The Beauty of the Mountains

There’s something about being in the mountains that makes all my problems seem small and insignificant. I think it’s because they are so big and beautiful; there’s no room for anything else. A couple weeks ago, I got to stay in the Rocky Mountains for a few days with my boyfriend, Steven. We had a lot of fun, and it will always be one of my favorite memories. But for me, it was a little more than just a relaxing vacation.

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I wasn’t planning to write about my experience, but a blogger that I’ve come to love wrote a post that changed my mind. I hope that by sharing this, I will encourage some of you who deal with the same things I do.

I got out to take some photos earlier this week, so you’ll get to see them too! 🙂

Before I write about the trip, I think that I need to explain a few things that have been going on in my life. Most of you know that I was very sick a few months ago, and I had gotten some medical diagnoses that weren’t good.

Here’s the part that you don’t know:

One day, I came across an article about eating disorders and their effects on the body. I curiously went through the list in the article, and I noticed that I had every physical symptom of being severely malnourished. I had a dangerously slow heart rate, thin hair growing everywhere, low body temp, and lots of other unpleasant things. I desperately needed to eat more.

But I was afraid. I was afraid of having pain and nausea and ending up back in the emergency room. I would go to bed hungry because it was easier than dealing with the anxiety around eating and the pain that usually followed.

Starvation causes the body to release endorphins that lower anxiety, so I didn’t know that I was hurting myself. I thought that I must be doing something right because my anxiety had dwindled down to zero. I actually felt better not eating.

After more research, I realized that I was not anywhere near okay, and I started the AIP Protocol for my Celiac Disease as well as making myself eat three meals and three snacks per day. Each meal and snack was a fight with my brain, and many times, I didn’t think my stomach could handle the food. Within the first week, I had gained ten pounds.

After a few more weeks, I was starting to trust my stomach a little more, but my anxiety had returned full force. I was afraid that my stomach would just keep stretching and stretching, and my confidence plummeted. I have never thought much about my looks, but having a disproportionate belly and stick thin arms and legs did start to get to me. It was just in time for me to see Steven after eight months apart. Great.

While he was here, I had terrible thoughts about myself. Even though I knew that he didn’t think anything of my new weird proportions, I felt ugly. I was embarrassed to eat outside of the house because of how big my stomach grew afterwards, but I knew that I had to eat to get better. So I ignored those thoughts!

Later on in the visit, we decided to take a weekend trip to the mountains so that we could have some time to ourselves to talk and catch up. It was beautiful and relaxing. The second day into our trip, though, I had a panic attack-the first in months. I had a twinge in my chest, and my brain blew it out of proportion. I was scared, and I cried a lot. I hated that he had to see me like that, but it meant so much to me that he was there to help me through it. After I had calmed down, we went for a drive, and all I could think was that I was a terrible girlfriend. I didn’t want to be such a mess for the short time we had together.

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The last day arrived too soon, and we headed back home. We were both pretty down because we knew that it was almost time for goodbye again. I spent most of the ride home lost in my own thoughts, and they were still rotten. I was beating myself up about every little thing and thinking about my constantly bloated stomach way too much. I felt gross on the inside and the outside.

As I was looking out the window, my thoughts shifted to the creator of the mountains – a much better subject. I thought that if the mountains were this beautiful and amazing, He must be even more so.

And then something in my mind clicked, and I realized that the same creator that made those beautiful mountains made me too. 

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He looked down on all the beauty in the world and decided that it needed one of me. 

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Why would I say such hateful things about something created by the sculptor of the mountains?

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This really came at the perfect time, and it brought me to tears (happy ones). I grabbed Steven’s hand and held it tight. I was so thankful for him, and I was so thankful for God.

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I will always have bad days with my anxiety and thoughts, but knowing these things and reminding myself of them always pushes them farther away.

This post is a little scary for me, but I really wanted to share it after reading the post I linked above. I don’t think that I talk enough about my experiences and struggles, and I feel like my posts usually paint a much prettier picture of my life and thoughts than reality.

Anyway, thank you for reading and sticking with me through this strange time. Having everyone’s support means the world to me. 🙂

I hope you all have a fantastic week!

 

 

 

 

 

 

 

 

AIP Month One

Hey everyone! I’m back. I took a bit of a break to spend time with Steven, so I didn’t get around to making blog posts.

We hadn’t seen each other for eight months, so I was pretty excited.  We got to make a few trips to Denver, and we got to stay at the YMCA for a couple nights. It was beautiful, and we had tons of fun! I’m so thankful for the new health and the ability to travel a little bit again.

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We saw so many of these in the few days that we were in the mountains!

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Waiting for dinner time and watching Friends.

I didn’t really change anything food-wise while he was here, but I did try out a couple new snacks. I didn’t want to risk feeling gross while he was visiting, so I ate lots of safe foods. I have been able to start eating strawberries, honeydew, cantaloupe, pineapple, coconut, and spaghetti squash, though!

So far, it has been one month on AIP. I have gained over 12 pounds, and I have experienced a huge reduction in symptoms! The nausea is gone, and I haven’t skipped a meal in weeks. I have a ton more energy, and I am able to do so much more! I am starting to get bored with my food, though, so I am considering reintroducing some things.

While on AIP, I have also had to follow a low fodmap diet for IBS, which eliminates some fruits and vegetables. I think I may try reintroducing those things first before reintroducing some of the non-AIP foods. I haven’t decided yet!

Anyway… I thought I would share the two snacks that I have come to love! They are both gluten-free, vegan, and AIP compliant.

The first is plantain chips! I was so happy to find these at Natural Grocers. I can eat an entire bag in one sitting, and I know it’s not the healthiest. But I let myself do it because I need the extra weight! Ha.

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The other snack is sweet potato chips. Most brands use a vegetable or seed oil to make the chips, but Jackson’s Honest uses coconut oil! The coconut oil makes these chips completely AIP compliant, which is amazing. I could eat these all day.

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Overall, it hasn’t been too difficult to stick to AIP, but I think that is mostly due to hardly eating anything to begin with. Transitioning to AIP actually added more foods to my diet than it took away, so it wasn’t too bad for me. I am feeling so much better that I’m pretty hesitant to add in any of the non-AIP foods. I’m going to give myself a month or so more before I add anything back!

I am also planning to test out some probiotics soon, and I hope to add in a few supplements (Calcium, Magnesium, and Vitamin D) as well.

Here are a few unrelated updates:

  1. I got a job writing for a freelance blogging site, sold four articles so far, and got a raise! I really didn’t expect much going into it, but it is fun and gives me something to do. It doesn’t pay much, but it gives me a little spending money here and there.
  2. I have applied for a few jobs around town, and I really am hoping to be chosen for one. I’m not sure how I will feel working, but I really want to try!
  3. I finalized my schedule for the fall, and I will be taking courses in English, Psychology, Science, and Nutrition. I’m REALLY excited for the variety, and I can’t wait for the nutrition course. I’m trying to use this semester to solidify my plan for the rest of my schooling, so I hope to find something that I really enjoy. I have been considering English or Nutrition as a back up plan if I feel like returning to music is not the best idea for me health wise.

I will keep you all posted, and I hope to start making some more interesting foods here soon! I’ve been working on a few new recipes with the expanded diet, so stay tuned. 🙂

 

 

 

 

Week One AIP Report

Hey everyone! I thought it would be fun to document my days starting the autoimmune protocol because I have been searching for other stories and haven’t found many. I hope that by writing about my own experiences on this new diet and lifestyle, I can help others trying to heal as well! I will still be posting recipes as I can come up with them, but I will be posting weekly updates on the protocol as well.

Here are the foods that are eliminated from my diet:

Dairy
Grains
Eggs
Nuts and Seeds
Nightshade Vegetables (Potatoes, Eggplant, Peppers, Etc.)
All Processed Foods
All Sugars/Sweeteners
Legumes
Fruit and Seed Based Spices

Last week, I made the final cuts from my diet-nuts and eggs. However, I also introduced a few new foods, which included honeydew, plantains, and acorn squash. I realized after a couple days that I introduced new things way too quickly because I was feeling so good. And it resulted in a terrible stomach ache. So I’m back to square one this week.

So that we are all on the same page, these are the foods that I am eating on a daily basis:

Bananas
Plantains
Carrots
Sweet Potatoes
Turnips
Parsnips
Acorn Squash
Tilapia
Tuna
Ground Turkey
Gelatin
Fresh Spices/Herbs

Right now, it really isn’t much. I am working to add new foods each week, and I hope the list keeps expanding. All the foods that I will be introducing will be on the autoimmune protocol, and I will not be reintroducing foods off of the protocol until I see a lot of changes.

So far, I have been working quite a bit on exercise, hydration, stress-management, and sleep. I walk everyday, am consistently drinking 6-8 glasses of water a day, meditate/breathe twice a day and do yoga once a day, and I have a consistent sleep schedule. I also have been seeing an acupuncturist for about a month. The new steps this week are to shut off my electronics by 9:30 each night, and I made my bedroom much darker for better sleep!

To adequately track my progress, I thought I would rate my symptoms and log my weight.

Weight: 84 Pounds
BMI: 15.9
Nausea: 8/10
Abdominal Pain: 7/10
Bloating: 8/10
Fatigue: 8/10

Day 1 (April 10th): First full day on the protocol!

I added chicken to my diet today, and it went just fine! I used this day to batch cook all of my protein sources, and I also made huge batches of veggies to freeze. I was able to eat three full meals, and I snacked a lot. The snacking wasn’t the best for my hunger signals, but I can’t help it when I am cooking! I always taste-test everything while I’m making it. I was able to get all of my cooking done for the week, and I also finished a painting I started yesterday. I was able to get all my laundry done, and I felt generally well all day! I do notice an increase in hunger, and a constant craving for sweet potatoes and other carbohydrates. I’m very encouraged by that, although it is very hard for me to distinguish between hungry and full.

These are all the batch cooking photos! 🙂 Sausage, tilapia, and chicken on top, and carrots, parsnips, and plantain crackers on bottom!
Breakfast: 2 Sausage Patties, Sweet Potatoes, Acorn Squash, Coconut Oil
Lunch: Chicken, Leftover Winter Vegetable Soup, Acorn Squash, Coconut Oil

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Dinner: Tilapia, Roasted Mixed Vegetables, Plantain Crackers
Snacks: Tuna, Banana Pudding, Plantain Crackers, Random Veggies from Cooking

Day 2 (April 11th): I realized something today.

This experience will be very much like the refeeding seen in eating disorder recovery. While I did not restrict my eating due to the fear of gaining weight, I did restrict because I was afraid of the pain that would follow. I was consistently eating under my baseline metabolic need, and that must be the cause of some of my new symptoms. Now that I am slowly working my way up to my caloric need, my body will not let me stop thinking about food. Even when I’m full, I have a strong desire to eat more and more. Because I know that I need these calories, I keep eating.

By the end of the day, I look pregnant due to the bloating, and it hasn’t felt the greatest. However, I am not nauseous or in pain, so I am going to stick to eating on a schedule. To keep this post from getting too long, I’ll make a separate post for the weird changes my body is going through with the added calories. 🙂

I didn’t do much today because I am completely exhausted! All I want to do is eat and sleep and repeat.

Breakfast: 2 Sausages, Sweet Potatoes, Acorn Squash, Coconut Oil
Lunch: Chicken, Carrots and Zucchini
Dinner: Tilapia, Roasted Mixed Veggies, Acorn Squash
Snacks: Tuna, Banana, Banana Pudding, Plantain Crackers

Day 3 (April 12th): I went to bed full and woke up hungry!

It’s so nice to be hungry in the mornings again. I honestly forgot what true hunger felt like since I ignored my natural hunger signals for so long. I still can’t trust my body’s hunger/fullness cues, so sticking to a schedule is key. As long as I am not in pain or nauseous, I eat no matter what my stomach is up to. I used to wait for my stomach to growl, but now it hardly ever makes a peep.

I made plantain chips today in the oven. They are not as good as the crackers, but they are just as addicting!

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I also got to meet with a new friend, which really brightened my day. I had so much fun, and it makes me feel so much more human to get out. 🙂

Breakfast: 2 Sausages, Sweet Potatoes, Acorn Squash, Coconut Oil
Lunch: Chicken, Carrots, Zucchini
Dinner: Tilapia, Roasted Veggies, Acorn Squash
Snacks: Tuna, Plantain Chips, Banana

Because I have to stick to small portions of certain veggies for IBS, I have to have a large variety of veggies daily to feel satisfied. That’s why I eat the same 5 meals at the moment; I eat everything on my diet list every day in small amounts. I hope eventually I will build my variety and be able to eat different  meals! But until then, I enjoy every potato, squash, and carrot that I can.

Day 4 (April 13th):

I’m starting to get tired of the same foods day after day, but that doesn’t stop my hunger! I have eaten a ton today. I also ate way too many sweet potatoes at once, so I had a pretty bad stomach ache last night. That’s thanks to my IBS! It’s hard to manage IBS with AIP and trying to gain weight, so you win some you lose some I guess!

I had my brain MRI today as well. I fell asleep in the scanner because I was so tired! It came back completely normal, which is really great. I am so thankful for that news.

Breakfast: 2 Sausages, Sweet Potatoes, Acorn Squash
Lunch: Chicken, Carrots, Zucchini
Dinner: Tilapia, Roast Veggies, Acorn Squash
Snacks: Tuna, Banana, Sweet Potatoes, Plantain Chips, Roast Veggies

Day 5 (April 14th): I tried to make pancakes today, and they were a total flop.

They stuck to the pan so badly that I couldn’t eat them. So I used the rest of the batter to bake a cake type thing, which came out okay! It didn’t look the best, though.

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Breakfast, Lunch and Dinner, Same old things!

Day 6 (April 15th): I added avocado today!

I had small amounts with lunch and dinner, and all is well. I’m very happy about that because I loved avocados before all of this happened! Haha.

I pretty much ate the same foods for breakfast, lunch, and dinner today too. I’m sorry that I’m boring! But it helps to have it all planned out ahead of time.

For dinner, though, I filled my entire plate with food! And guess what…

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I ATE IT ALL! I was so proud of myself. It was hard because I was really worried about how it would feel later, but I did it anyway. And I feel fine! Take that, brain!

Tomorrow is my unplugged/no internet day, so I will not be logging anything! This week was a really good week! I feel so much better, and I can tell that what I have eliminated has helped quite a bit. I have barely any nausea, but I do have a TON of bloating. However, I think this is due to the fact that I am eating way more, and my digestive system is not used to having adequate amounts of calories. I assume it will go away eventually, and it’s not painful. So I am going to keep pressing forward!

That’s all for this week! Next week I will rate my symptoms again and update everyone on the new additions/successes. If you have any questions about the diet or about anything really, ask away! I’d love to talk with you. 🙂

 

 

Plantain Crackers (GF, DF, Paleo, and AIP)

Hello everyone! I am back with a recipe! 😀

I have made big changes these past two weeks, and I am feeling SO much better. First of all, I saw a new neurologist who specializes in dysautonomia. He thoroughly evaluated me, and he was extremely knowledgeable in everything going on in my crazy body. He diagnosed me with migraines, which I wasn’t expecting, and said that as a baby I most likely had cyclic vomiting syndrome. This means that since I was little I have had signs of these sorts of neurologic issues. He confirmed that my knee reflexes are in fact absent, and he is sending me for a brain MRI and some nerve testing soon. He decided that my dysautonomia is most likely caused by something, and he believes that it very well could be autoimmune. Autoimmune conditions run in my family, and I already have one myself, celiac disease. Now the search is on to figure out which autoimmune condition is the problem, which includes more lab work and testing.

Anyway, because I have an autoimmune condition, and because my dysautonomia is most likely tied to a separate condition, I have decided to try the Autoimmune Protocol. The autoimmune protocol is a diet/lifestyle change that is very similar to the paleo diet, but it is much more restrictive. A few days ago, I eliminated all grains, nuts, eggs, seeds, legumes, dairy, nightshade vegetables, and several spices from my diet. I am eating a lot of fish, meat, vegetables, and fruit! Since the elimination, I have felt around 70% better. I am sleeping well, eating well, drinking much more water, and my nausea is almost completely gone. (For comparison, I was only able to eat about 900 calories per day and four cups of water before the changes, and now I am able to eat 1,400 and a full eight cups of water per day.) I don’t feel completely full after eating, and I have normal hunger signals. Each day gets better, and I keep wondering when it will end! I haven’t had this many good days in a row for months. People have even been telling me that my color is returning, and I am so happy! It is a highly restrictive way to eat, but if it helps me this much already, I can’t wait to see where I will be months from now.

Some other good news: I have enrolled in my classes for next fall! I am planning to come back to college, but I will only have four classes. I am just using this next semester to explore some other options that are available to me, and I will only have classes on Tuesdays and Thursdays. I think a schedule like this one will allow me to keep taking care of myself and healing from whatever condition is behind all of this madness. 🙂

And now onto the main part of this post-the recipe! 🙂

I found this recipe here, and I didn’t change much! I just used my own measurements to work with my oven since it’s a bit touchy!

Ratings:

Taste: 10/10
Cost: 10/10
Difficulty: Easy

You will need…

1 Plantain
1/4 Cup Coconut Oil
Sea Salt

First, preheat the oven to 325 degrees.

Melt the coconut oil in the microwave, and blend the plantain and the oil until smooth.

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Spread the mixture onto a sheet of parchment paper. Try to spread it as evenly as possible, otherwise the edges will burn.

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Bake for 10 minutes, then cut into squares and sprinkle with salt.

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Bake for another 35-45 minutes or until crunchy and dark brown.

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That’s it! These are delicious, and I have a hard time stopping myself from eating the entire pan in one sitting. These crackers are a great source of carbohydrates while on the AIP, and they are very customizable. Adding cinnamon would be a great sweet cracker, or you could add savory spices as well. Green plantains are generally more savory, and the yellow or black ones are more sweet. Pair with spices as you wish!

I hope you enjoy these as much as I do. Thanks for reading! 🙂

 

10 Things I’m Thankful for with Celiac Disease

This is going to be a short post! I have had a very busy week, and I didn’t have much time to work on this blog. Stay tuned next week for some fun updates, though! I will hopefully be posting my first recipe since my new diagnoses. I’m very excited!

Anyway…

Next month is Celiac Disease Awareness Month, so I wanted to remind myself this month of the cool things this autoimmune condition has brought me after one year!

  1. I have met some awesome people. It’s so nice to know other people with the same difficulties, and I love the support systems that we have. (Paige, you are awesome.)
  2. It has pushed me to learn to cook. Before I was diagnosed, I didn’t like cooking, and I don’t think I ever would have learned without being limited.IMG_0962
  3. I have a blog now. I had always wanted to blog, but I never felt like I had anything to say that would help people. Now I have lots of things to write and share. And with the newest health concerns, I will have even more to write about!
  4. I eat healthier than ever. I have cut out all processed foods, and I eat all whole foods. I don’t think I would have done that without the need to.IMG_0798
  5. I have no problems losing weight. This is a frustration at the moment, but will be a benefit when I’m older, I’m sure. Ha!
  6. I have tried lots of new things. I’ve been to lots of new restaurants, tried lots of new foods, and made my own recipes. This week, I made fish for myself for the first time, which is something I never would have done a few years ago!
  7. It has strengthened me mentally. It has been really hard at times, and I’ve felt left out at many parties/gatherings. But through the experience, I learned that no one really cares if I have to pack my own food, and my good friends will still include me whether I can eat with them or not.IMG_1281
  8. I know exactly what I am putting into my body at all times. Having to read labels constantly gets annoying, but now I know everything that goes in. I know how many macro and micro nutrients I get each day, which is very helpful at times!
  9. It means so much more to me when others cook. Knowing that they spent so much time making me something safe makes me feel loved and appreciated. I think being cooked for is something I definitely took for granted before I was diagnosed. (Shelby, you are great at this. :))
  10. I’m happier and healthier than I’ve been in a while. Finally knowing what causes my problems has helped me to get rid of most of them. I am always thankful that my daily stomach aches are a thing of the past. (I actually wrote this blog post before my new digestive issues had started, but this is still true! Even though I am struggling now, it is not related to celiac disease, and the diagnosis of celiac disease helped me out tremendously! My stomach aches now are caused by different things, but I am working on those too.)

Thank you for reading! If you can relate, comment or send me an email! I’d love to hear from you. 🙂

It’s Not Easy Being Green

Hey Everyone!

I’ve been getting a lot of questions about my diagnosis/condition/treatment plan, so I thought I would just make one big long post. I hope this will clear some things up for you, and if it makes you think of any more questions for me, please ask!

Here’s a little background info. Last semester, I struggled to get through classes and lectures due to fainting spells, dizziness, heart palpitations, and lots of other lovely symptoms related to my heart. I had numerous doctors visits, but I ended up being able to finish my semester with straight As. This spring, I returned to school much more confident after going through a physical therapy regime, and I thought everything was going great. I had a few weird days with stomach issues, but that’s not unusual for me. As the semester progressed, my stomach started acting up more and more, but I tried to ignore it. One night, I had a ton more pain than usual, and in the morning I woke up to blood. We went to the emergency room, and the next few weeks were full of tests, procedures, appointments, and blood draws. I withdrew from my semester of classes, which was difficult, but it was a huge relief. The doctors found no answers, and we were all confused and stumped. I lost a lot of weight (I’m currently 83 pounds, and I was around 100 before.), and I couldn’t eat much of anything without lots of pain and nausea. I started feeling full within a couple bites of anything, and I had a hard time finishing meals. Most nights I spent on the couch with a heating pad trying to make the pain go away. Which leads us to today! I was finally diagnosed, and I started a new treatment/management plan a month ago. Because of this, I have finally worked my way up to eating about 1000 calories a day. It may not seem like much, but it is SUCH an improvement. I have been slowly gaining a little weight, and I hope to eventually weigh more than I did before diagnosis!

Now that you know the basics, in true Q and A fashion…

Here we go!

Q: What do you have? What were you diagnosed with?

A: In August of 2016, I was diagnosed with Ehler’s Danlos Syndrome-Hypermobility Type, and in October of 2016, I was diagnosed with Postural Orthostatic Tachycardia Syndrome. Just recently, I was diagnosed with a motility disorder of the gut-Gastroparesis. POTS and Gastroparesis both fall under the umbrella term of Dysautonomia. You will hear me use all three terms throughout this post.

Q: What is Ehler’s Danlos Syndrome-Hypermobility Type?

A: EDS is a genetic condition, which means that I was born with it. I did not catch it, and it is not contagious. It is a gene mutation that causes my collagen to be faulty. Collagen is the most abundant protein in the body, and it plays a huge part in our joints, muscles, organs, and blood vessels. Since my collagen is faulty, all of my body is affected, which is why it is called a multisystemic disorder. There is no cure, and there is not much in the way of treatment or research. Follow this link to learn more.

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Q: What is POTS?

A: Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia characterized by a spike in heart rate when moving from a horizontal to vertical position (Laying down to sitting upright or sitting upright to standing.). Because my blood vessels are extra stretchy due to my Ehler’s Danlos Syndrome, most of my blood pools in my legs while sitting or lying down. When I stand up, my heart has to work much harder than normal to pump all of that blood back to my brain. Follow this link to learn more!

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Q: What is Gastroparesis?

A: Gastroparesis is a functional GI motility disorder, which means that my gut does not digest food normally, and there is no cure. Some people develop gastroparesis after an illness or surgery, and their condition usually resolves on its own. My gastroparesis is secondary to my dysautonomia, which means that it is something I will just have to live with. My stomach does not empty the way that it should, and my digestion is slowed immensely in my small and large intestines. On some days, my stomach will dump all of my food out the instant it hits my stomach, which leads to uncontrollable hunger and weakness. Most days, though, my stomach empties very slowly. My food from the day before may not fully empty by the morning, or my breakfast might not be gone at the end of the day. This leads to a big build up of food in the stomach, which is very uncomfortable and painful. Follow this link to learn more.

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Q: What kinds of symptoms do these diagnoses explain?

A: My EDS diagnosis explains my joint pain, joint swelling, fatigue, dislocations, and subluxations. My dysautonomia diagnosis explains my abdominal pain, fainting spells, nausea, heat intolerance, early satiety (full after a few bites), exercise intolerance, shortness of breath, low blood pressure, tachycardia (racing heart), bradycardia (slow heart), bloating, distention (my stomach swells like a balloon), weakness, chronic dehydration, fatigue, and loss of vision.

Q: What kind of doctor do I see for these conditions?

A: I have a primary care physician, an OBGYN, a gastroenterologist, a cardiologist, a neurologist, a rheumatologist, a physical therapist, and a mental health therapist. I am about to see a new neurologist who specializes in dysautonomia next Thursday, and I am very excited!

Q: What kind of treatment is available for these conditions?

A: Not much. For my dysautonomia, I am supposed to drink 2-3 Liters of water a day and increase my salt intake by a lot. I did a trial run of IV saline infusions this week, and it really seemed to help me! I am hoping to make that a more permanent part of my care. I may be adding a medication to help me retain my salt and fluids, which will increase my blood pressure and help my fatigue. There are a few motility drugs for gastroparesis, but neither are very good or safe. One is an antibiotic that will lose effects in about a month, and the other drug could cause permanent neurologic side effects if used for too long. Because of this, I have decided to manage my gastroparesis with diet and lifestyle modifications. I have a scheduled eating plan, and I do things like yoga, meditation, acupuncture, and other relaxation techniques to force my body into “rest and digest” mode. For my Ehler’s Danlos Syndrome, I could take pain medication, but they all come with side effects. I have chosen to strengthen my joints and muscles with physical therapy and decrease my pain with things like heat and ice, acupuncture, relaxation techniques, and lifestyle modifications. I don’t like to take drugs, and I try to avoid them at all costs. I do take hormonal birth control so that I have less fluctuation of symptoms throughout the month, and eventually, I will be on continuous pills for a few months at a time for even more symptom management regarding hormones.

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Those are the general Qs and As that I thought would be a good introduction into the questions my friends sent in! These next few questions are the ones I received from my Facebook friends. 🙂

Q: I have a mild form of POTS, do you have any advice for me?

A: Yes! I think it’s best to research the condition thoroughly yourself. Most doctors don’t know much about the condition, and you will be the best advocate for your own care. Since your POTS is mild, I would be sure to be aware of all of the possible symptoms. But do NOT go looking for them. If a new problem is arising with your POTS, you will notice, so try not to worry about them. It’s best to stay off of support groups and message boards as well. Most of them are just competitions to see who is sickest and other negative things. Until it gets worse, which it may very well not do at all, enjoy things as they are! Remember your limitations, but don’t be afraid to push them every once in a while. Start an exercise regimen while you are feeling well, and make sure you drink a lot of water! Get enough sleep, and learn to manage your stress. Just try to keep your body as healthy as you can, and go to your doctor as soon as you have any new complaints or symptoms.

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Q: What is the most frustrating thing about your conditions that most people don’t understand or consider?

A: I think the most frustrating thing about these conditions is that I look pretty normal on the outside. I am very skinny and pale, but in general, I don’t look sickly. I use a handicap parking pass, and I have gotten a lot of weird looks because I look like a healthy college student. I might seem very healthy, but that is only because you only see me on my good days. On my bad/sick days, I am curled up in bed with several heating pads and forcing myself to eat small amounts, even though I feel like I have the stomach flu. Also, when I ask to sit down or take a break, I really need one. I do my best to push through, but sometimes, I can’t. Just because I did something yesterday does not mean that I can do the same thing today or tomorrow. My symptoms change on the hour sometimes, and I have to do my best to manage them. Another thing that is new to me is my diet. I have to eat very strange foods in comparison to other people, so I like to eat before I see people. If you don’t make it awkward that I am not eating, it won’t be! I’m perfectly fine to go to dinner/get togethers and not eat. 🙂

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Q: How many times do I have to visit the doctor per month on average? What for?

A: This month, I have had 3-4 doctors visits a week. Most of my appointments at this point are checkups on weight, blood pressure, heart rate, symptom management, etc. I have a few weekly appointments, which are physical therapy, acupuncture, and every two weeks is my mental health therapist. In physical therapy, I am working on strengthening my pelvic muscles to help with my abdominal pain and slow colon. The acupuncture is a trial run, but so far it is pretty relaxing and seems to be helping a bit! Next Thursday I will be seeing a dysautonomia specialist, who should be able to help cut down on the doctor visits. Eventually, I will just have physical therapy and visits like that.

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Q: What happens when I get a cold?

A: I get sick just like everyone else! The only thing that makes it more severe is that all of my illnesses act up with the cold. Viruses will spike my symptoms the entire time I am sick, which really wipes me out. I don’t have an autoimmune disease aside from Celiac Disease as far as we know, so I get over colds just like anyone else.

Q: Will I be going back to school?

A: Yes! I hope to be back in the fall. However, the music program is too intense for me to jump into right away. I need to have time to continue my therapies and lifestyle modifications, so I will just be taking some general ed courses. I may return to music after the fall semester, but I will make that decision based on my health and thoughts after I finish my fall semester. If I have to choose between being really sick and studying music or feeling better and studying something that I enjoy just as much, I will choose feeling better!

Q: How am I coping with the mental/emotional side of things?

A: For a while, I wasn’t doing very well. I was fighting the reality of things, and I was really sad. Now that I know what I’m up against, I am slowly beginning to accept this as my new normal. I have several friends who understand my illnesses because they have the same things, and they help me greatly. My family is very supportive and helpful, and they help me see bad days as just bad days. When I have bad days, it’s getting easier and easier for me to accept them and wait them out instead of panicking and making them worse. I have joined an incredible support group of ladies, and together we are going through a lifestyle modification program, which has been incredibly helpful. They even let my mom join in free of charge since I am still young. Every day, I try to do something normal and not related to my illness. I have been reading a ton, watching netflix, crocheting, drawing and painting, and playing my piano when I feel up to it. Mostly, though, I have learned that the only way I can get through this is by trusting in God and resting in his promises for me. Someday, I will be with Him in paradise, and I won’t have to worry about being sick or weak or tired. That’s enough to get me through anything.

Q: Do these conditions typically affect younger people?

A: Yes! All of these conditions can affect people of any age. POTS is typically seen in young girls, and most of them outgrow it eventually. Mine is secondary to my EDS, so I will not outgrow it. EDS is genetic, so anyone who has it is born with it.

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Q: Does this give me a different perspective than most?

A: Yes! I am learning lots of new things that would benefit anyone. I’m learning how to listen to my body and to stop when I need to. I’m learning to take care of myself to keep myself feeling my best, but I’m also learning that things happen. I am learning to appreciate every happy moment and to hold on to the memories of good times to get me through the inevitable rough days.

Q: Do I connect and interact with others that have the same conditions?

A: Yes! I have several friends with various chronic illnesses, and it’s so nice to have people who understand completely what I am going through. I also have a great support group, which is the only support group I am a part of. Many support groups turn into competitive suffering (I’m sicker than you!), and they really bring me down. So I just stick to my one.

Q: How do I remain so positive?

A: First of all, I’m really glad that I seem so positive to you! I just want to be honest and say that I do still have many moments/hours/days where I can’t handle the challenges. Sometimes I see my family sitting down to eat their meal, and I leave the room to cry because it feels so unfair. Other times, I have to cancel on my friends because my heart is so slow that I can’t breathe right, and I have to spend another day at home alone. During those times, I let myself be sad. I think it’s completely normal to be sad about the things I have to miss. But being sad starts to get boring. To lift my spirits, I usually turn to my bible, devotional, or friends and family. Just being reminded that God is with me and has the power to use this for good is really encouraging. I try to memorize verses a lot so that I can remember them anywhere, and I can always ask my friends to pray for me. Another thing I like to do is watch vlogs of other girls with chronic illnesses. I especially love Jacquie Blake (who has everything I do!) and The Frey Life. These two channels are the only ones I watch because they are constantly positive, but they are still honest about their struggles. They are both christians, which I think is the source of their joy and positivity as well. They inspire me so much!

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And Finally!

Q: What can we do to help?

A:

  • Talk to me!
  • Keep in contact with me. Even if I can’t hang out, I still love to talk to you all! I like to know when you are thinking of me, especially since I’m out of school.
  • Keep inviting me to things! I may have to leave early or bring my own food, but I would still LOVE to see you.
  • Please tell me about anything and everything. I feel so out of the loop because I am at home or the doctor’s office 95% of the time.
  • Understand when I need to leave early or cancel. I am just as upset as you are!
  • Ask questions! It’s usually kind of awkward when I start feeling badly because no one really knows how to react. If you are curious about what I am doing or why, just ask!
  • Don’t tell me that my food looks gross. I am fully aware that pureed vegetables and cream of rice cereal don’t look appetizing to the average person. But most days, that’s all I can eat without feeling terribly nauseous. Telling me that my food looks/smells gross will make me feel even worse forcing myself to eat it.
  • And finally, pray for me! Pray that I can continue to make forward progress and that I can learn to manage these conditions. Pray that I draw closer and closer to God through this. Pray that myself, my family, and my friends all come to terms with all of the changes in our lives. And pray that I can use this experience to help others.

Thank you all so much for sending questions. I had fun writing this, and it took my mind off of myself for a while! I hope that this brings awareness to my conditions and explains some things that everyone was curious about. Let me know if you have any other questions!

Until next time! 🙂

DIY Almond Butter (GF, DF, Vegan)

Hello everyone!

I can’t eat much, but I can eat homemade almond butter! I thought it would be fun to share the recipe with you all.

It’s very simple and easy, and it costs much less than buying it from the store!

You will need a juicer, blender, or food processor, though. I used my Omega Juicer, which I love!

Ratings: 

Cost: 10/10
Taste: 10/10
Difficulty: Medium (It’s a little tricky without a juicer, but I’m sure it can be done just as well with a blender or food processor!)

All you need…

50 Almonds
1 Tablespoon Melted Coconut Oil
1/8 Teaspoon Sea Salt
1/2 Teaspoon Maple Syrup
2 1/2 Tablespoons Almond Milk

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First, run your almonds through the juicer/blender/food processor until the powder starts to stick together. If you are using a juicer, make sure that you are using the puree nozzle and not the juice nozzle! Otherwise, the almond butter will not stick together.

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This is the consistency you want to achieve!

Then, melt the coconut oil and add it into the almond grounds along with the syrup and salt.

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Finally, add your almond milk and mix thoroughly! If you are not on a low-fat, low-fiber diet like I am, you can leave your almond butter thick by leaving out the almond milk! I like to thin mine down a little to make more and allow myself more to eat each day within my limitations. It will look pretty runny at first, but it will set in the fridge and be spreadable by the next morning!

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It will seem runny, but it sets very nicely in the fridge overnight! 🙂

This recipe makes about 12 teaspoons.

Nutritional Information per serving (about 2 teaspoons):

Calories: 69
Fat: 6.4 g
Protein: 2 g
Fiber: 1.1 g

Some optional mix-ins:

Cinnamon
Chocolate Chips
Cocoa Powder
Coconut
Vanilla

I hope you enjoy this recipe. Let me know if you try it out at home! 🙂