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Showing posts from 2012

Hang On As Tight As You Can

"I'll lean on you and you lean on me and we'll be okay." ~ Dave Matthews Band

It is the day after Christmas and I am sitting here thinking of all the blog entries I want to write. My writing has taken a nose dive recently for a variety of reasons and I can always tell when it has been far too long since I have done any writing. Whole sentences and paragraphs start to form in my head in the middle of the night when I am fighting my enemy, the evil insomnia. Or I will be having a conversation with someone and sometimes find my mind wandering to all the thoughts in my head that I want to get written down.

Today is my day to get my mind and spirit back to my passion. To be honest, over the past month or so, I have been so distracted and overwhelmed, that I couldn't even concentrate long enough to put all of those sentences and paragraphs together. But like so many other times, it was my fiance, Chuck, who gently reminded me with one of his Christmas presents, that w…

Christmas Peace

Sixteen days until Christmas. Well, until Christmas Day anyways. Seven more days until my first family Christmas gathering which is taking place earlier than normal this year. Until this morning, my heart has not truly been in the Christmas spirit. I had been trying very hard, but the distractions in my life have kept pulling me away from the spirit of the season. The one that encompasses peace.

 As a child, Christmas was always magical and some of that magic became lost on me an an adult. The reasons varied. I was in a marriage with someone who came to despise the holiday shortly after we married and as the years went by, the likelihood of ever sharing the magic of Christmas with children of my own diminished. However that began to change right around the time I separated from my ex. At that point, I had been going to church on a regular basis for a few years and I had found the true spirit of Christmas. The meaning of it had changed for me as now I had begun to appreciate the hol…

Nutrition For Sjogren's

“Don't eat anything your great-grandmother wouldn't recognize as food.”  ~ Michael Pollan
On December 1st, I had the opportunity to attend the Greater Boston Sjogren's Syndrome Support Group. I have been on several different occasions and typically there is a different topic covered at each meeting and features a guest speaker. They have also had groups where there is an informal round table which provides an opportunity for the attendees and their support person to circulate amongst different break out sessions to discuss a variety of topics related to living with Sjogren's syndrome.

Yesterday's topic was regarding nutrition and Sjogren's syndrome. It is something I was  interested in learning more about because I have done some work in this area myself. I strongly feel that it is an untapped area when it comes to the treatment of this illness. I have never had nutrition or diet discussed with me by any of my doctors in regards to Sjogren's or any other he…

The Great Coumadin Debate

In 2004 I experienced sudden pain in my lower left leg. It was an unusual pain. I didn't remember banging it against anything and I certainly hadn't been active doing any type of exercise or sports recently. For a variety of reasons, depression had been my constant companion and I had been spending a lot of time laying around. That would soon come back to haunt me.

After a few days, the leg pain got worse and I went to see my primary care doctor. He wasn't much of an alarmist but he thought it was worth having an ultrasound done on the "off chance" that I had a blood clot in my leg. To be honest, I thought it was overkill but then my thoughts turned to panic when the radiology department told me I could not leave the hospital yet and then called my doctor. My ultrasound showed that I did indeed have a blood clot and would have to go on injections of a blood thinning medication called Lovenox, followed by the oral blood thinner Coumadin, for a period of three mon…

Making Love Last A Lifetime

Chains do not hold a marriage together. It is threads, hundreds of tiny threads which sew people together through the years. ~Simone Signoret

On November 7, 1970, two people pledged their love and commitment to each other. For better, for worse. For richer, for poorer. In sickness and in health.

My mom and dad.

Today, they celebrate forty-two years of marriage. Forty-two years. Can you imagine? I can't. Maybe because in order to achieve that, my fiance would have to live until he is ninety-seven and I would have to make it until I am eighty-four. Heck, I can't even picture fifty years old at this point!

But those two people, once in their early twenties, have made it that long and I hope and pray that they make it many more years together.

Like most marriages, their marriage has not been perfect. There have been many arguments and conflicts. There were multiple job losses and sleepless nights. The early years brought very difficult financial times, including standing in li…

Reclaiming My Voice

"Music exalts each joy, allays each grief, expels diseases, softens every pain, subdues the rage of poison, and the plague." ~ John Armstrong

Grief is a sneaky invader; creeping up on you when you least expect it sometimes. Maybe it makes its guest appearance after a random conversation or during those still hours when the house is quiet. Sometimes grief is over the loved one we have lost. Sometimes grief comes in the form of losing something that we were once capable of doing.

My invader made a visit last Thursday. I wasn't prepared for it but then again, are we ever really prepared?

I understood the circumstances of why I was feeling particularly sad last Thursday. I had been spending some time last week with a friend of ours at doctor's appointments. He had asked me to be, as a nurse and as a friend, a second set of ears in preparation for a major upcoming surgery he was having this week. A surgery he was going through without his wife, who suddenly passed away …

Another Stumble, Another Step

I love to write.
In case that wasn't obvious.

I had the opportunity yesterday to attend a writer's conference called WriteAngles at Mount Holyoke College in Massachusetts. It was my second time at the conference and I was not disappointed. It is such a high for me to be surrounded by so many writers and readers. I love the energy. I love the opportunity to learn. I love the fact that I get to step outside of the isolation that I sometimes experience as a writer and instead be able to engage with those who share my passion. 

I had a lot of physical challenges facing me going into the conference this year which is partly why I have not been blogging as frequently. My Sjogren's symptoms kicked into high gear a few weeks ago and this resulted in a significant increase in doctor's appointments and major changes in medications; not to mention feeling like hell due to pain, fatigue, and issues with my eyes. It has probably been one of the worst flare ups I have experience…

Never Going Back

For a variety of reasons, mostly to do with my health, I have not had much opportunity to blog lately. However what I am going to post today is hopefully a little inspiration for anyone who thinks that they cannot lose weight. For anyone who thinks that controlling their emotional eating or food addiction is impossible. For anyone who thinks that it is impossible to control their weight or lose weight while taking steroids. For anyone who thinks that it is impossible to exercise when you have  severe arthritis, an autoimmune disorder, or a chronic illness.

The second photo here is of my handsome brother and I and was taken today at a family gathering. The photo made me realize that I had another photo of him and I that I keep meaning to have my fiance print for me as a reminder to hang either on my fridge or to put in my wallet. Maybe I will leave it sitting on my nightstand when I don't want to get up and go to my water aerobics class in the morning. It is a reminder of why I wo…

Peace Be With You

"Peace is not something you wish for, it is something you make, something you are, something you do, and something you give away. ” ~ Robert Fulghum

On the first Sunday of the month, which is Communion Sunday, we pass the peace in my church. This is a common practice in many Christian churches although the way it takes places can differ from church to church and denomination to denomination. When I was growing up in the Catholic church, this was a process in which we would turn to the people to the sides of us, behind us and in front of us and say "peace be with you" and shake their hand. If the person was family, maybe we would hug or kiss them as well.

In my current Protestant church, the passing of the peace is a more gregarious affair. Depending on how familiar we are with the person, we either shake their hand or hug them. There is a lot more hugging, or rather embracing, than hand shaking compared to most other churches; at least ones that I have attended. We ei…

Quieting The Soul

I walked to the mailbox today to retrieve Saturday's mail. A task that I avoided on Saturday because my new rule at the moment is to not retrieve the mail during off hours. That means no trips to the mailbox at times when I cannot call someone and address whatever crisis has plagued my poor innocent mailbox and subsequently my peace of mind. This includes Saturdays and anytime after 4pm. Otherwise the bad news just sits in my head and bothers me until I can take care of it. I was never like this before, but lately there have been so many letters and issues that need my attention and require so many hours of time on the phone that it has been the best plan I could come up with.

Sure enough, my mailbox was plagued today. After learning that my health insurance was reinstated last Thursday by Blue Cross and Blue Shield, I got an official letter in the mailbox this morning stating that I had until November 9th to get the situation with Social Security straightened out and get Blue Cro…

Medicare, Blue Cross/Blue Shield, and Me

Note: This essay was written Thursday September 20,2012

My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?




There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and wor…