Love

Hey All,
I know it has been awhile but I can't keep from writing tonight. I feel like I want to cry and scream and make people understand. Why is there so much hate in the world. Why are we all looking for problems with people who aren't like us? I feel so burdened when I scroll through facebook and find news of racism and war. I hate that those I love have to live in this world. I hate that my children will face an even more uphill battle than I do.

All of these things makes me question why? I ask this quite a bit since it just seems like life isn't fair. I see people living in war zones and kids fighting cancer. I see so much terror and it makes me want to scream out. I wish the world were kinder, were more fair to those who are deserving.
I have to remember that there are also many beautiful things in life. Mainly my family and friends. I think they make everything sweeter and worth it. I have been dealing with kidney stones the last month and I have relied so much on my family. My husband has been dealing with my teary phone calls and doctor appointments. I am so grateful I have someone to go through the tough stuff with. My parents and in laws have brought me things to help with the pain. I am lucky to have such present parents but I am also very lucky to have married into parents that are there whenever I need them. My brother in law even came and gave me a blessing on the day my pain was worst and spent the day watching movies with me while I slept through the pain. My sister came and made me dinner even after a long day at work. My other sister sent me videos of her and her kids to cheer me up. My brother who is a doctor was nice enough to listen to my questions and my cousins and friends listened to me as  I cried and supported me with their words.

I am so lucky to be loved in this world. Honestly life would be pointless if love didn't exist. I feel especially grateful for the people I choose to call family. My family has all different kinds of people and personalities. None of us are the same, and thank heavens we aren't. We butt heads sometimes but we stick up for one another. They make my world so much brighter and beautiful. I think family is the one most important reason we choose to fight when all seems lost. It is so hard to look around and not just want to give up but when I see pictures of my family I want to dig my heels in a little deeper. I hope we can all spread more love. The world needs it. Love is the only cure for hatred. Hope you are holding your loved ones a little tighter tonight. I know I am.

Stitch Fix Fix

Have any of you tried stitch fix? Cause literally it's amazing! I was excited to try it because who doesn't want a box of personalized clothing sent to you every month. I signed up kind of on a whim in the middle of the night. I can't always sleep so sometimes I am impulsive at night...example, I ate a box of crackers at one in the morning. Usually I regret things I try in the middle of the night but this time I am so glad I signed up.

When you go on you fill out a survey on style and fit that you prefer. They show you pictures of clothes and you tell them your opinion. It's pretty cool because it is so personalized. Once you sign up you just have to wait for your shipment. It's nice because you can specify price range and how often you want shipments.

They send you 5 items every time. I got 2 shirts, a pair of pants, a vest and a pair of shoes. Whatever you want you keep and whatever you don't want you send back. I figure that if I buy around 2 items of clothing/ect. every couple of months then this is the perfect way to do it. I don't have to shop but I can specify what I want. Plus the surprise factor is very enticing. You tell them what you like and they send you a box of stuff you will most likely love.
Try it, I promise you will love it! Plus if you don't want to spend much just order less. You only pay for what you decide to keep. If you don't want to buy too much then specify more time between shipments and a lower price range. Seriously try it. I promise you will thank me!

Check out the link!
https://www.stitchfix.com

Clinic Visit

Last week I had my clinic visit with Dr. Bateman. I love the clinic! It took me about two years to get in and months of Dr. Bateman reading my files before they figured out my diagnoses. I am very grateful to them.

They are located at Salt Lake Regional Hospital. They used to be on the west side but now the have moved their clinic. Inside the clinic they also have a research department where sometimes I get tested. They always need regular people to test so if you want to make $50 for a blood draw then head on over. 

When I go in I talk to the receptionist Debbie. She is really nice. Basically everyone there knows me by name, which is awesome. Everyone is kind and understands better than most people how tough my life can be. Debbie checks me in and usually I sit in their "special chair" and read magazines. I know it's stupid but I love People magazine. 

      

I get taken back pretty quick by one of the nurses. I used to always see Kim(the awesome nurse) but now I have a new nurse who is also awesome. The nurses at the clinic are the best! They are so sympathetic. I don't get that everywhere I go. Sometimes since my disease and symptoms are abnormal I don't always get understanding from the nurses. Trisha has been my nurse as of late and she is wonderful. She is usually the person I call if I am having any problems. She is also the person that calls to check up on me and make sure I am no dead. Once she takes me back she takes my blood pressure and goes through my medications, ect. 

 Trisha brings me to Dr. B as soon as she is ready for me. Before I go to clinic I fill out an intake form. I rate my pain, sleep, headaches,ect. I also tell them things I want to discuss with Dr. B. Usually my appointment is about an hour. We go through all the things I wan't to discuss. It usually involves things I need to do with other doctors. She always shows me research and things I need to study. She types everything up so I can remember what we talked about and what I need to do. I often have to go get testing done afterward. She always checks up on any medications I need. She even prescribes me IV fluids for when I am really sick. 

The clinic helps me manage my disease. They help me know what medications I need and how to keep my body running. For example: every time I stand up my body fails to account for gravity and my blood pressure drops. In the past it caused me to pass out and have seizures to try to get the blood back up to my head. The clinic has helped me find ways to keep my blood pressure up. I take medication but I also wear tight compression clothes to help keep the blood flow going up. When things are really bad I go get IV's to help and also drink like a gallon of Gatorade everyday. 

Without the clinic nothing would be managed. My life would be a lot harder. Another great thing about the clinic is information. I get educated on my disease and so does my family. My sister had a hard time understanding what was going on with me but then she came to the clinic and now is a regular visitor. She even got blood drawn to help with the research. The clinic is trying to spread awareness about these types of disorders. They help my doctors understand what is happening. 

Basically I love them and feel so indebted to them. All of the people working there are doing it to help people. Trust me, I am sure they could make a lot more money doing something else but they are determined to help. They do help! They make a huge difference in my life and many others.

One thing you can't miss when you go is all the turtles. When I first went they explained their mascot to my mom and me. The turtle stands for "slow and steady wins the race". My life my not be normal but if I do take it one step at a time then I can make it. If I can learn to just walk and take my time then I can finish the race. I love this motto. Most people try to convince me to push it, to not let my disease win and to try and live a normal life. It can't work this way. I have to take time to work with my body, to rest, to figure out how to best operate. I may not be running any marathons but if I do this I can survive and thrive. 

How Am I Gonna Be An Optimist About This?

This week has lead to a lot of contemplation. I had my clinic appointment which I will be posting about. I just feel the need to share my thoughts about something else today. I have recently been listening to a playlist on amazon that I made called "happy". They are mostly just songs that lift me up and give me some pep and energy for the day. One of the songs I have is "Pompeii" by Bastille. I love it! They actually wrote it for the movie "Pompeii" but it didn't end up being in it. If you have seen the movie you probably didn't love it. It is mediocre but I love the message. Basically it is the story of a guy and a girl that fall in love while the volcano is erupting. The movie ends with them kissing while being engulfed in lava. The song definitely made me really think about my life and every time I hear it I can help but question myself. Here are some of the lyrics...

I love this! How often is it that we focus on the disaster. I mean if a volcano erupted near me I think it would be all I could look at, but these guys end their life embracing and loving. We need to close our eyes. We need to focus on what is important. We need to realize that there are things that never changed. That we have done this before and have conquered it. 

I have spent the week throwing up my guts every night. I got a really bad cold that has basically has caused a lot of problems with my throat. I am pretty miserable. This is usually how things go for me. Probably how things go for you. So how am I gonna to be an optimist about this? 

What if we did close our eyes? What if we forgot about the hard for a minute and look to see what is left. If close my eyes I can see so many things that haven't changed. I have a family that loves and supports me. I have a husband that is kind and that is a partner in every sense of the word. I have friends and neighbors and cousins. I HAVE SO MUCH. So much that is over looked because I am to busy noticing that my walls are falling down. 

So how do we be an optimist? It's not like it will change the fact that things are hard, that we will die, that our life is changing? Being an optimist isn't about pretending nothing is wrong or having things automatically get better. It is about seeing what is left when we take away the hard stuff. About seeing that we have so much besides the ruins of our life. And that so much comes from the ruins.

Close your eyes. See all the things that never change, even when things are hard. You will always be loved and love others. The good you've done, the changes you brought to the world will never be taken away. NEVER EVER FORGET THAT! Choose to see the good. Choose to believe in a better day tomorrow. Not because hard things change but because you have changed. Because you believe in hope. Be that person that loves even when things are hard. And live your moments like they are your last and most precious. Be an optimist, choose to smile in the pain. 

Ode to Nathan

Dear Readers,

I need you to know something...MY HUSBAND IS LITERALLY THE GREATEST! I know your spouse is probably wonderful but mine is the best.

I thought for Valentines day I would write our love story. I don't think anyone knows the full version of how lucky I am to have found him.

We really met in high school but had classes together all through middle school. I didn't know anything about him until we ended up in same choir our senior year. We were friends mostly because he had a crush on my friend and I would always talk to them about each other. I had a couple boys I liked at the time including him. I didn't think he was an option considering I was his go to wing women. I started dating a guy in the middle of senior year. Before we were "official" he went out of town and I hung out with Nate. We built a snowman in my yard and had a snowball fight. It was pretty magical and he wanted to kiss me but didn't. Ha ha this story would be very different if he had. 

   

I kept dating the other guy and life went on. My boyfriend went on his mission and I waited for him. meanwhile Nathan went on a mission to Russia. My missionary got home and things didn't work out. It was a really rough time as I was in the middle of so many health problems. I noticed Nathan from time to time on facebook and thought he was cute. I wanted to go to his homecoming but I was sick...ha ha he still holds that over me. About a month later I was sitting in singles ward and noticed he was there. Lo and behold he came up to me after the meeting to say hi and catch up. He got my number so we could hang out and talk.

I was actually super surprised when he called like three days later to come over. Ha ha I was wearing my pajamas and I still had braces (something I was a little embarrassed about but what are you going to do?). He came and we talked for hours. He told me all about his mission and I told him all about the things I had been through with my illness. 

We became pretty fast friends. I invited him to lots of stuff and we occasionally would go on those awkward friend dates. Ha ha Nathan has never been that assertive. I started to like him and I felt like he liked me. One night I was so sick of the not knowing that I just strait up told him "Hey I like you, if you like me then cool but if not it's no big deal, I just thought you should know." He told me that he liked me too but he was still deciding. Yep my dear sweet husband actually said that. But for some reason I wasn't worried. I just felt peace about it. 

We went a week without talking until he texted me while I was boating. We started spending more and more time together and I knew so quickly that he was the one. Ha ha I told him I loved him and he said he thought he loved me. Every step of the way he was nervous but I felt so sure.

We started to have really real conversations. He told me about things he struggled with and I told him about the effects of my illness. One night after we had been dating about a month I felt that I needed to warn him. I told him that my illness was a lot of work and heartbreak and tough times. I said if he wanted an out I wouldn't be mad. I told him if I was too much of a burden that he could go. He looked and me and just said something along the lines of "I'm good."

Right before we got engaged I had a tachycardia attack and was rushed to the E.R. He met us there after I texted him. My heart was going so fast and they had me hooked up to every cord and tube. Poor Nathan had never seen anything like it. They decided to chemically stop my heart so it would reset. They did it twice and it was pretty intense. Nathan was standing in the corner and the poor guy passed out. Thank heavens my brother was there to help him out. But he stood back up and stayed till the end. 

That's Nathan right there. Every step of the way he was loyal and stalwart. In the time we dated we found out about a problem in my brain and the possibility of having to have brain surgery. We also went through many nights at home having seizures or vomiting. Nathan would often have to carry me to the bathroom. We missed many date nights and I had to break the news of every thing that wouldn't be a part of our future. Nathan didn't care if marrying me took options out of his future. He always said we would make it work and if we didn't we could still be happy.

Our relationship is strong because we are acutely aware that neither of us is perfect. We both have downfalls and baggage. I was so very scared to give Nathan my baggage. In fact I bawled the day of our wedding because I didn't know how I could ever share my pain with him. I loved him so much. I thought about all the times that Nathan felt unlovable. That he didn't deserve me. And the Lord pushed me forward and made me love him even more. Made me love that we could carry each other to the end and when we fall we can lay and hold each other awhile.

Nathan has the most pure love. It is immovable and constant. I never feel bad about the baggage I bring to the table. Love is supposed to be understanding and kind. It shouldn't be swayed at times of trial and grief. Love should be happy and sad and "I'll sit with you awhile"

To my sweetheart Nathan:

I love you. I wish there was a stronger word to use. I love that you cry with me and laugh with me and are always putting on a show for me. I love that you are so weird. I am so beyond grateful for your willingness to keep our family safe and under a roof. I am grateful that I get to see your face after surgery. That when the pain gets bad I have you to distract me. I love that you love me so much. I am so grateful that I am precious to you because you are so so precious to me. Thank you for never stopping. For not getting discouraged. For loving who I am and not caring about anything else. You make me feel like I have the best life of all. I am forever indebted to my Father in Heaven because I have you. I love you so much! Happy Valentines Day!

Valentine's Day Favorites

I usually don't love Valentine's day...It seems like a holiday that discriminates against single people. This year I am married and we aren't planning much but I am excited to have a special day with my hubby. Whether you are single or in a relationship you deserve a treat. These clothes are super cute. I love wearing pink on Valentine's so get ready to see lots of it.
I love things that are flowey and feminine. Plus who doesn't love feeling like Audrey Hepburn with a cute hair do and classy clothes. P.s. check out the shoes and socks...LOVE!

Bugle Joy Skirt in Pink Blossoms

Shopping for shoes is my favorite. Especially online because they usually are exactly what I am expecting. This pair of pink shoes are adorable...Seriously who wouldn't wear these? They're Oxfords and adorable. 

Inspiring Excursion Oxford Flat in Blush

My favorite thing about Modcloth is there little nick knacks. Seriously they are so unique. When you go to the website make sure to check out the Valentine's day gifts.  I love giving cute little cards as a way to say I love you. These are some of my favorites...p.s. they are under $10.

           

You+Me=Love

       

                                                       

             Love and Crust Valentine Set

This is a fill in the blank book. They are so cute and fun. Then you can have a handwritten record of the both of you together. I also love the pizza box. Don't forget to read the slices...they are pretty funny. I hope you check these out. They are definitely worth your time. Please have a happy Valentine's day. Buy yourself something nice, get your nails done, let your hair down. Valentine's isn't just about loving others it's also about loving yourself! 

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.