Wednesday, December 26, 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 writing is the one of the things in this world that I need to do.

He is so good like that; paying attention to what is going on with me and supporting me. I used to worry that because of my illness, he gets the short end of the stick, having to be the strong one more often than not. We have only been together a little over two years and we have endured our share of challenges, in regards to life, my health and, as all couples do, our relationship. Usually though when some type of challenge faces one of us, the other person is in a good enough place to be a strong support. But then what do you do when:

One of you gets so sick that you are hospitalized for five days. And more testing and uncertainty follows.

One of you is having a lot of stress at work.

Your dog gets sick enough to require four vet visits in one week and multiple tests.

One of your cars breaks down.

One of you has been hurt by someone you love and trusted.

One of you is faced with the possibility of another autoimmune illness.

One of you has a sister who undergoes life changing surgery.

One of you is told that you have a growth on your gallbladder that has a remote possibility of being malignant and you have to make a decision about whether it is worth the risk of surgery.

Christmas is fast approaching.

One of you is told that your mother is dying.

And all of this happens within the time frame of one month.

So what do you do? What do you do as a couple with so little time under your belt when both of you are stressed beyond limits that you think you can handle?

They say that love conquers all but I am not sure I agree with that anymore. Rather, I think love, friendship, determination, faith, compassion, selflessness, and most of all communication conquers all. Because once you are committed to someone, experiencing crisis is no longer a solo event. You have to be able to not only support your partner in their struggles, but deal with your own feelings as well. It is easy to get caught up in your own challenge of just getting yourself through the day, but it's no longer just "your" day. The day belongs to both of you.

I cannot speak for my fiance but for myself, in the past month, if I was trying to be there as a support for him, I rose to the occasion. Almost to an extreme. If I knew he was stressed out and then asked me how I was doing, I would sometimes downplay something going on with me. I think there is a time and place for that, depending on the seriousness of what which each person is going through, but I am here to say that for the most part, it doesn't work well. Because he knows me so well, he then worries more. Being a martyr for your partner's sake is not the answer. Open and honest communication is.

We are by no means on the other side of the current challenges that we face and we may not always get it right, but I can say what has worked well:

*We ask each other "how are you today?" It seems like such a basic question but if you are in a relationship, think about the last time you actually asked your partner that question.

*By sitting down together, we have learned to prioritize the most immediate needs of the week, day, and even hour. It may be him traveling to Boston Christmas morning to spend time with his mother, knowing that I physically can not make the trip that day. It could be me doing some Christmas shopping for him so that he is freed up to deal with other things.

*We make sure we connect as frequently as possible and make each other the priority right now. I will actually consciously have to stop whatever I am doing sometimes and make sure that I have not been so wrapped up in my own problems and stress that I have not made myself emotionally available. On the flip side, I will also ask him if he needs time alone.

* Make sure we laugh together every single day, at least once.

* Depend on other people. Historically, both of us are terrible at this and the events of the past month have taught us that not only is it okay to ask for help, but that you also need to know who you can depend on for help. Especially when you need a listening ear. One human being cannot be all things to another.

Finally, and maybe most importantly, we hang onto each other as tight as we can.

Sunday, December 2, 2012

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 health issue for that matter, Anything I have learned I have learned on my own. I was not sure how much new information I would learn yesterday but I figured that any tips I could get would be helpful and I was not disappointed. I am going to share some of the information provided during the lecture that I either found helpful or that I think you may find helpful.

The speaker was Tara Mardigan, MS, MPH, RD. She is a nutritionist at Lown Cardiovascular Center in Brookline, MA, Team Nutritionist for the Boston Red Sox, and most importantly, she serves on the Medical and Scientific Board of the Sjogren's Syndrome Foundation.

Sjogren's Nutrition

Pain: Avoid spicy, salty, acidic foods and extreme hot or cold foods. Limit carbonated beverages. Avoid crunchy, dry, chewy, and crisp foods.
GERD: Avoid large, fatty meals, and alcohol. Sit upright after meals. Eat mindfully.
Low body weight: Supplement with high protein shakes or soft bars to add calories. Plan ahead if traveling.
Constipation: Fluids, warm water, prune juice, or warm prunes, gradual introduction of fiber-rich foods, probiotic supplements, cacao nibs, psyllium husk powder, Benefiber, Smooth Move tea, bowel regimen per MD, restorative yoga poses, stretches, small walks, stress management.
Fatigue: Adjust typical meal pattern, choose nutrient-dense foods, limit refined carbohydrates, address sleep issues, add manageable exercise.
Dryness: Keep foods moist with sauces, gravies, prune puree, applesauce, honey, agave nectar, dressings, oils, or yogurt. use a food processor to help chop or liquefy foods. Try tender, slow cooked meats (crockpot). Thin foods with broth, water, or non-acidic juices. Try mini meals with frequent liquids to aid swallowing.
Gluten: Gluten is a protein found in certain grains and can damage the villi lining the small intestine which prevents the body from absorbing nutrients. People with autoimmune diseases such as Sjogren's have a higher incidence of celiac disease and even just a sensitivity to gluten. It may be worthwhile to try eliminating gluten from the diet to see if it alleviates some of the Sjogren's symptoms.
Eating right: A typical meal plate should be divided so that it contains fifty percent fruits/vegetables, twenty-five percent carbohydrates, and twenty-five percent lean proteins. Fish, poultry, nuts and beans are the best choice for protein. Choose healthy fats. Limit saturated fats and avoid trans fats. Choose a fiber filled diet. Choose water as your drink of choice and avoid sugary drinks. Increase calcium intake. Milk isn't the only, or even the best source. Calcium can also be found in non-dairy sources such as almond and soy sources, beans, and greens. Decrease sodium intake. Eat less processed foods.
Omega 3: Sources include fatty fish, flaxseed, hemp, algae, and supplements and may play an important role in the inflammatory response. Discuss specific dose with MD or RD but aim for 1000-3000 mg of EPA/DHA per day. Look for at least 500 mg combined of EPA/DHA per pill or spoonful. Always take fish oil with a meal and keep in the refrigerator to minimize side effects. Caution and check with MD before taking Omega 3 supplements when taking blood thinner such as Coumadin/warfarin.
Vitamin D: Sources include sun, diet, and supplements. Ask MD to check your 25-hydroxyvitamin D, also known as 25(OH)D to determine your vitamin D status. 30ng per milliliter or greater indicates a sufficient level and anything below this indicates a deficiency. 2000IU/day of Vitamin D is the daily dose goal. Deficiency may be linked to neuropathy and lymphoma.
I think this information was the highlight of what was presented yesterday. There was quite a few things I found helpful. For example, I am a strong believer in the benefits of Omega 3's and have been long before I was ever diagnosed with Sjogren's. There has been research done showing the positive effects of larger doses of Omega 3's for depression and with so many of us dealing with Sjogren's related mood issues, whether it is situation or medication related, Omega 3's can be a viable option to traditional prescription medication for depression. Omega 3's are also obviously known for their anti-inflammatory properties and the dosing guidelines that Ms. Mardigan provided are a good tool.
I have also been very recently diagnosed with an esophageal motility disorder related to Sjogren's and am having difficulty with at least half of the foods that I used to eat. One of my biggest concerns is regarding the nutritional supplement I was given during my hospitalization which was Ensure. I bought some when I came home and also purchased another one called Boost as I had lost a significant amount of weight in a short amount of time. However when I read the bottles, I was shocked to see how much sugar was in these "nutritional" supplements. Sugar is known to contribute to inflammation and there is also dairy in these products and I follow a dairy-free diet. I have spent a lot of time and energy cutting back refined sugars in my diet so I am not eager to get it all back in my nutritional supplement!
I spoke to Ms. Mardigan about this and she told me about a gluten, dairy, and soy-free nutritional supplement product called Vega, available at Whole Foods and online, that I can use instead that does not have the sugar and will provide me with just as much nutritional support, without all the junk. I am hoping to pick some up tomorrow and try it so I will get back to you all on that.
Yesterday's nutrition lecture did not focus on or even discuss any one particular "diet' for Sjogren's, but rather discussed different nutritional strategies one can utilize in an attempt to help manage the symptoms related to this very complicated illness. I would be interested in knowing what nutritional strategies (especially any of you who have been following a Paleo lifestyle as I may be heading in that direction) you have found helpful in managing Sjogren's syndrome.
Photo Courtesy of Google Images

Friday, November 30, 2012

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 months. Since I was a nurse, they sent me home from the emergency room with a prescription as I could do the injections myself which by the way, is easier said than done.

My primary care doctor was suspicious about my blood clot because even though I took the birth control pill, I was a non-smoker. He ran a series of blood tests to check for genetic blood clotting disorders and sure enough, one of them came back positive. I have a genetic clotting disorder called Factor V Leiden and I am heterozygous which means that I only have one copy of the gene. My mother subsequently got tested for Factor V Leiden and was found to be positive as well.

Because I am heterozygous (which is less serious) and was on birth control at the time which probably caused the clot, I remained on Coumadin for only three months. I came off the pill and was banned from hormonal birth control for life. I thought that was the end of it. For those of you who are unfamiliar with Coumadin, it is a difficult drug to be on. It requires frequent lab draws while they stabilize your dose and then usually you have monthly blood draws after that. Coumadin interacts with a lot of other prescription and non-prescription medications including anti-inflammatory medications such as Motrin and Advil. Also because there is such a low threshold for the therapeutic blood level, called the INR, you need to be vigilant about signs of having too high of a level, which can lead to bleeding. There are dietary issues that play a big role in taking Coumadin as levels of Vitamin K, which is found in foods such as green leafy vegetables, can dramatically throw levels off.

Fast forward to February 2012. I am receiving high doses of IV steroids for what was thought to possibly be neurological complications from Sjogren's syndrome but ended up being a mild case of another autoimmune illness called Guillain-Barre. For weeks, I had been experiencing severe leg pain and weakness which for a lot of the time, kept me in bed or on the couch. It never occurred to me or to my doctors that maybe I should go on blood thinners preventatively due to my Factor V history and current immobility.

Twenty-four hours after the third IV dose, I am sent to the emergency room with heart palpitations, thought to be related to the steroids, so that an EKG can be done. Labs are drawn and one of the labs, the d-dimer test, comes back suspicious and because of my Factor V Leiden history, a CT scan of my lungs is performed. Next thing I know I am admitted and told that two small blood clots have been found in my lungs and I am put back on blood thinner injections once again. Another trip to the hematologist and I am now put on Coumadin for at least a year and most likely for the rest of my life as I have now had two clotting events. I am also tested for other autoimmune clotting disorders which all come back negative. The hematologist admits that he is taking a very conservative approach.

Months go by and I learn more about these two blood clots that were found in my lungs from several different doctors. I find out that they were very small and located in peripheral veins and likely were an incidental finding; meaning that if I had not come into the ER that day, these clots never would have been detected, caused me any problems and would have resolved on their own. However it did not seem that NOT being on Coumadin was even an option according to my doctors. At least that was the impression that I got.

It took us approximately five months to get my INR to a therapeutic level and I was becoming frustrated with being on Coumadin because things were much different with my overall health than my first time around with the medication in 2004. I now had a very difficult to treat autoimmune disorder. I had to stop taking Motrin with helped significantly with my joint and other autoimmune related pain. I had to significantly decrease my intake of Omega 3 fish oils which I not only took for inflammation but was my treatment of choice to help manage mood swings related to taking prednisone. I constantly had to be cautious about my diet because I had started eating healthier and green leafy vegetables were a part of that diet. I had to be strict about making sure I ate the same amount of greens on a consistent basis. I was also restricted on trying alternative medication and herbs to treat my autoimmune disorder because of their potential interaction with Coumadin. To me, it seemed ridiculous that I was taking potent medications like prednisone and narcotics without having the opportunity to try an alternative treatment plan because of Coumadin.

Now I know some of you may be sitting back and thinking that well, you have to do what you have to do, right? Better than the risk dying, right? Because that's what can happen if one of these blood clots gets out of control. But that's the thing. These two events were not random events. They could, in my mind, most likely have been prevented. So I started doing a lot of research because at this point, it was starting to become a quality of life issue. It's easy for a doctor to say: stay on Coumadin for the rest of your life. But at forty-one years old, the rest of your life, is a long life. It is a risk. What I found in my research was that having two blood clotting events is not always a definite for going on lifelong Coumadin therapy. There are people out there who chose not to. Instead, there is the option to stay off Coumadin and then if they find themselves in a high risk situation such as a long plane ride, a hospitalization, or any other situation where they are at high risk to develop a clot, they go on Lovenox injections preventatively.

 I am willing to do that.

I decided to call my hematologist and discuss this with him since my next appointment wasn't until April and coincidentally I was admitted to the hospital the same day he called me back and could not speak with him. He told my fiance to have me call him back that Friday. I was having gastrointestinal issue related to Sjogren's and because I had not been eating, my INR was too high. My Coumadin was held for the next four days and at one point, the doctors even considered holding off on doing an endoscopy, a procedure which I very much needed, because of the elevated blood level. I was pretty much done with the whole Coumadin saga at this point.

The day before I was discharged from the hospital, which happened to be Friday, my blood levels stabilized and the hospital doctor wanted to start me back on Coumadin. I also remembered that this was the day that the hematologist was going to be available to talk to me. I called him. I have to admit, I was pretty nervous. I was certain that I was going to get lectured for even considering wanting to come off this medication and as strong as I was in my convictions about this being the right decision for me at this time, I wanted to have a rational and well thought out conversation with the hematologist about the issue.

And I did.

I told him my perspective and he told me his. It ended up that they were really not that different at all. Typically when someone with a genetic clotting disorder has two separate clotting events, the recommendation is that they go on Coumadin for life. But that is a recommendation. It doesn't mean that all people do it. As far as I know, it also doesn't account for anyone with heterozygous Factor V Leiden who had one incident on birth control, one incident with Guillain-Barre, and who also has a difficult to manage autoimmune disorder that could really benefit from other treatment that interacts with Coumadin. Because let's be honest: that's all just unheard of. Nobody gets all of those disorders in one lifetime. Only I do.

He did acknowledge that he was coming from a very conservative treatment standpoint and as a patient, I have to respect that. As a doctor, he seemed to respect where I was coming from. I even said to him "Do you think I am insane for wanting to do this?" to which his reply was " Absolutely not." It was not a conversation in which the doctor told the patient what to do.  I made it clear that my wanting to come off Coumadin was not an impulsive decision but rather a very well thought out one. At this point I had been taking Coumadin for nine months since my last clotting event.

The decision was made that I would stay off the Coumadin and follow up with him at my April appointment. I also agreed that I would be proactive about blood clot prevention. This means that if I am in a high risk situation, I will go on short term Lovenox injections. I will take care to wear special antiembolic stockings if I am not moving around as much as usual and I will not stay sitting or in bed for more than an hour or two without getting up and walking around; except for typical sleeping time or naps. It is going to require effort and diligence because nobody else is going to do it for me, as evidenced by what happened last February. I cannot rely on a pill to keep my blood from clotting anymore.

Now this is all well and good. Fact is, I may get another blood clot anyways. I am well aware of that and to be honest, it scares me a bit right now. But it scares me more to be on Coumadin and recently  be told several times that my levels were high, unpredictable and then have to worry about bleeding. It's a risk no matter which way I go and right now, I feel that the risk I am taking by staying off the Coumadin, coupled with the significant increase in the quality of life it will give me, is worth it.

This whole experience has opened my eyes to a few things. As a patient, I have choices. Medicine is not black or white. There is a lot of grey. A doctor can make recommendations, even strong ones, but at the end of the day, I am the one who has to live with the consequences of the health care decisions that I make. It doesn't mean I will always make the right decisions but who is to say that our doctors do either? They are human too. They have the education and expertise to give us the information, but we are the ones that then have to ultimately live with the consequences of the medical treatment that we decide on. Our bodies. Our lives.

Photo: Courtesy of Google Images

Wednesday, November 7, 2012

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 line at the A&P supermarket with their food stamps; trying to do whatever it took to keep their heads above water.

Despite the fact that both my brother and I are divorced, we both learned a lot from my parents during those early years and from the years since then. I can't really speak for him, but they have taught me that marriage is a true partnership. They have demonstrated that with this partnership and a strong work ethic, it is possible to make a better life for yourself and your family. I am proud of how far they have come since those early years.

There have also been a lot of scary moments. A car accident and open heart surgery for my dad. Ovarian cancer and breast cancer for my mom. Moments that caused chaos and rattled the very foundation of our family. Moments that also strengthened their love as a couple.

Until recently, my mom has always been the talker and the emotional one in the partnership when it came to my brother and I, while my dad tends to be more reserved with his feelings. Most of the news and information in the family tends to go through my mother. I think that is true for a lot of families in that generation (they are in their sixties) but yet, when I sit here and think of the expressions of love I have verbally heard expressed in reference to each other, it is my father's voice that echoes the strongest with me.

The year was 1997. After I had been in remission from a cancer diagnosis, my fiance at the time had suddenly broken off our engagement and relationship. Since we lived in what was originally his house, I went to live with my parents until I could figure out what I was going to do. He had told me that he had realized he had never really loved me. I was emotionally devastated. I remember floating in my parent's backyard pool telling my dad this and how maybe my ex was just confused and would eventually come to his senses. I know, I know. I was being foolish. My father just looked me straight in the eye and said "Chris, when you love someone, you don't say things like that. I have never ever told your mother I do not love her.You don't do that."

Simple yet profound words.

It has been interesting to watch my parent's marriage evolve over the years since my brother and I have left the house and especially since they have retired. It seems like in a way, they have renewed the romantic part of their marriage. My mother refers to my dad as "her love" on Facebook and my dad was proudly telling me yesterday on the phone about the large bouquet of flowers he thought to order for my mother to celebrate their anniversary today. All I can say is, "who stole my parents??"

Maybe it is because there is no longer the chaos and stress of working full-time jobs and raising children. Perhaps it is because they now have more time to appreciate each other rather than trying to figure out how to just get through the day and pay the bills. Whatever it is, it makes me happy. It makes me happy to see that despite the odds and despite the challenges this world presents to us every day, true love can win out and last a lifetime.

Thank you mom and dad.

Monday, November 5, 2012

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 at such a young age; almost two years ago.

His wife, my friend.

Of course I have thought about my friend in these past two years, but it has been a long time since I have mourned her. I had gone through my grieving process and I had chosen to remember her with fond memories and joy. However last week made me stop and think about how very unfair life can be sometimes. It didn't seem right that he couldn't have her there with him by his side. What a loss this world experienced when she left us. The grief felt palpable once again.

Once I came home from the second day of doctor's visits, the house was quiet when the grief hit me and I decided that maybe the best way to deal with it would be to go on my computer and browse through some photos and videos of my friend. Remember her with laughter. Like the photos she took of me eating soggy grilled asparagus. It looked like I was eating worms. Don't ask! I eventually ended up scanning YouTube for videos as our church posts its services and choir performances videos on there.

A tough place for me to be lately. Actually, I haven't been there as much.

My friend was in the choir and she was the one responsible for getting me involved in our church choir. Singing for God has been one of my steadfast passions until recently. I say recently because not being able to sing for the past few months, due to struggles with my autoimmune illness, has been a loss for me. Sometimes the difficulty has been with my lungs, fatigue, the dryness of my vocal cords, or issues with reflux affecting my throat. The fact that this has happened to other Sjogren's patients has just discouraged me all the more. A lot of the time, I truly cannot physically sing and sometimes it is just energy that I cannot afford to spend that particular day or week. Although I have to be honest, I do wonder if occasionally I am just so exhausted and discouraged, that it is just easier to sit it out. Don't tell anyone though because most of the time, people don't understand that part of having a chronic illness unless they have experienced it themselves.

As I was looking through these church videos, I came across a YouTube video of my fiance and I singing the song "Mary Did You Know?" at our church Christmas cantata last year. A cantata dedicated to my friend's memory. A song that has become significant to me because I had to overcome respiratory issues to be able to pull off that performance. It was a good performance. And I was grief stricken again. Because when I heard my voice on that video, I felt like physically, I wasn't in the same place as last year. Actually I know I am not. My illness has taken more from me physically this year, including at times, the quality of my voice. Is that selfish? Maybe. Because let's face it, compared to my friend not being here, it's not as significant. But it is still my loss.

Fast forward to Friday. I am sitting at a Women of Faith conference in Hartford, CT. An incredible event that you will probably hear more about at a later date. I am thoroughly enjoying listening to a Christian comedian. A man named Mark Lowry.

Mark Lowry.
Why does that name sound familiar?

I decide to stop torturing myself trying to place the name because this man is so funny, I don't want to miss a word that he says. He's that good.

What I didn't realize, until he opens his mouth to do so, is that this man can also sing. What a voice on him! What a talent to be able to make people laugh and to be able to sing like that.

What I also didn't realize? That this man write songs.

How do I know this? Because at the end of his performance, he sang a song that he wrote. A song that over thirty recording artists have performed since he wrote it.

The song?
"Mary Did You Know?"

Seriously? Come on.

Now you can say what you will about coincidence and such but here are the facts. I had tickets for this conference for months, but did not know that the man who wrote the lyrics to this song was going to be there. I had not watched the video of that Christmas cantata in at least eight or so months. I also did not know about my friend's surgery until last week.

So I don't believe this was all coincidence. I am typically not a person who makes radical proclamations and I certainly do not typically write about them publicly online; although maybe I will more often now.

I believe this was God speaking to me.
I believe this was my friend speaking to me.

I believe they were telling me that as long as I am not harming myself, to keep singing as best as I can, when I can, but to push a little harder.

I believe they were telling me to stop comparing myself to other people. To get back to my speech therapy exercises, to do some research online, to stop reading about what other Sjogren's patients can and cannot do for a while.

And finally, I believe they were telling me to believe a little less in my illness and a little more in myself.

Photo Courtesy of Google Images

Sunday, October 21, 2012

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 experienced in my illness since its onset four years ago.

This wasn't just an opportunity to attend a writer's conference though. I also had a ten minute, one on one meeting scheduled with a literary agent at this event yesterday. It was an opportunity I had known about back in December of last year when I started writing my book Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjogren's Syndrome. I made sure that I signed up for the conference the day registration opened up in order to ensure one of those coveted agent meeting slots. I spent weeks learning how to write a good query letter. I researched how to do a book proposal in case one was required for my particular book. While sitting in doctor's waiting rooms over the past few weeks, I would be emailing back and forth with other story contributors for the book in order to get the manuscript complete.

Now I had never been to one of these meeting before, but the impression I got from the person coordinating the meetings and from doing a bit of research online, it seemed like the purpose was to review your query letter, discuss your book and have the opportunity to ask questions. I was not expecting to walk out of that meeting with a literary agent. Not because I don't have confidence in this book. I do. But because I knew that it was my first time at the rodeo so to speak. This was more of an opportunity to introduce my work and if I was really lucky, maybe spark the agent's interest. I was expecting to get some valuable feedback about my book and learn something to help me figure out the next step in getting this very important book to the next level.

By the grace of God, my symptoms started to settle down forty-eight hours before the conference. The day before the conference I was by no means back to the physical state I was in a month ago, but I was definitely able to get myself to Mount Holyoke College, which is twenty minutes from my home. I thought I could manage going eight hours without pain medication and then hopefully be able to focus, function, and act intelligently for eight full hours; without a nap or rest period. I would probably require at least several days to recover from the experience. My medical needs had increased over the past two weeks and I meticulously planned my medications, eye drops, inhalers, and water needs (due to extreme dryness from Sjogren's) around the conference schedule. My writing bag was packed, accompanied by my medical supplements. I had researched my agent. I knew what I was going to say.

I was ready.
I was excited.
Game on.

Thirteen hours before I am to leave my house, it is seven o'clock in the evening and the phone rings. I see the caller ID and the name of the person coordinating the agent meetings flashes at me from the phone, daring for me to answer. I knew. I just knew. I get through the conversation, barely.

The agent I was supposed to meet with was sick and all of his meetings had been cancelled.

Some people would stop reading here and say OK, so what? It was just a ten minute meeting. Send the query letter to another agent. Or maybe he will read the letters at another time and then get in touch with you when he is feeling better. But in those moments following the motion of hanging up the phone, all I could feel was profound disappointment. All I could think of were the hours I had spent in bed, while so sick, writing this book. The obstacles I had overcome to even be able to get to this point with the book. The disappointment I felt over not having the experience of meeting with an agent.

And within minutes, the negative thoughts were gone.

He was sick.
I know about sick.
I know about not having control. This was out of my control. What was in my control was how I was going to handle it.

I changed my mindset. This agent, on this day, was obviously not the path for me or this book right now. I decided to keep faith and move forward. I was still able to go to the conference. I was still going to be able to meet and enjoy the company of other authors and learn more about my craft. I was going to have the opportunity to immerse myself in the literary world that I have come to love so much.

And so that is what I did. I met new people. I learned new things.The speakers were tremendous. I was especially touched by the keynote speakers Maria Luisa Arroyo and Ann Hood. Both of their stories touched me in a way that few ever have. Both made me cry. In both of them, I saw what it was like to have the soul of a writer and how a writer can effectively use their life experiences to make a dramatic impact on the lives of others.

I am sitting in the second morning panel session called Going Beyond the Personal in the Personal Memoir. It is 11:53. I know this because a woman comes into the conference room with a clipboard. She announces that she is looking for the following three people who will, due to a variety of reasons, unexpectedly have an agent's meeting after all on that day. They are to go upstairs at noon. I sit there and remind myself that there had to be at least ten plus people who had their original meetings cancelled. It will not be me.

She speaks.
I am name number three.

The chain of events that followed after that felt frantic to me. I am not the most spontaneous person in the world. I did not know which agent I was meeting with and she had not had the opportunity to even read my query letter until I sat down in front of her. I remember telling myself to breathe and relax so I could make the most of the experience.

It was a much bigger experience than I imagined. She thought the query was really good and that a publisher would pick up the book. What? My book? We discussed what the next steps would be. Then she is telling me to submit the query letter to her at the agency with a book proposal. Excuse me? I am the one who came here with a cancelled agent's meeting and now you are requesting a book proposal?

THIS was how it was supposed to unfold.

I don't know what is going to happen. I may submit the proposal and it will be rejected. I may submit it and it will be accepted. What I do know with absolute certainty is that no matter what, my book and I will travel our path together until we have reached our destination; wherever that may be.

Photo Courtesy of Google Images

Sunday, October 7, 2012

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 either say "peace", "peace be with you", "hi, how are you", or whatever else feels appropriate. People rarely stay in their pews and they wander all over the place. It is truly an exchange of peace and good will in a Christian community of people. It is one of my favorite times of the month at my church.

Today I was passing the peace to a family my fiance and I have been spending some time with lately outside of Sunday service. The family consists of a grandmother and her four grandchildren. As I let go of the oldest child's hand after wishing him peace, he said to me, "Chris, what does peace mean?"

Leave it to a ten year old to throw me off balance.
Such a simple, yet profound question.

Of course, this entire passing of the peace at church takes all of about five to ten minutes so I didn't have time, at that moment, to sit down and discuss it with him but I simply said that peace meant calmness. It was really all I could think of as a response at that moment. I am not sure if he understood exactly what my response meant in the midst of of the flurry of peace passing activity, but that is a conversation that we can have more in depth at another time.

It got me to thinking though. Don't we all know what peace is or the meaning of the word peace? I mean seriously, isn't it obvious? If you look in any commonly used dictionary, you will see several different definitions for the word peace. You know what I think though? I think that most of the time, peace means something different for each of us. I think the paths we take to get to that state of peace is also different for each of us.

To that ten year old child, peace may mean having the comfort and security of a grandmother who tucks him in at night and loves him unconditionally. Peace for him may mean knowing who the adults are in his life that he can count on. Maybe it means to him knowing that as he grows older, he has a church community that is a home to him no matter what obstacles life hurls at him.

For me, peace means many things and takes on several different forms. It is a state of mind, of spirit, and of soul. Peace is when my spirit is full or when my mind is calm. The best is when both happen at the same time. A difficult thing for me, or anyone for that matter, to achieve these days. Peace is also when my body, soul and spirit are at peace with whatever havoc may be going on physically with my body at any given moment. A very difficult task to accomplish indeed.

Many people say that peace is being in harmony with other people. To me, that is not always the case because I have come to find that I have no control over other people, how they think about me, and especially what they do. So my peace, or harmony, comes from realizing this and also in realizing that the only person I have any control over is myself. Therefore when I think and act in a way that is true to myself, I am at peace.

I am at peace when I am able to pull myself out of the stress and anxiety of the misfortunes that life may throw at me and am instead able to appreciate what are considered the small things in life such as the feeling of my dog's breathing as she sleeps quietly with her head on my chest. Or maybe the serenity of being in my house on a fall afternoon when the sun streams through the large glass windows and the loudest sound I hear is the birds playing outside on the deck.

I find peace with myself when I am able to not be preoccupied with the "what ifs" and the" I can't" thoughts that often invade my brain. When I am able to put the negative thoughts away and instead replace them with positive thoughts and the thought that the only limitations I have are those that I put upon myself.

Peace with myself is when I accept myself as I am right now, right at this moment.

Just as importantly, peace is something that we can give to someone else. It can be simple and cost us nothing. When we extend ourselves and our love to another human being in an act of giving or generosity, we give peace. It may be in the form of a meal or a phone call. A listening ear or our time. In some way, when we ease someone else's burden, we give another person some peace of mind.

Giving peace to another person may come in the form of not judging them and accepting them for who they are in their moment. No questions. No criticisms. Just love. So that they may feel free to feel less stress and anxiety; to be at peace with where they are in their life journey.

So maybe my answer to my ten year old friend was accurate after all.

Peace IS calmness.

Of mind.
Of body.
Of soul.
Of spirit.

Where do you find YOUR peace?

Photo: Courtesy of Chuck Myers (

Friday, September 21, 2012

Medicare, Blue Cross/Blue Shield, and Me

Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story...

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 worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.

The short version is this. I switched from my ex-husband's health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex's group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren's specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.

Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.

I contacted Congressman's John Olver's office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying "you no longer have Part B, I don't know why, and don't know what to do about it." I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman's Olver's office who started to follow through on the issue for me.

Meanwhile I was dealing with an exacerbation of my Sjogren's syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won't get straightened out as by this point I didn't understand what the issue was or what was going to happen next.

I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.

After several straight days of dealing with this, yesterday I heard back from the Congressman's office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.

So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn't going to be that simple.

So I hung up and just cried. I asked God why can't the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don't they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.

And then the phone rang. I hesitated to pick it up because well, it's always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn't in the Medicare Part B system yet so that couldn't be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.

I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.

She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.

This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.

Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.

Photo Courtesy of Google Images

Monday, September 10, 2012

What I Have Come To Understand

In the two and a half years I have been writing this blog, I don't think I have ever written a post about a doctor's appointment with my rheumatologist. The appointments tend to be pretty significant since the rheumatologist treats the Sjogren's syndrome. I am sure that I have mentioned events that have happened at certain appointments, but I think that has been the extent of it. I think the reason for this is because I don't think people will be interested or that the post may be boring. Today I realized that I may have made a mistake. Sharing information from these appointments with my rheumatologist not only may help someone else, but it also gives other people the opportunity to give me feedback about their experiences with different treatments, side effects, and complications from medications.

I have had more severe symptoms than usual lately with some new ones thrown in for fun. Therefore I have been seeing my rheumatologist, Dr. P, more often than usual. These appointments tend to be  stressful for me compared to those with other doctors. Sjogren's syndrome, like many other autoimmune diseases, often presents with a myriad of symptoms and often it is like trying to fit together the pieces of a puzzle. Is this symptom autoimmune related? Is it a side effect from a medication? There is the unpredictability of not knowing what the next step may be in treating the illness. Then there is also the fact that Dr. P's office is an hour away from home, she is usually running behind (I have attributed this to the fact that she does not rush through her visits), and sometimes there is lab work to be done after the visit. From the time I leave my home to the time I pull back in the driveway, I am looking at a five hour trip. Exhausting.

I have  been more frustrated than usual with her, myself, and the whole Sjogren's situation in general. I had just recovered from the whole Guillain-Barre/blood clots in the lungs fiasco when I began to develop severe, debilitating migraines thought to possibly be autoimmune related. After struggling to find a medication at a dose I could tolerate to manage these migraines, some of my Sjogren's symptoms decided to come out and play; most likely because I had weaned off my steroids. Severe fatigue and joint pain worse than I have had in at least a year were the highlights. In addition to that, I have been having some significant urinary issues that come and go and that has prompted some further testing; the cause thought to possibly be autoimmune or medication related.

What this has meant is that Dr. P and I have been continuously trying to figure out a course of treatment to manage my illness. A course of treatment for an illness that has no cure and really no acceptable or standard form of treatment. If you have diabetes, you change your lifestyle, check your blood sugars, and take insulin. The end result is that most of the time, your illness can be controlled. Not the case with Sjogren's, or many other autoimmune illnesses for that matter.

And there are only so many medications to try. Appointment after appointment Dr. P and I discuss the options and what may come next in regards to medications. She keeps wanting to put me on or increase my dose of prednisone. This gets me pretty worked up to say the least. If you have spent any time reading my blog, you will understand how much I hate prednisone. Here's the thing though: as Dr. P said today, I am between a rock and a hard place and it is a matter of choosing the lesser of all evils. I have already been on many of the other autoimmune medications such as methotrexate, Imuran, Cellcept, and Enbrel. Cellcept did help quite a bit but made me so sick that my previous doctor had no choice but to take me off of it. Enbrel helped a little but not enough to justify the chronic sinus infections it was causing me to have.

As we discussed today, there are some other options to consider such as the medications Arava and Rituximab. But they are not without their risks as well. It is hard to make decisions, I am sure for her as well as for me, about which risks to take. Do we consider Imuran again and take the risk of liver damage and other complications or continue trying the steroids at different doses and see what side effects I can live with and risk long term complications such as diabetes, cataracts, and stroke? As much as I hate the prednisone, there is no doubt, it works for most of my symptoms. The problem is that I need a lot of it and the more I take, the worse the side effects are and the higher the risk of severe long term complications.

So our plan for now is to double up my prednisone dose to 15 mg for a few days and then slowly wean it down to 10 mg rather than the 7.5 mg I am currently on. We did this about two weeks ago when the pain and swelling got bad enough to interfere with my daily functioning and it worked but once I got back to 7.5 mg for a few days, the symptoms started up again. So this time we will only wean down to 10 mg. We agreed that 10 mg is the maximum dose of prednisone that is comfortable for me long term. Well, for Dr. P anyways. 0 mg is the maximum dose I am comfortable with but the reality is that my options are getting fewer and fewer and I cannot risk further Sjogren's complications or live in this state of health.

What I came to understand from my appointment today is that there are no easy answers. Not even easy answers, but any concrete answers.

There is no medication in this world right now that is going to fix me without making me sick in some other way. Maybe someday there will be. But not today.

I am also starting to understand that I don't think my body is ever going to go back to the point it was at before December 2008, which is when Sjogren's started to truly ravage my body.

This does not mean that I still cannot do what I am doing; exercising, eating healthier, reducing stress. I will keep trying to control my symptoms through diet and exercise. I will live a healthy lifestyle. I will meditate. I will work with my doctors and stick with my treatment plan. I will laugh and I will play. But I guess for now at least, I am not going to place any of my hopes on any one medication to be the answer for restoring my body to the state that it was once in. Rather, I will continue to work with the body that God has given me in this moment and in this day to live in the best possible way that I can.

Photo Courtesy of Google Images