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Showing posts from September, 2011

Sjogren's and Disability

I have been reading a lot of posts of the Sjogren's Syndrome Foundation Facebook page lately about disability for this disorder. People seem to have a lot of questions and comments not only about the process itself of obtaining disability, but also about the journey which is at best, extremely stressful. Having gone through the arduous process myself, I thought it might be helpful to blog about my experience in the hope that someone may find the information useful or at the very least, know that they are not alone in their struggles and frustration with getting through this system.




My journey with disability began in 2008 when I was put on short term disability through my former employer. After a period of time (I believe it was ninety days), it converted to long term disability which was a benefit I had elected through my employer, thank god. What that meant was that a private disability company, contracted through my employer, paid me sixty percent of my previous year's gro…

Love Notes

He admits when he thinks he is wrong.

He forgives me when I am wrong.

He has made me realize that my sarcasm can hurt and that I need to use it a little more judiciously.

He gets up in the middle of the night to put in a relaxing movie and rub my joints when I can't sleep from the pain.

He has taught me that age is just a number and that you are never told old to find your one true love, whether it be when you are 39 or even at 53.

He knows that words can hurt and therefore never resorts to name calling in an argument or at any other time.

He rarely raises his voice, especially since he knows it freaks me out.

He understands the value of honesty.

He is not only a good definition of the word "father" but exemplifies what it means to be a "dad".

He encourages my dreams.

He loves and appreciates my body no matter what size it is but yet supports me in my quest to lose weight and become healthier.

He doesn't like hospitals but he sits there and holds my hand.

He understan…

Writing From the Heart

This is the link to a guest post that I wrote for the WOW! Women On Writing Blog (Friday Speak Out series) published on September 16, 2011.

 It is entitled "Writing From the Heart".




WOW! Women On Writing Blog: Friday Speak Out!: Writing From the Heart, Guest Post by Christine Molloy

Patient Voices: Sjogren's Syndrome

Good Morning!

During my morning internet cruise, I stumbled upon this excellent piece done by The New York Times.

You can find it here: Patient Voices: Sjogren's Syndrome



It is a video piece of five Sjogren's Syndrome patients briefly (about two minutes) describing their journey with this difficult disease. It is not too often that I dedicate entire blog entries to something that someone else published, but I found this too compelling to not share. The stories are honest and informative by these well spoken patients. I was especially touched by the story of the Coca-Cola executive who finds that she HAS to work in order to deal with her illness.




Enjoy!



























































































































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Silver Linings

When life takes the wind out of your sails, it is to test you at the oars. ~Robert Brault



I woke up.
I realized that I wasn't in agonizing pain.
And that I had slept more than three or so hours in one night.
I felt so blessed.



Life has been quite the struggle lately since I got back from vacation three weeks ago. It started with a nasty autoimmune flare up (worse one in probably over a year) within twenty-four hours of returning home and got more complicated when I ended up in the emergency room with painful ovarian cysts, one of which had ruptured. Add in a very uncooperative and inattentive gynecologist, side effects from pain medications and steroids, as well as some serious hormonal changes from the cysts and well, you get the picture. Not pretty.



Not pretty. That is life sometimes, right?



I was also becoming frustrated because September was here. The beginning of my favorite time of year. So many things I wanted to accomplish and enjoy that were being put on hold. The Big E (hug…

Second Chances

I used to hate blueberries.
Really hate them.
Now I love them.



Yes, I realize that may not sound all that profound but it is for me. There were only two fruits in the world I didn't like until this past summer, raspberries and blueberries (still not a huge fan of the raspberry). I absolutely love fruit salad and it so happened that my boyfriend's sister-in-law makes a fruit salad to die for. The first time I had it was at her home several months ago. I sat there and looked at this delicious creation thinking about how much effort it would be to pick out the blueberries. Then I got to thinking about why I hated blueberries. I think I tried one when I was younger either as a small child or teen. But I wasn't sure. So I had this great dislike for anything blueberry but really was not sure if it was even related to the taste.




I did eat the blueberries in that salad because I figured the taste of the other fruit would mask it and I was right. Then I started adding them to these …

Safe Haven

What good fellowship we once enjoyed as we walked together to the house of God. ~ Psalm 55:14

There is a safe haven for me in this world. Besides my home. Today, September 11, 2011, I am even more aware and more appreciative of having a refuge from the world. A world that is oftentimes unjust and unkind. It is a building, simple in structure and design, yet filled with people of all types. It is not an invincible building; it is still susceptible to the evil people in this world and the weapons they may use. But the people in the building, they are filled with love. It is the love that makes it my refuge.

I love walking into my church and today was no exception. We have spent our summer worship services in our small chapel which is a comforting place in itself, but going back into the "big house" each September signifies people returning from summer vacations and the start of a new season for us. People come together again to celebrate a new Sunday school year. It is a  tim…

I See Healthy People

"He who has health has hope; and he who has hope has everything." ~ Arabic Proverb







A big realization hit me hard a few days ago.

Ready?

Here it is...



I am envious of healthy people.


Not an easy thing to admit, even for someone like myself who is self-aware and pretty open about their faults. It's honest though. And now I feel guilty for even feeling that way. Despite seventy-three blog entries over the past year and a half that I have been blogging, I have never written about envy, jealousy or anything related to the topic. There is a reason for that. Envy is a desire for some advantage or quality that another person has. I don't typically think of myself as an envious person. I usually spend more time on making the best of what I have and that doesn't leave much room for wanting something that another person has.




Lately though I look at people I know (always people I know because I would never want to assume that someone is without health problems unless I know…

The Help

"Wasn't that the point of the book? For women to realize, We are just two people. Not that much separates us. Not nearly as much as I'd thought." ~  Kathryn Stockett (The Help)

"All my life I'd been told what to believe about politics, coloreds, being a girl. But with Constantine's thumb pressed in my hand, I realized I actually had a choice in what I could believe." ~  Kathryn Stockett (The Help)




One must be living under a rock these days if they have not heard about Kathyrn Stockett's blockbuster debut novel entitled The Help. It was recently released as a movie and appears to be a hit at the box office thus far. I am not one to usually devote an entire blog entry to a book or film, but it is one of those stories that just stays with you and hence why I feel compelled to discuss it,;especially since I read the whole 451 pages in a whopping three days. Per usual, I felt that the book was better than the movie.




The story (without giving too much…

Venus

Big news of the week: Venus Williams has Sjogren's Syndrome. Here is a news segment where she discusses her recent diagnosis: Venus Williams Opens Up On Illness.



The thirty-one year old professional tennis star broke the news on August 31st during the U.S. Open. I have to say, I don't think that I could have been more surprised. Maybe because I am still reeling a bit from my own diagnosis less than a month ago (finally!!) Or maybe because Venus Williams is an athlete and has the incredible body of a well-trained one. Perhaps the thing that is throwing me off the most since Venus made her announcement is just seeing "Sjogren's" all over the media. The word that makes people look at me with that confused look on their face when I tell them my diagnosis, is now all over the New York Times, ABC, and ESPN. It is quite surreal.





Not that having Sjogren's in the news is a bad thing by any means. I have to admit, one of the first reactions I had when hearing the news o…