How to Act Around People With Chronic Illness

Hey all! I thought I would open myself up to questions. So many times people wonder and stare but think it is inappropriate to ask questions. NOT AT ALL. I wish more people asked me questions. Even if you don't know anything or you offend me. Asking questions means you are trying to understand...and I love it.
A lot us feel uncomfortable around things we don't know or understand. I remember being young and not knowing how to express my emotions around people that were having a tough time. And worst of all trying not to feel awkward when they make jokes about their situation. I am sure I have made people feel like this all the time. For the record it's not on purpose. I guess we just want to relate you as much as you do. I often make jokes about my illness to lighten the mood. To make people feel comfortable in knowing that I am ok with it. It usually doesn't work but all my friends and family feel pretty comfortable calling me a sickie or an old body. I guess that's one of our ways of coping. I thought I would put together a list of dos and don'ts around people with a chronic illness or any illness. Don't worry, if you've made a mistake it just means your trying. We won't hold it against you!

1. Ask Questions
Seriously, I mean it. I would rather have people ask me questions than stare at me. I appreciate when strangers and people I know are happy to walk up to me and ask what is going on. Sometimes I need their help. People often ask me if it is wrong to ask what my illness is. I never mind telling someone what illness I suffer with and how I deal with it. It lets me know you care.  Just be respectful and kind about it. Maybe even offer up something of yourself.

2. We're Not Complaining 
Sometimes when I am at events I hate talking to people for this reason. People ask me how I am doing and automatically they think I am being negative. A party pooper. This is not the case. If you ask me about my life I am going to tell you. This is what I have to talk about. I don't have the same stuff in my life as you do. Just because I tell you that I am having surgery or feeling pain doesn't mean I am being a downer or that I am even sad about it. I am trying to connect with you. I am trying to bring you into my world and make you feel like you are a part of it. Please don't assume everything is negative. It's not, I promise. Just try to listen and don't be afraid to talk to me about it.

3. Don't be Afraid to Show Emotion
When my neighbor passed away from cancer a couple of years ago I had no idea how to act around them. I hate saying that because they are my closest friends. I didn't want to add to their pain and I didn't want to bring up something that was painful for them. I think we all feel this when something sad happens. It's hard to know if it is ok for you to feel sad about it when other people are suffering more. The best times and the hardest times in my life were when people expressed their sadness for me. That sounds weird but it made me feel not alone. It made me feel incredibly loved. I always encourage my husband and my family to show their emotion. This is never going to be just my battle. It's a battle everyone faces with me and IT IS HARD. It is hard to be the person that has to watch their loved one suffer. Never be afraid to show us that. We love to know that we are not alone. Even more so don't be afraid to be happy with us. To laugh with us. To joke with us and to lighten the mood. We probably need it. We need you to be you.

4. Tell us About Your Life
People don't realize that even though our lives aren't perfect we want to hear about yours. I don't care if you are going through something you think is less than my trial. I want to hear about. Trust me I can sympathize with any struggle and pain. Don't be afraid to tell me your joys even though you may think mine are less. You probably are one of my joys. Your happiness makes me happy. I would never root for you to fail or to be unhappy. I want to connect with your life just as much as you want to connect with mine.

5. Stop making us feel lazy or unimportant
This is the only that actually gets on my nerves. However sometimes people don't even realize that they are doing it. There is a big difference between being lazy and needing to rest. Don't assume that I do nothing but sit on the couch. I am a wife, a house keeper for my husband and my mom and I exercise everyday.I teach around 20 students piano and voice and I make all the meals, do the shopping and the laundry. ha ha and I blog while I am "resting". When there are times I can't do that much I don't need to feel lazy. The well being of myself and those who love me depends on me. If I am doing bad and need to take time off it's because I don't want to be down for very long or complicate my situation further. My family understands this pretty well as they have to remind me to sit down all the time. Most people with chronic illness beat themselves up mainly because we feel useless or unimportant or lazy. I hate knowing that when I fail at something because of my body then others pick up the slack. Just be careful what you say. It's not our choice to not go to school and not be able to work as much. Our body decided that for us and it's hard to give up those dreams.

6. Just Listen and Be Our Friend
This one is so important. I think almost everyone I have ever met went through a "we wan't to cure you" stage. It's pretty funny actually. I think I have tried everything under the sun because people so badly want to help but they don't know how. Heck I even went through this stage until I accepted and realized that I didn't need to be fixed or cured to be happy. When I started dating my husband he did the same thing. I think it's because people see you suffer and they want to fix it for you. They want to see you happy and healthy. A big thing to understand is that I am happy and healthy for me. I am happy with the life I have. I have doctors that tune up my body and make it work for me. My life may not be a normal life to you but it is normal for me and I love it. I know it sounds crazy but it's true. If you have an idea with how to help with pain ect. go ahead and tell us. If I haven't tried it I probably will. Most of all just be our friend. If I need help, which I will, I will ask you. We want you to just listen, understand and not fix. We just want your company and your love. It's really that simple.

I hope these don't sound to harsh. I promise that we have all made these mistakes. Usually it's just because you are trying and we so appreciate that! I will be checking here and social media for questions to answer in my next post. The skies the limit. Feel free to ask about my illness or life, about dealing with those with chronic illness and really anything. Just please be respectful! I hope these help!

Lead Kindly Light

Many of you probably don't know a lot about me. I have a love and passion for music. I have played piano since I was young and taken voice lessons almost my whole life. I teach piano and voice to kids and adults and I love it. I was a vocal performance major at the University of Utah but have had to pull out because of my health. I hope and pray one day I can finish my degree. I love music theory...in fact, teaching theory in college would be one of my dream jobs. I sing classical music mostly from operas. I can sing in lots of languages and I love the music I sing. The music is old but so beautiful.
Lately I have been getting so frustrated with social media. With the election and all the other things going on in our nation I felt like all I was reading was hate. On Friday morning I was up looking at Facebook and was getting frustrated with my husband. I realized that social media in that moment was just making me feel hate and feel judgement for myself and others. I decided to take a little break and read my scriptures. Try to focus on things that are more important.
I know politics are important and standing up for what you believe. I guess I am sick of picking sides against my fellow humans. I want to choose our side. I want to choose the right side. I want to choose God's side. Not politics side. Not a side that includes hating and judging others.
I felt impressed to find a song that I could post on social media. normally I really hate singing on camera and I am not the type to post. I was going through hymns though and the simple melody and words of this song spoke to me. My mom heard me singing it and asked me to sing it in her relief society (something that happens a lot). I recorded it while practicing Sunday morning. It isn't perfect but it is my testimony. We need to look for the light and be guided by it. We need to be on the Lord's side and trust Him even when things seem scary. Even when social media and the news tells us it's not. I hope you enjoy! Click the link...hopefully next time I will get better at recording.
Lead Kindly Light

                                               

P.s. if you have a song you would like me to sing or arrange I would love to know. I make arrangements for my students and I would love to share some easy arrangements for teachers and students.

Pumpkin Crumb Muffins

I guess I am still in a fall mood because I am still craving pumpkin. Every since surgery I haven't had many snacks to eat. I spend my time making cookies, cake, muffins and breads. I found this recipe on sallysbakingaddiction and decided to make it gluten and dairy free...and I have to say it turned out pretty delicious. I ate one right away and my husband had three after he got home. I hope you enjoy! They are semi healthy but are basically covered in sugar...but hey you got eat something sweet sometime.

Pumpkin Crumb Muffins with Maple Glaze

Yield: 15 muffins   Bake time: 30 minutes

Ingredients:

·         1/2 cup (120ml) coconut or vegetable oil

·         1/2 cup (100g) granulated sugar

·         1/2 cup (100g) packed light or dark brown sugar

·         1 and 1/2 cups pumpkin puree

·         2 large eggs, at room temperature

·         1/4 cup (60ml) non-dairy milk, at room temperature²

·         1 and 3/4 cups (220g) all-purpose gluten free flour

·         1 teaspoon baking soda

·         2 teaspoons ground cinnamon

·         1 teaspoon pumpkin pie spice¹

·         1/2 teaspoon salt

·          

Crumb Topping

3/4 cup (94g) all-purpose gluten free flour

·         1/4 cup (50g) granulated sugar

·         1/4 cup (50g) packed light or dark brown sugar

·         1 teaspoon pumpkin pie spice¹

·         6 Tablespoons (86g) unsalted vegan butter or margarine, softened

Get Ingredients

Maple Icing (optional)

·         1 and 1/2 cups (180g) confectioners' sugar

·         2 Tablespoons (30ml) pure maple syrup

·         2 Tablespoons (30ml) non-dairy milk²

Directions:

1.      Preheat oven to 425°F (218°C). Spray a 12-count muffin pan with nonstick spray or line with cupcake liners. This recipe makes 15 muffins, so prepare a second muffin pan in the same manner. Set aside.

2.      Make the muffins: In a large bowl, whisk the oil, granulated sugar, brown sugar, pumpkin puree, eggs and milk together until combined. Add in the flour, baking soda, cinnamon, pumpkin pie spice, and salt. Mix everything together gently just until combined and no flour pockets remain.

3.      Spoon the batter into liners, filling them almost full.

4.      Make the crumb topping: Whisk the flour, granulated sugar, brown sugar, and pumpkin pie spice together until combined. Stir in the melted butter with a pastry blender or two knives until crumbs form. Do not over mix. Spoon crumbs evenly on top of the batter and gently press them down into the batter so they're snug.

5.  Bake for 5 minutes at 425 then, keeping the muffins in the oven, reduce the oven temperature              to 350°F (177°C). Bake for an additional 16-17 minutes or until a toothpick inserted in the center        comes out clean. The total time these muffins take in the oven is about 21-22 minutes, give or              take. Allow the muffins to cool for 10 minutes in the muffin pan as you make the icing.

6.      Make the icing: Whisk all of the icing ingredients together until combined and smooth. Drizzle over muffins and serve warm.