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.
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