arms, hands, legs or feet (neuropathy), feelings of numbness and tingling, easy bruising, fever and this lovely rash, which is my secondary automimmune condition (yes, I have two) known as vasculitis (inflammation of my blood vessels). Now, I’m not only a member of the club, I am like one of the top officers.

SjS is chronic and never really “goes away”, my doctors and I just try to manage it so that I am more comfortable. Vasculitis can go into remission. When it’s not in remission it’s called a flare. I am still looking for the manual on instructions for this part of the membership. Vasculitis associated with SjS is not common. It’s almost like I am in two clubs. Two for one!

I’ve kept this lighthearted and sort of sarcastic because when I decide to explain more about autoimmune disorders in further posts it may not be as funny. This whole thing has really cramped my style and no, I’m not dying, but sometimes I feel like it. You probably agree with me, that everybody’s got some membership to some club, whether it’s the your big toe hurts club or the chemotherapy club, or whatever in between. Life in this broken garden has some (joint) pain, (mental or physical) exhaustion and (non-existent) tears. It makes me even more grateful for the new body I’m going to get one day! That will be in the Heaven Club :) .

3 Comments

Tina Marie
Mar 12, 2009 at 9:12 pm

Kudos to you for your lack of censorship! and I definitely understand the “dark” humor take on life. If I didn’t laugh at my life, I’d go crazy.

I am thankful that you finally have a name for what ails you. Sometimes, even that can help ease the stress of it all.

***hugs***


 
Paula
Mar 15, 2009 at 8:26 pm

Welcome to this not so exclusive club.
I know the books say that half the people with Sjoren’s have only the dry eyes and dry mouth, BUT I don’t believe them.
I have met hundreds of people who are in this club of 4 million in the USA alone.
Maybe one or two that I have met have only those two symptoms, but that is a maybe. If i can talk to someone long enough, there is usually a history of the rashes, gi problems, dry cough, brain fog etc.
I am glad you find the Restassis helpful, I think it is helpful for less than 50% of the people, and it only works to enhance tear production in those who still have some left.
I can clearly remember being so excited when I finally had a “name”. Just knowing that all of it wasn’t “only” in my head was a great relief. And I no longer had to go from one health care provider to another with this long list of things that no one knew was really connected, and really just part of the inflammatory process.
I have created a website to provide accurate current information.
I hope some of your readers may find it useful.


 
shelley
Mar 18, 2009 at 11:40 pm

hey Paula, sorry it took me so long to get back to you… I’ve read your site and found some GREAT information, you have done an excellent job explaining what is going on with those of us with SjS… I will be in touch with you, I have a feeling we’ll have alot to talk about :) ! thanks for the comment and kudos to you for your site! I really like it!!!!!


 

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