Sjogren's Syndrome. What is it? I was diagnosed with this difficult to pronounce disease from my rheumatologist. I thought, no biggie, just dry eyes, mouth and skin. For years I've thought, that was it. Until recently. A friend of mine told me he also had it. He seemed to think it was a serious issue. I wondered why he thought this way... Then a few days later, I noticed on Twitter that someone I follow had mentioned it was Sjogren's day and had posted a link to a site about it. This is the first thing I saw:
Shocking to say the least. I had no clue that all of these symptoms were involved! I have had so many of these, and it hit home with me. The neuropathy, stomach problems, muscle pain, neurological issues, and of course the dryness. My doctor seemed to make light of the Sjogren's and so I didn't give it a second thought. It's a wake up call to me now that I should research something when a doctor mentions it, or diagnoses me with something. A friend of mine is dealing with complications from this disease, and is slowly on the mend. It was great to see you last night Dave. Brenda too! Thanks again for the scrumptious dinner and red velvet cupcakes which were divine! Love you both!
Well, to update how I'm doing... I woke up today in a lot of pain. It's pretty much all over. Last night it started with shoulder pain. I took a pain pill (I haven't had to take any for quite awhile because I had been feeling okay), and I was able to sleep fairly well. When I woke up early this morning, just getting out of bed was painful. Letting the dogs out, woof-woof, feeding them and then making coffee was draining. I managed to make myself an egg for breakfast then crawl back into bed where I am now writing this blog. Oy vey. This disease is so unpredictable, annoying, painful, draining, and just a real pain in the ass! Okay, okay, I know, quit complaining! Time for some quiet time and to meditate... Ohm...
I also applied to go to Washington D.C. again in September. I'll find out by August 3rd if I get to go. I really hope so. I am ready this year to have my voice heard! I'm going limp around the halls of the House on Capitol Hill and speak up! Last year, I was a bit timid as it was my first time to do advocacy work in person with members of Congress and a Senator. Not this year! I'm more vocal, determined, and the issues that have to do with health care and rheumatology are so important to me. Go Michelle, go Michelle! Yes, I'll be my own cheerleader!
Another thing I've been doing is working on the online auction that Arthritis Introspective is having in November of this year. We are having the auction to raise funds for our annual Gathering that will take place here in Houston. Probably in March of 2012, dates to be confirmed soon! The Gathering is a wonderful event. I've met so many great people with arthritis that inspire me, are so uplifting, and are so welcoming. Great personalities that have a sense of humor too. I recommend anyone that has arthritis to try and attend the next Gathering! You won't regret it. It's changed my life for the better. So, I've been working on writing letters, sending emails, brainstorming on ideas of which companies to contact. So far, I'm enjoying it! It's cool to be doing something important and that I'm capable of doing on my own time, when I'm feeling well. I've been working with Scott from Arizona on this project. He's great as he's done this before and has given me a lot of advice and information. Thanks Scott!
I also want to do a separate artist event. There's a cool online site where artists can upload their art and people can buy prints, notecards, etc. with the artist's work on it. So really the artist doesn't lose anything because they keep their original artwork. I think it is going to turn out well. So if anyone has artwork or something they'd like to volunteer for the auction, hey, hit me up! Or just send me money. LOL! Donations to AI actually are important. You can donate at the website: Arthritis Introspective
Well that's all of my rambling for now! Hopefully I'll have good news to report later about our auction, going to D.C. (my fingers are crossed), and hopefully I'll be feeling better too.
Enjoy your Sunday! Blogger out!
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| You can view a larger version of this on the website: http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms |
Shocking to say the least. I had no clue that all of these symptoms were involved! I have had so many of these, and it hit home with me. The neuropathy, stomach problems, muscle pain, neurological issues, and of course the dryness. My doctor seemed to make light of the Sjogren's and so I didn't give it a second thought. It's a wake up call to me now that I should research something when a doctor mentions it, or diagnoses me with something. A friend of mine is dealing with complications from this disease, and is slowly on the mend. It was great to see you last night Dave. Brenda too! Thanks again for the scrumptious dinner and red velvet cupcakes which were divine! Love you both!
Well, to update how I'm doing... I woke up today in a lot of pain. It's pretty much all over. Last night it started with shoulder pain. I took a pain pill (I haven't had to take any for quite awhile because I had been feeling okay), and I was able to sleep fairly well. When I woke up early this morning, just getting out of bed was painful. Letting the dogs out, woof-woof, feeding them and then making coffee was draining. I managed to make myself an egg for breakfast then crawl back into bed where I am now writing this blog. Oy vey. This disease is so unpredictable, annoying, painful, draining, and just a real pain in the ass! Okay, okay, I know, quit complaining! Time for some quiet time and to meditate... Ohm...
I also applied to go to Washington D.C. again in September. I'll find out by August 3rd if I get to go. I really hope so. I am ready this year to have my voice heard! I'm going limp around the halls of the House on Capitol Hill and speak up! Last year, I was a bit timid as it was my first time to do advocacy work in person with members of Congress and a Senator. Not this year! I'm more vocal, determined, and the issues that have to do with health care and rheumatology are so important to me. Go Michelle, go Michelle! Yes, I'll be my own cheerleader!
Another thing I've been doing is working on the online auction that Arthritis Introspective is having in November of this year. We are having the auction to raise funds for our annual Gathering that will take place here in Houston. Probably in March of 2012, dates to be confirmed soon! The Gathering is a wonderful event. I've met so many great people with arthritis that inspire me, are so uplifting, and are so welcoming. Great personalities that have a sense of humor too. I recommend anyone that has arthritis to try and attend the next Gathering! You won't regret it. It's changed my life for the better. So, I've been working on writing letters, sending emails, brainstorming on ideas of which companies to contact. So far, I'm enjoying it! It's cool to be doing something important and that I'm capable of doing on my own time, when I'm feeling well. I've been working with Scott from Arizona on this project. He's great as he's done this before and has given me a lot of advice and information. Thanks Scott!
I also want to do a separate artist event. There's a cool online site where artists can upload their art and people can buy prints, notecards, etc. with the artist's work on it. So really the artist doesn't lose anything because they keep their original artwork. I think it is going to turn out well. So if anyone has artwork or something they'd like to volunteer for the auction, hey, hit me up! Or just send me money. LOL! Donations to AI actually are important. You can donate at the website: Arthritis Introspective
Well that's all of my rambling for now! Hopefully I'll have good news to report later about our auction, going to D.C. (my fingers are crossed), and hopefully I'll be feeling better too.
Enjoy your Sunday! Blogger out!
I hope you get to go to DC again. I saw that somewhere also but unfortunately there is no way I have the energy to forge to Washington DC and hit on Congress. Besides I am not sure they would want me there...I am NOT the silent type ;-) Maybe next year for me. And yes Sjogrens is a very serious disease. I really hate how docs make light of so many of the autoimmune illnesses. You can bet your bottom dollar if they had them, it would be an entirely different story.
ReplyDeleteHi Deb!
ReplyDeleteI should find out this week if I am going!
I'm follow politics and my representatives do not represent my needs or ideas... It's tough to hold your tongue when you're there sometimes!!
How have you been doing??
Hi Michelle! Finally got a chance to catch up on some of your more recent posts. Thank you for taking the time to go to D.C. if you get to go!! That is fantastic, we really need voices that can speak from experience for our cause. I should really join you one of these days, lol! On a separate note, it's amazing what doctors DON'T tell us, isn't it? It's hard to have a trusting relationship with them when these things happen.
ReplyDeleteGetting excited for the auction!! :D
Hayley,
ReplyDeleteThanks for stopping by! I'm not going to D.C. this year. They had so many people respond and they wanted people from different districts than last year, so I'm out... It's okay though, a couple of friends that I told about ACR got picked to go. So I'm happy for them! I may save money to go with the Arthritis Foundation next year. I've never gone with them because of the cost, but we'll see.
The auction items are lining up. I think it's going to be great!! I can't wait until the Gathering next year too. It should be a really good time.
MO