Gaining Weight with Scleroderma

Q: My doctor wants me to gain weight but Ensure and Boost give me diarrhea. How else can I add calories?

A: Gaining weight can be difficult for patients, especially if supplements like Ensure and Boost cause digestive
banana.pngupset. These supplements contain sugars that can pull water into the gut, causing loose stools. If Ensure and Boost are not helping you gain weight because of these side effects, adding in a few snacks per day can help. Weight gain can result from eating an additional 500 calories a day. You can reach this calorie goal by planning 2-3 snacks throughout the day.

 

Snacks containing fat will provide more calories than carbohydrate oravoprotein snacks. Foods high in unsaturated fats, such as avocados or nuts, are great high-calorie healthy options. Although carbohydrates and protein-containing snacks do not have as many calories, they are still good options to include with a high-fat snack.

Incorporate snacks throughout your day by:

  • Packing snacks for when you’re on-the-go
  • Prep snacks at home in the morning so you’re organized for that day
  • Try to schedule when you will fit in your snacks so you don’t forget about them
  • Designate a section of your fridge or pantry for snacks

Here are some high-calorie snack ideas:

Sweet Salty/Savory
Small banana w/ 2 tbsp almond butter 1 oz cheese with crackers
1 cup yogurt w/ ½ cup berries and ½ oz nuts ½ cup egg salad on 1 slice toast
1 small apple w/ handful of almonds ½ cup trail mix
1 cup berries w/ almond or nut granola ½ cup guacamole w/ tortilla chips or veggies
1 slice toast with 2 tbsp SunButter 2 slices avocado wrapped in 2oz deli turkey  
½ PB&J sandwich ½ cup cottage cheese w/ ¼ avocado chopped
1 waffle w/ 1 tbsp nut butter and berries Rice cake with 2 tbsp almond butter

 

 

 

 

SOURCES:

Caruso, Emily. (2015, May 28). 5 Tasty Toast Recipes to Try. Hayati Magazine. Retrieved from http://hayatimagazine.com/living/food/5-tasty-toast-recipes-to-try/  
(2014, May 31). Evening snack on rye bread with cottage cheese and avocado. [Web log]. Retrieved from http://www.eatmorevegetarian.com/evening-snack-on-rye-bread-with-cottage-cheese-and-avocado/

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Preparing for a Doctor Appointment

Patients that have been diagnosed with scleroderma often have many questions regarding how to prepare for their doctor appointments. Common questions include: how to have multiple physicians talk to each other and how to have your physician pay attention to concerns and not be in such a rush. Here are tips for your next appointment.

  1. Prepare for your appointment. What do you hope to achieve and what do you need to know? Thinking about these things ahead of time can help you get the most out of it.
  2. Make sure you write down your symptoms as they occur so you don’t forget to tell your doctor everything that’s going on with your body. Consider keeping a journal.
  3. Your first appointment with the doctor may be very long to obtain an extensive health history. However, other appointments may be much shorter. Be aware of this time constraint. If you need more time, schedule extra time with the receptionist.
  4. Unless you are required to fast, don’t be afraid to bring snacks. You never know exactly how long the appointment will be.
  5. It may be helpful to write down your list of questions, ordered by priority, to hand to your doctor at the beginning of the appointment. That way, your concerns are listed and each will be addressed.
  6. Bring a friend or relative with you so the appointment is not as overwhelming. They can help remember what the doctor said as well as be an advocate for you.
  7. Don’t forget to mention all current medications, alternative therapies, and vitamins you’re taking as they could be contraindicated.
  8. You should be able to trust your doctor, but you are your best advocate and should seek a second opinion if you feel it’s needed. If you aren’t your own best advocate, who is?
  9. Bring a calendar with you to plan for your next appointment. Do not hesitate to call your doctor if symptoms worsen or if you have questions before the next appointment.
  10. Treat yourself after your appointment! Many of us are busy taking care of family, friends, work and other responsibilities. Use these days as a reminder to do something for yourself, even if it’s as simple as stopping for a coffee.

REMEMBER: This is YOUR appointment and you are allowed to ask questions, challenge what is said and be your own advocate. If you have multiple physicians, ask how they are able to work together and what can be done to strengthen your team of doctors.

A helpful acronym to use as you prepare for your next appointment: DOCTOR

Document all of your questions to give to your doctor

Over prepare for your appointment-what do you wish to achieve?

Call your doctor if you have any questions or worsening symptoms

Take a friend or relative with you

Overbook-schedule extra time with your doctor if you need or want more time

Reward yourself after the appointment

Thriving with Scleroderma

Lisa Helfand shared her personal journey at the Spring 2015 Scleroderma Patient Education Conference, with a presentation titled “Thriving with Scleroderma.” In case you missed it, the inspirational video is posted below.

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Highlights include:

  • Her long process of a diagnosis. Lisa’s been a scleroderma patient for 30 years. Initially, her scleroderma went untreated for two years and was characterized as warts.
  • Instead of living her life she was told she needed to devote her life to the disease.
  • Dealing with daily pain and the active decision to not dwell on it.
  • You don’t need to be positive all the time. Allow yourself a day to be sad, but take the next day head on.
  • Compassion and advice for anyone living with a chronic illness, particularly scleroderma.

Lisa is not only thriving with scleroderma herself, but wants to inspire others to do the same. In addition to public speaking, she writes a blog, wrote a book and started a campaign called “Face Off for Scleroderma” after she posted a photo to Facebook and it was denied. She encourages others to participate by posting photos sans makeup.

To connect with Lisa and read more of her inspirational posts visit her blog.

Additional tips on thriving with scleroderma:

  • Meditation: Allow yourself to develop a routine to organize your thoughts. Whether it’s yoga, writing a story, or doing breathing exercises, it’s important to do something for yourself.
  • Highs and lows (roses and thorns): This is always a fun interactive game to play around the dinner table or whenever you’re together. Even if you aren’t having the best day, this activity allows you to focus on the great things that happen every day. Believe me, you can always find at least one.
  • Don’t accept depression: There is a strong correlation between attitude and quality of living. If you’re struggling with depression please talk to your doctor, a psychiatrist, or another trusted individual. It’s important to keep your routine as normal as possible after a diagnosis because you and your family feed off each other and need to reciprocate support.
  • Be patient: Find the right doctor for you. It’s important to find a team of doctors that communicate and make you feel comfortable. A diagnosis like scleroderma will not be an easy road and so it’s valuable to have a team that understands not only your disease, but you as well. The Scleroderma Foundation can help provide physician referrals.
  • Support System: Recognize the people in your life that mean the most to you. Everyone has moments of weakness and it’s important to have a strong support system behind you to lift you up when needed.

As Lisa says, “You have three options: give up, give in, or give it all you’ve got!”

 

Source: http://www.niams.nih.gov/Health_Info/Scleroderma/scleroderma_ff.asp