I had no idea just how serious Crohn's Disease was until mine got worse. I was sitting in the doctors office last week listening to him tell me what my treatment options were. I thought I could get over this like you get over a really bad cold, but I was wrong. Every day I will be fighting for my life. Every single day...forever. I dont know how I didn't realize this before. I have really good days and really bad days and days in between. I thought it was normal. I was taking life one day at a time and didn't realize I was getting worse. I didn't realize how much life I was missing.
I found this picture and thought: "this is my life," except it doesn't talk about how painful this disease can be. It doesn't talk about the good things either, which I am learning about. Like did you know that the symbol for Crohn's Disease iz a butterfly? Butterflies are one of my favorite things. I used to tell my husband that if I every passed early I would send him butterflies so that he would know it was me. Fitting huh? Crohn's Disease is an Inflammatory Bowel Disease (IBD). I think IBD awareness is important. Way too many people have this disease, but you just don't know it. It is invisible. They call people with IBD Warriors. I think that is a perfect name because we are fighting. We arr fighting for our lives. I will be starting a new Biologic Therapy in a few weeks and it scares me. I was reading about the drug that I will be taking and learned that it is a form of chemotherapy. I just watched my husband go through chemotherapy treatments. My dose will be much smaller and much more spreadout, but I know what it does to your body. But the doctor says it works and that I should reach complete remission. I'm looking forward to that. He says "soon you'll feel like Superman!" Now that will be a greay day! Until next time my friend! Much love, Danielle
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Have you ever caught a glimps of yourself and thought, "man, I'm looking a little rough?" Well I just did, and I'm not surprised. These last four weeks have been pretty emotionally and physically draining. The weariness has most definitely started to show itself in the lines on my face and the circles under my eyes. They look more like pools really and the smeared remninse of yesterday's make up doesn't help either. But life's ups and downs come at you like waves and you can either embrace it and roll with it or get sucked under. It's your choice. Today I am embracing the fact that I am still in my pajamas and probably won't be getting a shower anytime soon. My little guy is sick and we've been spending most of the day snuggled up on the couch.
I honestly didn't know if I was going to be able to fully make it through our last hurdle. I really struggled with staying positive because I found myself overtaken by saddness and fear. I was afraid I was going to lose my husband. In the last four weeks my husband was diagnosed and treated for Testicular Cancer. Just hearing the word cancer was terrifying. It all happened so fast. He was having pain and hardening in the area and I made him an emergent doctors appointment. They told him that day that he had cancer. He is such a strong and stoic man, but I could tell that even he was concerned. I cried for two days before I could pull myself together. I really try to be strong and have grace and poise when facing difficult situations, but he handled this way one better than I did. Within a three week period my husband had an ultrasound to detect the mass, blood work to determine his cancer markers, an x-ray and a cat scan to ruleout spreading, and surgery to remove the mass and effected organ. He was such a champ and took it one day and one test at a time. All I could do was pray, and I prayed, and I and prayed, and I prayed like I had never prayed before. Now, everyone is entitled to their own beliefs and I am not one to push my beliefs on others, but in this instance I prayed, our family prayed, our friends prayed, and I whole heartedly believe that God answered. During his follow-up appointment yesterday we learned that my husband's cancer was stage 1. They were able to remove it all and the doctor believes that it is unlikely that it will come back. We will meet with an Oncology clinic later this month, but they do not think that chemotherapy or radiation is necessary. We will do what's called "Surveillance" and he will have scheduled blood work, x-rays and cat scans over the next few years to make sure that there is no disease activity. If there is no sign of disease activity after 5 years he will be considered cancer free. If this isn't a blessing, I don't know what is! This is the best possible outcome that we could have hoped for and we are both incredibly thankful. Now that we can breathe again, life is starting to return to normal. Of course all this stressed has kicked my Crohn's into full gear, but that's a story for another day. I'm going to leave you with Psalm 118.10 because that's where my heart is today: "Give thanks to the Lord, for he is good." Good bye my friend. Talk to you soon, Danielle I'm very excited. I am finally showing signs of healing, and today I was able to decrease my dose of Corticosteroids! Yay! Even though I did feel a bit lost after receiving my diagnosis initially, I have been able to do a lot of research about how to treat Crohn's Disease and Crohn's Flare-Ups and I think that it has helped. Right now, I have chosen to focus on these three things: Medication, Diet, and Lifestyle Changes. Today lets talk about medication. I have been working with a great doctor out of the University of Washington. One of my favorite things about him is how open he is at communicating with his patience. It is very important to start treatment right away when you have a Crohn's Flare, and the most common therapy is the use of Corticosteroids. Most steroid treatments are short term because if the serious side effects associated with them. This was my biggest concern because I could not afford to be on a medication with serious side effects. I don't have extra support and my life doesn't stop when I am sick so life altering side effects were not an option. Thankfully my doctor understood my situation and worked with me to chose a Corticosteroid with the least amount of side effects. After 5 weeks at the highest dose of medication, today I got to decrease my dose by 1/3. It basically means I get to take 2 pills instead of 3, but I am so excited. It means treatment is working. I'm not in any pain, I am beginning to eat again, and I've experienced moments where I feel absolutely amazing! I caught myself dancing in the kitchen with my son the other day without any hesitance at all. We were having so much fun, and the only reason my stomach hurt was because I was laughing so hard. I do miss my chin though and am not fond of these chipmunk cheeks that come with the use of Corticosteroids, but hopefully they will go back to normal as the dosage is lessened. I must say the puffiness is my least favorite side effect. That and the racing mind. My sister and I often send humorous picture back and forth to each other as a happy thought to brighten each others day and the ones about steroid use with Crohn's Disease are hilarious. The best past is they are totally true. Take a look and see if they make you laugh as hard as they made me laugh! Let me know which one was your favorite! Have a blessed start to your week! Danielle Friday nights are quickly becoming one of my favorite nights of the week. Friday nights have become our family nights. My son waits for his Daddy to come home from work every night. He leans over the back of the couch and peers out the front window eagerly waiting to see headlights come down the driveway. Then, once he sees their glow and hears the tires crunching the gravel he races as fast as he can off of the couch and to the front door. He flings it open, regardless of the weather, and waits for moment when he can be engulfed in a giant Daddy bear hug. The scene warms my heart every time. Last night my son couldn't wait to let Daddy know that it was family night, which means after dinner and after about an hour of wild play time, we get to blow up the air mattress and camp out in the living room while watching movies and eating a special sweet treat. Last night we made Oatmeal Chocolate Chip Cookies and watched Frosty the Snowman. My husband is usually the first one to fall asleep, which makes me laugh because he swears that he can't fall asleep during movies. So far he is 2 for 3, but I don't tease him too hard about it because I know how tired he is by the end of the day. Most of the time, I bake things that only the boys can eat. I have no will power when it comes to sugar, so I do this intentionally to keep myself from overeating things that I should not be eating. Friday nights, however, are the exception. The Oatmeal Chocolate Chip Cookies were both Vegan and Gluten Free, but I'm proud to say that this recipe makes such great cookies, that it is almost hard to tell that they are not your normal cookies. I have written the recipe below. Go ahead and try it. They are yummy! Too Good To Be Vegan and Gluten Free Oatmeal Chocolate Chip Cookies Prep Time: 20 Minute Cook Time: 10 Minutes Total Time: 30 Minutes Author: GraceInAGlass Serves: 24 Small or 18 Large Ingredients: * 1 Stick (1/2 Cup) Vegan Butter at Room Temperature * 1/4 Cup Granulated Sugar * 1/2 Cup Light Brown Sugar, Packed * 1 Tsp Vanilla *2 Ground Flax Seed Eggs (2 Tbsp Ground Flax Seed Plus 5 Tbsp Water, Combined **See Note**) * 1/2 Tsp Salt * 1/2 Tsp Baking Powder * 1/2 Tsp Baking Soda * 1 Cup + 2 Tbsp Gluten Free Flour (**See Note**) * 3/4 Cup Gluten Free Oatmeal * 1- 1/2 Cups Vegan Chocolate Chips (**See Note**) Instructions: 1. Preheat Oven to 350 Degrees F. 2. Using a mixer, cream butter, granulated sugar and brown sugar in a large bowl. 3. Add Vanilla and Flax Eggs. Beat until combined, scraping the sides of the bowl as needed. 4. Add Salt, Baking Powder, Baking Soda and Flour. Beat until evenly combined, scraping the sides of the bowl as needed. 5. Add Gluten Free Oatmeal and Chocolate Chips. Again beat until evenly combined. 6. Using a tablespoon, scoop rounded tablespoons of dough and place on a cookie sheet about 2 inches apart. (You should be able to get about 12 cookies per cookie sheet). 7. Bake for 8-10 minutes or until they are just starting to turn golden brown. 8. Let cool and Enjoy! Notes: *Usually you use 1 Tbsp of Ground Flax Seed plus 3 Tbsp of water when using a Ground Flax Seed Egg as an egg substitute, but I found that my batter was too runny. I decreased the water to 2.5 Tbsp per egg instead. So in this recipe, for 2 eggs you use 5 Tbsp of water instead of the usual 6. *For this recipe I like to use a Gluten Free Flour that already contains Xanthan Gum. Namaste Organic Gluten Free Perfect Flour Blend is the one I lean towards because it is free of the top 8 allergens, and we all know I'm allergic to almost all of them! *When it comes to chocolate chips, I like to chose brands that have organic options with the least amount of processed ingredients possible. It is not because I have jumped on the organic band wagon, but because I am allergic to so many things, that I find the less processed the better I feel. But, everyone has their own preferences, so feel free to chose the one that works for you! I hope you enjoy the cookie recipe. Please let me know what you think by commenting below!
Happy Baking, Danielle For me, right now is one of life's perfect moments. The house is quiet. My son is down for his afternoon nap and my girl, aka Auntie Lou Lou, is quietly doing homework in her room. I just finished putting away the groceries and am about to start prepping for Thanksgiving tomorrow. I was unsure about the Holidays this year with how much our lives have been turned upside down, but I am so excited for tomorrow. Our house is going to be full of family. There are going to be kids everywhere, darting in and out of the house, filling their pockets and cheeks full of goodies. I was concerned that we might lose traditions and it wouldn't feel the same, but instead of we are bringing back some of the lost traditions as well as making new ones. This is the first year that my son understands what the holidays are about so I think is the perfect time to start fresh. "Thanksgibing" and "Mis Mis," he calls them. One of the most common tradition in our family is the food that is served on the Holidays. This year we bringing back some of the dishes from my childhood. I will be making the side dishes that my Grandmother used to make. I can remember the Holidays at her house just like they were yesterday. They were the best of times. My Aunt and I had so much fun recently diving into the old family recipes. Most of them were hand written with little notes in the margins. I was lucky enough to be able to keep recipes from both my Grandmothers after they passed away. Your can tell which ones were their favorite because they still have food stuck on them....a little batter here, a little oil there. One of them still smells like Cinnamon, I don't know how, but it does. I am realizing that I am going to have to make my own recipes too. I am not able to eat the butter or the flour or many other ingredients that are in traditional recipes. I can't eat them because of the textures either, so I must adapt. Once I am over the Crohn's flare and am able to eat more, I am going to start searching for ways to alter our favorite recipes in order to make new ones that we all can enjoy. It's not going to be easy. I made Apple Cinnamon Muffins yesterday that were both Vegan and Gluten Free. They smelled amazing and although the flavor was okay, the texture was horrific. It was as if I was eating something that was a result of a strange gelatinous science experiment. The consistency reminded me of the stretchy gummy frogs that you throw and stick on the windows. I'm telling you it was weird. I will not be doing that recipe again. Anyway, I wish you the Happiest Thanksgiving. I hope it is full of love and laughter and many of your favorite traditions. With Love, Danielle Despite the many days of rain that we have been having, I am becoming more and more thankful for this time of year. The stormy weather makes me want to hunker down indoors and seek out warmth and comfort. I find that my son and I spend more time in the kitchen on rainy days baking up all sorts of goodies. We made banana bread and applesauce cake yesterday. I love these two recipes in particular because they are kid friendly. No mixer is needed, just a bowl and a wooden spoon. We are usually covered in flour by the time we are done and have batter on our faces, but watching him learn and have fun is what it is all about. He is learning to count and measure and is recognizing what goes in each recipe. "I get three bananas mom?" he asks. "Yes please bud!" I say.
With me needing time to rest and recover, our life has slowed down at bit at home. We spend extra time snuggling, reading, and playing quiet games like play dough or puzzles. I have been feeling less inclined to go outside and play with how poorly I have been feeling, so I am secretly thankful that the rain has kept us indoors. Instead I've been taking the time to appreciate the little things, like how he still asks me to rock him to sleep from time to time. He doesn't fit in my lap as well as he used to, but he still reaches his arms out and hugs me until he falls asleep. I know that this won't last forever and I am very thankful for the time that we have together, especially in light of the recent events that have taken place around the world. I know that there are families that do not have this opportunity. I also have taken up knitting. It may seem like an odd thing to start out of the blue, but I find that it is relaxing. I have a lot of pain in my abdomen and I am physically exhausted, yet the steroids that I am taking make my mind race. I feel as though I am wide awake all the time, even in the middle of the night. Knitting is proving to be helpful because it keeps my mind busy while allowing my body to rest. I began following instructional videos by what I think is a little old lady on YouTube. I say this because I can only see her hands, but they remind me of my Grandmothers and that alone is comforting. I'm not very good, so don't look too close at the picture, but you never know I might be some day. The rain has also brought by husband home. I feel blessed that he has been able to come home earlier at night even though I know that it hard for him not to be working. I think that he is enjoying it more and more as the week goes on. He has been able to participate in our night time routines and even cooked dinner with us tonight. The three of us made Chicken Pot Pie. I can't remember the last time the three of us cooked dinner together, last Thanksgiving maybe?. We are sharing the pie tonight with family. This is another blessing that I am thankful for. Prayers before dinner and family around that table. I hope you have a wonderful Sunday wherever you are and that you too are blessed with a full belly and family around your table. With Love, Danielle Today is day 4 of treatment for my first official flare up and let's just say this whole Crohn's thing is far from sunshine and roses. I was told I have this incurable disease, given medication and sent on my way. Right now it feels as though I am fumbling my way through the darkness. It is a good thing that I am good at researching and putting the pieces together because if I wasn't I may not be able to make heads or tails out of this whole thing.
I am still trying to sort out how I feel about this. I'm afraid that I have been a bit of a mess the last few days, both mentally and physically. The corticosteroids are a miserable drug that make me feel awful and my face all puffy. Hopefully I will only be on the highest dose for a few weeks. Then we can slowly reduce the dose until I have healed. I'm still only able to eat food in liquid form and even that is painful. I have to have less pain and be able to eat solid food before they will decrease the dose so we will see how this goes. The other thing I am struggling with is the feeling of loneliness that often follows a diagnosis like this. I have people who love and care about me, but they don't understand how I am feeling. They do their best to sympathize with me and show their support, but their life still goes on just as it always has. However, I feel as though I was just handed this bomb that has changed everything and now I have to figure out what to do with it. Does that make sense? I can't take a break from life. It still goes on and I still have to do all the things I have had to do before no matter how poor I am feeling. My son still needs to live life to the fullest and my family still needs to be taken care of. Though sometimes I wish I had someone there to take care of me....silly isn't it? But that's what days like today are for. Whether I felt ill or not we were going to have a great day, and we did. We had a mommy and son movie date. It was so much fun. My best mommy friend and I took our boys out to lunch and a movie. We had the whole back of the theater to ourselves and the boys got their wiggles out by exploring the isles and making their way up and down the stairs. It was a 3D movie too so they felt extra special with their 3D glasses on. They loved the movie and made through the whole thing. That's impressive for our two energetic boys. We may even do it again. After Thanksgiving I think. I am finding that even in the middle of this haze, there are still things that bring light into your life. Dear friends are one of them, and for me cooking is another. I know crazy right? I'm allergic to everything, I can't physically eat hardly anything, but I still love to cook. Last night I made Lemon Chicken with Baked Green Beans and Baby Potatoes. I couldn't eat it, but it didn't matter. My son loved making it with me. He learned how to zest and juice a lemon and had a blast using the garlic press. He did dilute the lemon juice when I wasn't looking, but it still turned out okay. Plus, my husband was able to come home to a warm dinner after he'd been out in the rain all day and tonight I am turning the left over chicken into a variation of "Asian Chicken Noodle Soup" by www.cookingclassy.com. (You can find the recipe at: http://www.cookingclassy.com/2015/09/asain-chicken-noodle-soup/. ) I'm a big fan of using what I have on hand when making recipes so for this one I used Sweet Onions instead of Green Onions, Button Mushrooms instead of Crimini Mushrooms, added an extra carrot because my son likes them, and omit the Sriracha sauce and dry Ramen Noodles. Why did I omit them, well I would have substituted a Gluten Free Noodle for the Ramen Noodles, but I didn't have any and I currently have an open sore in my intestines so spicy foods are not a good idea at the moment. The broth of this soup on the other hand, is delicious! I always seem to close with an interlude about my son needing my attention somehow. It is true though and is what always seems to happen when you have a little one attached to your hip 24/7. Right now he just woke up from a nap where it looks like he was dreaming about ice cream. He is going to be very upset when he finds out we don't have any. Let's see if a Popsicle will do.........hmm apparently not..... I must go dry some tears and provide snuggles now. What a hardship...snuggles!!! I wish you all the best! Talk to you soon, Danielle I have had a lot of testing done the last few weeks and last night I received confirmation that I have Crohn's Disease. The doctor said that it was a possibility when the results from the abdominal MRI I had a few weeks ago came back abnormal. He sent me in for a colonoscopy last Thursday and they did find an erosion and inflammation in my terminal ileum. Again the signs pointed to Crohn's Disease, but they wanted to see the results of the multiple biopsies they took before confirming the diagnosis. Well, wouldn't you know, they showed inflammation, infection and Crohn's Disease. That was the phone call I received last night. At first I didn't know to take the possibility of Crohn's Disease. It is not a pleasant autoimmune disease and it is one that lasts a lifetime. I thought, another chronic gastrointestinal disease, you've got to be kidding me. I mulled it over a little bit and after researching about Crohn's Disease, I started to be okay with it. Then I got the phone call last night and apparently I wasn't as okay as I thought I was. I was crushed. I was surprised that my husband wasn't as crushed as I was. When I asked him why he seemed to be so okay with it, he said "It could be worse. It's not cancer, and you are not dying." He was right. It is not cancer and I am not dying. This disease is a hard one to have, but it is not the worst that I can have. This is a well known disease and one that has many treatment options. We plan on taking this "flare-up", as they call it, head on. Tomorrow morning I am going to start on a heavy dose of an anti-inflammatory corticosteroid hormone and we are going to beat this into remission. And during this process I am going to be researching all the holistic approaches to this disease, starting with food first. I am going to find which foods I should be eating, and which foods I should not be. I did read that milk chocolate is frowned upon. It is now on the do not eat list, so I am indulging in my last piece as I write to you now. So long milk chocolate, I will miss you! I hear my little man reeking havoc in the next room. It sounds like he is jumping on the couch with the enthusiasm of an acrobat, so I must be going. Thank you for following me on my journey. The plot has thickened, so hold on, it looks like it's going to be a bumpy ride! Talk to you soon, Danielle It's it funny how things turn out. I am amazed at how my life is progressing. It is so different from what I envisioned 15 years ago, 10 years ago even. Just tonight I made a batch of refrigerator pickles for my nephew's birthday. Why pickles, you may ask? Well, because he asked me to. I'm no longer the cool Auntie that I was when he was little. It's pretty cute, he still comes to me if he has an injury or wants more cookies, but he has pretty much outgrown me and now his Uncle is much more fun. So, when he sends me a message saying that my pickles are awesome and he was wondering if I would be making more anytime soon, you know darn well that I am going to use every last cucumber from the garden to make him some more!
Even hearing myself say that I am making pickles sounds a little nuts. It is far from the driven career woman I used to be. Now I live in the country, stay home with my son and take care of my family. I have a garden. I preserve things. I bake. I make pickles. My son asked me yesterday for a pig and we might just get one. My high heels were replaced by Georgia boots and I dress more for practicality than fashion....who is this woman? Whoever she is, I like her. My life is hard and messy with a whole lot of blessing mixed in. I wouldn't change it for anything, so tonight I'm making pickles! Here's to life and everything that goes with it! May you be blessed with pickles, or whatever suits your fancy! Love, Danielle As individuals, each of us have our own unique personality traits and characteristics. Some of them we may like, some of them we may not. Either way, it is these qualities that make us who we are. One thing you may have noticed about me is that when I am faced with a difficult situation, I tend to turn into a bit of a hermit. My first instinct is to look inward to reflect and really think about the situation. I become more of an introvert and much less of an extrovert. I did find recently that this isn't always the case when it comes to my feelings towards other people, especially their safety. I experienced this this weekend when I was picking up my sister and I thought she was lost in the airport. Apparently I also have a personality trait that includes a crazed mother bear. Let's just say it I will be working on that part of my character because no one needs to see that again. At least I can say that I fight for my children, but in most cases my closest friends and family know that if I haven't talked to you for a while, it usually means that something is going on. I realize now, that this might not be the best quality to have when you are a blogger. I had a great talk with some friends about this topic today. I find that having new perspectives is helpful. My main goal for this blog is for it to be inspirational. I write as a form of healing, but I also write with the intention of helping people. Not everything I write is positive, but for the most part I try to keep it that way. That becomes hard sometimes when I am facing personal difficulties. This brought up the topic of social media, and the Facebook effect for example. People have a tendency to post only the happy things, the most flattering pictures, their best family vacation. Life is almost perfect, according to Facebook. I have a tendency to do this exact thing. I don't want to look like a hot mess while others look like their lives belong on Pinterest. "Oh look at her, she looks like another Pinterest fail." But it's not real. When we really get down to it and get to know each other we will find that we are not perfect, none of us are. Each of us has something we are working on or battle we are fighting. One person's struggles might be bigger than another's, but each of us are working through something. My friends were kind enough to point out that sometimes it is the truth that makes the difference. Sometimes experiencing someones struggle along with them and being able to relate to them is what helps the most. I took those words to heart. My life is not easy. Having a chronic disease does not define me, but it does make even the littlest tasks that much harder. My intentions are to help you, to encourage you, and to be a friend. I will not shy away from the truth, instead I will share with you my experiences, even if they they are raw and ugly at times. Thank you for following along with me in this journey. Here's to another day! Cheers my friend! On to tomorrow! |
AuthorHi there! Welcome to Grace In A Glass. My name is Danielle and I am so happy that you are visiting this site today. We all have something in life that we are working to overcome. I began blogging about my struggle with overcoming Esophageal Dysmotility and Crohn's Disease with the hope of reaching others with words of encouragement and hope. Thank you for letting me share my stories with you, and hope you have the most wonderful day! Archives
November 2022
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