Sometimes after a hard week of body aches, joint pain, and incredible fatigue I find myself feeling easily discouraged. I caught myself singing the blues more than once today and felt that I needed to turn things around. Instead of burying myself under all of the things that I couldn't do, I chose to remind myself of all the things that
With a blink of an eye, it seems, the Holidays are here. I used to love the Holidays. Seeing family, eating good food, watching the faces of the ones you love as they open the perfect gift. This year seems to be different. I’m finding the Holidays particularly difficult. Our family is a bit displaced again this year and I’m feeling the worst I’ve felt ever. The thought of travel and foods that are not my “safe foods” make me nervous and not want to go. I found myself searching for the joy as I pulled down my long driveway after picking my son up from Preschool. I couldn’t seem to get out of the funk.
His sweet-self fell asleep on the way home so I came to home to a quiet house. I made myself a cup of tea, one of my favorite things, and thought “how am I going to do this upcoming Holiday?" I turned around and stared at my cookbooks and one just stuck out. Literally, it was out of place and caught my eye. It was my late Grandmother’s orange “Betty Crocker's Cookbook.” It’s funny, I can’t eat a single thing out of it, yet as soon as I pulled it out and opened it up I felt instantly at peace, like she was saying “here honey, this is how you will do Thanksgiving.” I turned to the pie section and was instantly filled with love. I saw signs of her everywhere. I quietly read through each recipe and could easily pick out her favorites. They were the recipes where the pages were torn a bit from the binding and the oil had turned the pages yellow. I had to be careful because some pages were stuck together from leftover pie dough. I was searching for her pumpkin pie. I felt panicked for a second because the quantities of pureed pumpkin and evaporated milk were missing, but I caught my breath once I realized that they were there under little pieces of paper that belonged to the page before. Once I carefully revealed the complete ingredient list I was at peace once again.
Yes, through pumpkin pie is how I will find the joy of this Thanksgiving. My dear friend and her kiddos are coming over on Wednesday and I am going to teach them how to make pumpkin puree and then we will make pies together. This may be a new tradition, Holiday pie making. I hope it is because time with the people you love is always something to be thankful for.
As we near the upcoming Holiday, I wish you and your family a very Happy Thanksgiving. I hope you too have the most wonderful day!
We've made it a month. Since I wrote you last, I have have had 4 weekly injections of Methotrexate and I have completed two starter doses of Humira. Life has gotten back into the swing of things and we are starting to settle down into the new routine. This last month I have learned that my body does not like Methotrexate. In fact, it made me so sick that my Doctor, my Pharmacist (yes, I have my own through my IBD Clinic and feel very fortunate) and I opted to cut the dose in half. This made a huge difference. Instead of being sick 7 days a week, I am only sick for 3 days a week - 4 days if it is a Humira week, and with the help of Zofran for nausea, it is totally do-able. I don't feel very good, but I can manage! I even made it to my son's soccer game last week. That's a big deal!
Besides the fact that the Humira injections feel like a giant bee sting, I definitely prefer those over the Methotrexate. I'm excited though. My Doctor thinks that I will notice a huge difference in how I feel in 6 to 8 weeks after the initial Humira dose. That mean I should be feeling better by Christmas and maybe like a champ by my birthday, which is in January. Hopefully in 6 months I will be able to reach remission and get off of the Methotrexate. Let me tell you, that will be a great day!
One thing that I am having a really hard time with is my body image. When you have Crohn's Disease your body fluctuates. You lose weight and gain weight quickly depending on what stage your disease is in, if you are in active flare, and what medication(s) your are on. It's very rude. I learned the hard way that you should keep different sizes of clothing on hand because you will change so much. Squeezing into a tight pair of jeans when you are bloated and have abdominal pain is about the worst thing ever.
I was so discouraged this morning when I hopped onto the scale. I am the heaviest I have been in 3 years. I could feel my body changing again so I've been really trying to incorporate more fruits, vegetables, and lean meats into my diet. I even researched a meal plan that provides the proper number of servings and serving sizes for the calories that I need. I found that I have a very hard time eating everything. It is especially true on my rest and recovery days. I feel so sick on those days that all I want to eat is my "All-In-One" vegetarian protein shakes and rice cakes with peanut butter and honey. I'm always secretly afraid of what people will think of my weight changes and am often embarrassed. I don't want them to think that I am lazy or that I just don't care. I'm not lazy and I don't eat junk. I do like sugar, but I am super conscientious of what I feed my body. I haven't eaten a pastry or a piece of bread in 3 years. I don't even remember what toast tastes like.
My sweet husband noticed my distress this morning and kindly reminded me that this is the disease and once we figure things out it will be different. Of course my discouraged self said "we've been trying to figure it out for two years." To which he replied "yes. And we may have to figure it out for two more years, but that is okay. I still love you." He is right. My goal is not the number on the scale. My goal is to feel healthy again, to feel strong, and to be able to walk more than a mile - which even now is proving to be difficult. We'll get there, even it if it is one moment at a time.
Being a person who has to have goals, the Take Strides Walk for Crohn's Disease and Ulcerative Colitis is taking place in Seattle Sunday June 11th. My goal is to walk the 3+ miles this year. I am doing this walk, even if I have to finish in a wheelchair. Would you like to do it with me? I'd love to have you on my team! Just let me know!
Time has flown by this morning and I see we have almost reached the afternoon. I have a load of laundry that needs folding and I am going to attempt to clean the floors. Wish me luck!
Talk to you soon!
Well we did it! We made it through the first week of Methotrexate Injections, and let me tell you, they are not for the faint at heart. They are a mean beast. I’m not going to lie and tell you that I wasn’t scared to start this treatment. I mean I’m injecting myself with small doses of chemotherapy; okay well technically my husband is injecting me with the chemotherapy, but still who wants to do that? Just the word chemotherapy itself is scary. Plus, if you do any research on the drug like I did beforehand, you’ll find pages upon pages of warnings and side effects. Awesome! Not to mention that it is a real needle, not an injector pen, but an actual needle and you have to draw up your own dose of medicine directly out of the vile. Don’t drop it and don’t mess up. I may have cried…twice. But in all honesty, once you get past the needle business, the shot itself isn’t that bad. This is the one time in my life that I am thankful for the extra adipose (fat) tissue I carry around my middle. I may not look fantastic in a bathing suit, but it saved my ass...literally. Apparently, getting a shot in the bum was an option, but it stings more without the extra padding. Expose belly here…
Now the evening of and next few days after the shot, well, those pretty much suck. The side effects vary by dose, but I felt as though I had the worst case of the flu ever. (I have a new found respect for my husband, let me tell you! His chemotherapy treatments were way worse than mine!) I fought waves of nausea, body aches, and had no energy to do anything. I was hungry at times, but I didn’t really want to eat anything because I felt so nauseous and everything tasted funny because the medicine gives you a metallic taste in your mouth. Even water tasted funny. I basically lived on the couch for two days. I tried to be Superwoman and went grocery shopping on day two, and boy was that rough. Thank God I didn’t run into anybody I knew. Day three was a little better. I still felt nauseous at times throughout the day, but my energy was coming back. By the afternoon of day four, I felt amazing! No joke, it was the best I felt in a long time. I don’t know if it was because I felt so bad earlier in the week that this day felt so good, but I don’t care, I’ll take it. Today is day five and I did 30 minutes of yoga and took a walk today. This afternoon I’m feeling tired, but I know it is because I over did it today. I was so just so excited. It gives me hope though; a peek at what life might actually be like when this is all over. I will have to continue taking the Methotrexate injections weekly for six months to a year. This Wednesday starts week two. Then the following Monday I will add a second Biologic Therapy. I will begin injections of Humira as well. Now I’ve heard the side effects from this drug aren’t as bad, but the shot is worse. It stings and I get four shots the first time. Yay! Bring on that belly!
You may notice in the pictures that I posted, one includes my son. I did take him with me. He was fighting a cold and he ended up coming with us to my appointment. I think it was a good thing though. The staff at the University of Washington Digestive Disease Center is awesome. They calmed Mommy down and put my son at ease by giving him supplies to play doctor. He thought he was pretty cool and watching me get the shot helped him understand that Mommy is sick, but this medicine is going to make her feel better soon. He was not afraid and I don’t think that he will be afraid if he sees my husband giving me a shot later on. And even in the days after when I felt sick, he understood that it was because of the medicine and that Mommy would feel better soon.
I am so thankful for the support I had this last week. My husband came with me during the appointment and helped me through the night, my best friend came and took care of me on my worst day, and my dad came over on day two. I even had people to look after my son. I do not take this help for granted because there was a time recently where I felt incredibly alone, like I had no support. It has taken a lot for me to learn to ask for help, and thankfully these wonderful people had patience with me and just continued to be there.
This Disease is not an easy one, and you do not have to go through it alone. Allow those walls to come down and ask for help, because you are going to need it. And then one day when you are able, you will be able to help someone else. That’s my goal. People say everything happens for a reason and that God doesn’t give you more than you can handle. Well, I don’t why I have this Disease, but I do put my faith in God. Something good will come out of this, even though I don’t know what it is yet. But there is always good.
I hope you are having a great start to your week. I’ll be underground for a few days come Wednesday, but I will talk to you soon.
Have a great day my friend!
To say that I’m struggling right now might be an understatement. I don’t know how to do this. I don’t know how to live with Crohn’s Disease. It affects every aspect of my life and I feel like I am failing…at everything: parenting, being a good wife, being a friend, staying healthy…everything! I don’t have the energy to keep up with life, and it is so frustrating.
I’ve always been a goal oriented person. I set them and I reach them – period, but this disease I have no control over. I have no control over my body. I make a plan for the next day before I go to sleep and I wake up feeling so sick that I all I can do is snuggle on the couch with my son. Your son should only have 2 hours of TV time…please excuse me while I laugh…yeah I’m trying. It seems like almost every day he asks me “are you sick momma? You not feel good?” It breaks my heart, and every time I say “no baby. Momma doesn’t feel good. Let me rest a little and I will come and play with you.” Even now as I write this, tears are streaming down my face. “Are we going to see the ambulance today?” he asks. “Not today!” I say. At four years old he is way too familiar with firetrucks, ambulances, hospital rooms, and doctor’s offices. “I’m sorry you don’t feel good momma…” Insert sob here. Momma is sorry too.
I want so baldy to feel healthy again, to feel strong, and to know that there will be more good days than bad days. I saw a picture today on Pinterest from Flamed-and-untamed.com of real life at home verses how the public perceives you. It’s so true. I feel like I’m living a double life because you can’t see this disease. When we head out of the house I’m dressed, I have make-up on, my hair is done, and for the most part I’m pretty put together. My little guy is pretty much put together and we are on a mission to tackle the day. At home is a different story. I’m a yoga pant, messy bun wearing, hot mess with probably a little smeared make-up to top it off. I try my best to keep up with everything: the housekeeping, laundry, cooking, the dog, the cat, the chickens, dinner, soccer practice, preschool, coordinating MOPS, but really I just want to rest. Most days nothing sounds better than my comfy bed and a movie. I’m a wife and a mom of an active 4 year old, I don’t have time to rest.
I’m having a hard time accepting that this is my life. I don’t see myself as a sick person. I’m both excited and terrified of the new medications that they want me to take. Two different chemotherapy drugs at the same time, awesome! Methotrexate and Humira. I’m told it will make you feel sick, but it will also give you your life back. I’m shooting for let’s give you your life back! Yes! Let’s do it! The other frustrating part is that the insurance companies are dictating my care. I have been denied medication that is proven to work because it is too expensive. “Let’s have her try this medication first.” Ummmm, let’s not. Let’s go for the medication that we know will work. Why do I have to fail on others first? You’re messing with my life here, because you are too cheap. Nice!
I hear my little guy causing havoc in the other room. I’m guessing by the sound of it he is trying to wrestle the dog for the dog bed. Fun, fun. We’ll see who’s winning….oooooo growling. I think the dog is winning, or maybe he’s just riding the dog? I’m not sure.
Thanks for letting me get real with you on this Saturday afternoon. Sometimes it is helpful just to say it like it is. We’ll see what tomorrow brings. Let hope for a great day!
Talk to you soon!
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!
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,
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!
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
Serves: 24 Small or 18 Large
* 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**)
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!
*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!
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.
Hi 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!