"In order to write about life, first you must live it." ~ Ernest Hemingway

Year: 2012 (Page 1 of 8)

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.

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

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

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.

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.

Choir.
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

« Older posts