Hello again my friend,
I sure have missed you. It is amazing how God works. Today is 2 years to the day of my last post. Part of me felt like it was missing and I didn't know what part it was until my sweet Aunt messaged me today and said "Where are you? Do you still have your Grace In A Glass thread? I miss it." To which I said, "no I got hacked and I had to start over." But then I realized, my social media got hacked, not you. Not my blog. I went, "oh, I miss it. I miss writing. I miss my people." How fitting though, starting over. I've had a few "starting overs" or fresh starts since I spoke to you last. The beautiful picture above is the view from my new home. My family and I really started over. We packed up our things, sold what we couldn't take with us, and hit the road and settled in a tiny town of about 225 people. It is the most peaceful and beautiful place I have ever seen. We've lived in an RV for the last year and a half and are building our dream home. I've named her Gloria. She is framed and sheeted. She has been wrapped in plastic, and we are in the process of putting in windows and doors and drying her in. My husband is amazing and has built her from the ground up. Hopefully we will be able to move in in the spring. I taught at the local elementary school last year and really enjoyed being a Title 1 Paraprofessional. My son enjoyed his time there too. I love kids and I love teaching, but it was hard on us all. My body didn't like it. I caught the Rona last December and it took 6 months to get back on my feet. My Crohn's really didn't like it and neither did any other part of my body. It was really scary. It's been almost a year, and with the help of my good friend/Functional Nutritionist I've been able to get back on my feet. It was a life changing experience for me. It was the second time Nutrition saved my life. Without my friend, I don't know if I would still be here. Thank God, my journey is not over yet. It is funny how God works and how life ebbs and flows. Without this low point last year, I may not have remembered how much I love nutrition and cooking and helping people heal. I forgot how important it is. I forgot my own healing journey. My Grandmother was a healer. She studied herbs and Chinese Medicine and her herbal books with her handwritten notes on the pages were my favorite thing to read when I was at her house. You would always find me with my nose in one of those books. She gave them to me when she died. I put them away because it was hard, hard to read, hard to miss her like that. She told me once that I was a healer, but I didn't know what that meant. I thought yeah okay, I do want to help people someday, but life got busy. I became a wife, a mom, and I did whatever we needed to to get by. But then something amazing happened. We moved here. We met people, people who use herbs and nutrition to heal first before medicine. People who make you bone broth soups when you are sick and smother you in "Tommy cream" when you get hurt. I see remedies like my Grandmother's. Life feels different here. It feels like we are in the right place and doors we didn't even know we wanted or needed are starting to open. Besides building a house, one of my dreams was to finish my degree, and prayers I said long ago are being answered. In a few months I start school to be a Nutritional Therapy Practitioner. I get to finish. I get to heal people with the same nutrition that has healed and still is healing me. I guess my Grandmother was right. I too am a healer. The sun is going down and I can feel the chill in the air. Winter came early this year and there are a few evening chores that need to be done before it freezes again for the night. I'm still getting used to farm life and seasons. So I must be going. It was really good talking to you. I'll jump back in with my next adventure soon. Much love, Danielle
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"Let thy food be thy medicine and thy medicine be thy food" by Hippocrates has to be one of my all time favorite quotes. It is actually going to be the focus of my healing journey. When you are trying to heal your body from an inflammatory disease, like Crohn's Disease for example, getting the inflammation in your body down to the lowest point possible is the priority, and believe it or not, what you eat has a huge part in that.
Food is delicious of course, but it is made to be fuel for your body. Every person's body reacts different to the food they eat. Some people have zero problem digesting and processing the food they eat, but quite a lot of people have sensitivities or intolerances to certain foods. Sometimes you don't even know it until you take it out of your diet for a while. For me personally, I have allergies and intolerances to gluten, eggs, milk, corn, sugar, beef, pork, and nightshades. I know...all the good stuff. I did really well eliminating these foods from my diet three years ago when I was first diagnosed with Crohn's Disease, but if I am completely honest, I have allowed more than I should back into my diet and even if it is only occasionally, it still really hurts my entire system. After Friday's reaction I really need to buckle down and change my lifestyle. This isn't change until I can fit into my favorite pair of jeans, it is change so that I can stay alive. If I want my body not to kill itself I have to keep my inflammation down to zero. I wish the reality wasn't so harsh, especially with Thanksgiving this week and Christmas a few weeks later, but it is. No cheating! How am I going to do this you may ask? Well I took my tea plain this morning so that was fun. (I am a coconut cream and sugar girl kind of girl. One lump or two? Two please.) The plan that fits my intolerances and food allergies the best is the Whole30 Diet. It works well because it focuses on healing your gut and eliminating the food that causes inflammation in your body. If you are curious about the Whole30 Diet, please click here. Well my friends, I am still quite exhausted from Friday and need to rest. I thought I would be feeling a little stronger than I am by now, but hey, I made it from my bed to the dining room table this morning. I hope to be able to take a little walk today. Wish me luck! Until next time. Much Love, Danielle My Beautiful Soma,
As I sit here this morning, still feeling the effects from Friday, I cannot believe we made it through. We have been through a lot you and I, and I must admit that I have not treated you the best, nor have I given you the respect that you deserve. You are simply amazing. Every six weeks to eight weeks for the last three years, you have been pumped full of medication meant to knock you down. Our immune system has been brought down to zero, over and over again and I have no idea how we are still alive. I should have listen to you. You were telling me what things hurt you: medications tried and failed, allergens, nightshades, sugar...the list is long. But I hear you now, loud and clear. Thank you for hanging on. I may be missing a few organs after it all, but you still continue to fight. Too hard at first, thank you Crohn's Disease, but hopefully from now on it will be a little easier. I don't think that I have ever cherished you for who you really are. When we are young, our vison is flooded with images of what the body should be. What it should look like, how it should act, how it should be covered, what it should be. Instead of being shown that we each are an amazingly beautiful organic structure, we are told what we are not. I have never truly loved you for who you are. I have not been grateful for what you have given me. Instead I have focused on what I thought you were not....not thin enough, not feminine enough, not small enough, not graceful enough, not pretty enough, too pale, too strong, too big, too tall. I didn't realize how beautiful you are. Your skin is beautifully pale like your ancestors and your strength is shown in your build as we are strong people. Your freckles show your love of sunshine as do the tan lines you have all year long. Your scars show that your life was not boring and the lines on your tummy show that you grew the miracle of life inside you. The glittering stands that are beginning to shine in your hair are a celebration of the years you have been living. The soft middle you like to hide is the first place the children hug for they find love and comfort in your arms and those calluses on your hands; well, they are the proof of the hard work and dedication to the life that you have created with the man you love. I promise to give you what you need to be your best. I promise to nourish you with the food you need, hydrate you, rest when you ask for it and to exercise not because I want you to look a certain way, but because I want you to be healthy. I will take care of you like you have taken care of me. I will forever be grateful for the life we have had together and look forward to where life will take us from here for there is no me without you. Thank you my beautiful body. Here's to the many years to come. Love, Danielle ***Disclosure: I am not the woman in the photograph. It is a beautiful silhouette by Linnea Lenkus*** Hello my friend,
To say that last night was scary for me is an understatement. I am still feeling the effects this morning and my mind is a spiderweb of questions and emotions. You know that little voice in your head that whispers in your ear? The little Jiminy Cricket that tells you that something probably isn't right? Maybe it is a gut feeling that acts as your conscious. Well, I should have listened to mine. When it comes to having a disease like Crohn's Disease, there are so many unknowns. There are even things that the doctors don't know. So they use there best judgement and suggest a treatment that will help you with your disease. Sometimes they work and sometimes they don't. For me personally I have to fail a treatment or two before we find one that works. Last night my body rejected my Remicade treatment. I should have listened to my Jiminy Cricket. This treatment has always been hard on my body and each infusion seems to get harder. I would explain this to my doctors each time I saw them, but because it had effectively put my Crohn's into remission they wanted to keep me on it regardless of the side effects. It was a life or death choice and they were hoping that this medication would last 20 years. It lasted 3. With each infusion my side effects would worsen. I would get the "normal" fatigue afterwards but I also would get a fever, muscle aches, the chemo sweats, nausea, and joint pain. I felt like I had the worst flu ever and it would last for 3-4 days. Then I started to get side effects during the infusions. The first suggestion was to add Benadryl at the end of each infusion along with the Benadryl and Tylenol I would take before them. The Benadryl at the end was to help the abdominal muscle cramping that I would get on the way home. Then we added the steroid Prednisone to take with breakfast with the hope to lessen the side effects I would get afterwards. Next we tried slowing the infusion rate down to see if my body would handle a slower dose. Yesterday we added a higher dose of Prednisone with breakfast. None of these things worked. Half way through my infusion I started to get muscle cramps in my abdomen and I started to sweat. I knew I was feeling warm, but I brought it to my nurses attention when I noticed that my hair was wet from all the sweat. I also started to feel pressure in my chest and when I sat up from my resting position I instantly got a head ache and nausea. My nurse paused my infusion and asked if I wanted to wait a few minutes to see if the symptoms would calm down. We waited, but they only got worse. Then the charge nurse came in and took my vitals again. My heart was racing and my blood pressure jumped from 122/76 to 155/90. That was a big red flag so out came the oxygen, 50mg of Benadryl, and the IV steroid Solumedrol. After my nurse conversed with my GI doctor, it was suggested that I stop today's infusion. Thankfully after some water and resting time the Solumedrol and the Benadryl kicked in and my blood pressure came down enough and I was allowed to go home. The story did not end there. Unfortunately after I got home my heart decided that it wanted to race. No matter what calming exercises I did, I could not get my heart rate to go down. So I called my doctor on call and after explaining my symptoms of the racing heart beats, chest pain, and left side numbness, the nurse quickly said to hang up the phone and call 911. My husband was away from the house picking our son up from the sitters and I couldn't reach him by phone so of course this made my anxiousness feel much worse. I did call 911 and spoke to a wonderful Operator named Operator 109 and he instructed me to chew an adult aspirin and wait for the Fireman and Ambulance to arrive. He was wonderfully patient and kind and stayed with me on the phone calmly insuring me that they were on their way and helping me take deep breathes. It must have been a sight. Two Ambulances and a Firetruck took up my long driveway and my house was full of Paramedics and Firefighters. By the time they arrived my heart was beating so fast that my body was convulsing with each beat and I could hardly breathe. Operator 109 had instructed me to stay where I was, which was on my bed king sized bed, so before you know it I had one Firefighter on one side of me in bed hooking me up to the heart monitors, another behind me in bed with the blood pressure cuff and also helping hook me up to monitors, and another at the foot of my bed using my doctors paperwork to input my information. A minute or two later my whole bedroom and living room was full of men in full Covid-19 protective gear. What a sight. My heart rate was 159 and my blood pressure was higher. I was put on a gurney and transported to the Ambulance and it was off to the hospital for me. After 2 oral sprays of nitroglycerin, 1 adult aspirin, and 4 baby aspirins in the Ambulance, my blood pressure came down 18 points, but my heart rate still stayed at 150. It took six hours, 2 types of IV medications that I still don't know what they were, and bags of fluid for my heart rate to drop to 95. It is still high for me as my resting heart rate is usually in the 50s. But I am alive, exhausted, but alive. My blood work showed that my thyroid levels were not right and that contributed to the racing heart rate. Both the rejection of the Remicade and the Hyperthyroidism from too high of a dose of thyroid medication played off each other. It was a race to see which condition was going to have the most symptoms it seemed. They ended in a tie. My thyroid medication was lowered and there will be no more Remicade for this girl. What does that mean exactly? I'm not sure. I will have a colonoscopy (fun, fun) and an MRI to check the inflammation in my body and the state of my Crohn's Disease and I will have to be very good about implementing an Anti-Inflammatory Diet and Stress Relieving Techniques. I have to keep my body from attacking itself. I don't know what is worse, your body attacking itself or your medication attacking your body. My number one priority is to stay alive. I thought Remicade would help me do that, but it is up to me right now. I think back and wonder, if I would have stood up for myself and pushed further for the doctor to hear me when I explained how bad the Remicade side effects were, could last night have been avoided? This was the biggest lesson for me from last night. Listen to your body and speak up. The Doctors try their best, but they are not you. They don't have your body, nor do they have your Jiminy Cricket. You know what is good and bad for your body. You know how your feel. You have a say in the care and the prescriptions that you receive. You have the right to your own body. It is your body, it is your voice. Don't be afraid to use it! Thanks for listening my friends. It is back to resting for me. Until next time! Much Love, Danielle Hello my dear friend,
It has been quite a long time since I wrote last. I hope this letter finds you well. Much has happened in the time that has passed; too much in fact to include in this letter, but I am so glad that through the ups and downs I found my way back to you. Writing for me is therapeutic. It is a way for me to connect with people as well as process the jumbled up emotions on my inside. I'm sorry that I stopped writing for a while. My heart was broken and I couldn't find the words. You see, this blog was used against me in a court of law. Can you believe it? I couldn't. I began this blog as a way to help people and myself. I needed inspiration after my diagnosis and during my struggle with Crohn's Disease and Esophageal Dysmotility. I wanted to stay positive and keep trying to live a "normal" life. My doctors and therapist suggested that I write and blog as a form of encouragement for myself and others. But when I filed for disability the judge used this and every good part of my life against me. Because I was too positive and continued to try to stay healthy and happy, I was not sick enough. It didn't matter how much I was suffering or what abilities I had lost, it wasn't enough. My positive way of living in this case turned out to be not so positive...a negative in fact. As a result I lost my hope and my positive outlook on life. I tried to fake it every day and wear a mask, but inside I was dying. My health started to decline after that: my infusions started taking a tole on my body and my little organs started to fail. My liver enzymes started to rise, my thyroid stopped producing it's essential hormones, I was losing my hair, and my reproductive system failed and a hysterectomy was needed. I also lost a few people that I loved the most. My weight started to rise and my spirits lowered. I was lost. After a few come to Jesus moments and deep conversations with my husband, I realized that the path I was going down was not a good one and that I had to get off the train. So I went to work....not at a place of employment, but on myself. I took a deep look inside and found the pieces that were broken and began the hard process of healing. I started going to a program called Celebrate Recovery and worked through a ten step healing program. I learned about unconditional and conditional love and how to love others and myself. I also wrote a book and published a children's book. It has been a very hard process, but it is good. I don't want to have Crohn's Disease anymore and I don't want to have to do Remicade Infusions either, but this is my life today. This is where I am at. I have to make the best of every day,, good or bad, and find the joy that God has given us. I met a new doctor yesterday. He is young compared to my last IBD Gastroenterologists. He listened and asked questions and for the first time asked me what I wanted to do. Five years of seeing GI Specialists and he was the first one who asked me my opinion of my Disease and where my life was at. It was a freeing conversation and through eyes brimming with tears, I explained how hard the Remicade is on my body and more than anything, how hard it is on my mind - my spirit. He heard me. He said my physical reactions to Remicade are severe and concerning. He said let's see if we can do something about it. Let's see if we can make it better. We are going to begin testing to see where I am at with my inflammation levels and what my Disease state is and see if we can go down another road...the one less traveled. One where we can let body take care of itself. One without chemotherapy or harsh drugs. Is it risky? Yes. We are talking life or death. My body could fail and the Crohn's Disease could flare up again and kill my insides. But what if it didn't? What if it is okay? This Friday is our first step in the testing. We will test to see if my body is building antibodies against the Remicade. I also have my infusion Friday too so we increased the dose of pre-infusion steroids to see if that will help with the side effects. Wish me luck! Now I'm off to frost cupcakes for my Hubby's birthday. He is a bit antsy this morning and ready to get this day started. I am too to tell you the truth. Today is going to be a good day. The sun is not shining outside today, but it is in my heart. Sending you much love my friend. Until next time, Danielle Today I give you permission to take care of yourself. You may think that it is weird that I am giving you permission to do something, but I am because sometimes we need it.
How often do you not do something for yourself because you feel guilty? Or because someone else needs something? Is it because you feel that something else should be done first, like cleaning the kitchen for example? How about this one: do you feel like a bad mom if you are not paying attention to your little one while you take care of yourself? How many of you said yes to these questions? I did, this morning in fact. I signed up for 30 days of yoga with Yoga With Adriene and today I told myself that I would try my best to complete day 1. I set myself up with my yoga mat, tablet, water, and pillow, and set my son up next to me with a movie and snacks and wouldn't you know it, all those guilty thoughts flooded my brain within the first five minutes. We were working on breathing and centering ourselves and all I could think about was that I was an awful mother and housewife because I am letting my son rot his brain with screen time and I have a dirty kitchen. It is so easy to sabotoge yourself and make yourself feel bad when in all actuality you shouldn't. I kept telling myself that I am taking care of me and that nothing bad will happen if I do one yoga video. And you know what happened? Nothing bad. My son was fine, my house was the same as I left it, and I felt great. My body felt good, my mind was happy and at peace, and I was so proud of myself. I did the whole thing and it was awesome! That mean girl in my head telling me all those bad things can just take a hike. So, I give you permission to do something today to take care of yourself. It doesn't have to be a big thing, it could just be a hot shower, but do something for you that is good for you and makes you feel better! I can't wait to hear what you did to take care of yourself today! Let me know so we can celebrate together! Talk to you soon! Danielle Hello my friends,
It has been almost a year since I wrote to you last. The last time we spoke, we had just found out that my husband's cancer had returned. Life suddenly became too much and all of us had to take a step back and focus on one thing at a time. Thankfully, everything cancer-wise turned out just fine. He is cancer free at the moment and we are blessed. It is finally my turn to focus on myself and figure out how I can get better. My Crohn's Disease is is in remission, hallelujah, but I am learning that it will never be completely gone. My Arthritis is doing okay - yay, but my Fibromyalgia is kicking my ass. Surprisingly, my biggest struggle is with food. My blood sugars are all over the place, and I have no idea what to eat. Every day is a learning lesson. I live by trial and error. The trials are interesting and the errors...well let's just say I try not to do the same error twice. I am learning to accept where I am physically, no matter how frustrating it may be, and make the best choices that I can everyday. This leads me to my word for 2019: Dedicate. I am going to focus on dedication, dedication to the things that will make me healthier, stronger, and improve my quality of life. I really don't know exactly what those things will be....remember trial and error, but if you'd like to, you are more than welcome to walk this journey with me. I will post all of the different things that I am trying, recipes, exercises, supplements, the ups and downs, all the good stuff. 2018 was great, let's make 2019 even better! Chat with you soon! I'm off to celebrate New Year's Eve with my family. Much Love, Danielle I have a confession; sometimes I am afraid of food. It sounds bizarre, but it is true. There are days when I feel like everything I eat, no matter what it is, makes me feel sick and in pain. So, sometimes I’m afraid to eat. I read every food label and make sure it doesn’t contain wheat, corn, sugar, or milk. I even have to watch the texture. Going grocery shopping can be a nightmare. No one caters towards people like me. It seems like eating real food is an anomaly and safe foods are hard to find, so I started making my own. I started making everything “from scratch.”
Believe it or not, I ate a completely liquid diet for a year until I could re-introduce solid foods. Was it a hardship, kind of, but I didn’t mind. It made me realize the nutritional value of each item I ate. Plus, I like to cook and it is fun when people ask you "wow, did you make this from scratch?” I was the only one who had to eat this way. Everyone else in my family could eat anything they wanted. That was until this week. I started noticing my son was starting to have behavioral problems. Not crazy behavioral problems, but enough to make me think “what is happening to my kid?” Let me explain, most of the time my son is a doll. He is feisty and fearless, but he is kind and has manners and is a “yes, Momma,” “I love you Momma,” kind of kid. But there are times when it is like a switch gets flipped and he turns into a little tornado. He can’t control his energy or his movement and his attitude is monstrous. It’s like Destructo has entered the building. I don’t even recognize my own kid. We had two instances just this week. One was at a get together among my Momma friends. I had to leave because all of a sudden my son was not listening, speaking rudely, and having unruly behavior. He fell asleep on the way home and woke up a brand new kid. The other was at his speech therapy appointment. He was so wound up and jittery. It was as if he was shaking with energy. His therapist even commented and said “this is different for him. Something is happening.” I said “I know. He is so full of energy. This is not like him. I don’t know what to do.” So we put our heads together and worked backwards from that moment to the time he woke up. We came to the conclusion that both instances of this crazy behavior happened not long after he ate. I’ve been watching and tracking his behavior and it seems like these instances happen after he eats food containing food dye, white flour, and/or sugar. Take them out of his diet, and he acts totally different. No joke, you give him one of these things and he will go a little crazy, fall asleep and then wake up a completely different kid. Like he doesn’t even know what happened. It makes me question, what is in our food? I thought I was making healthy food choices for him. He loves fruits and vegetables and eats balances meals, but you add in some gold fish crackers, something with high fructose corn syrup, or heaven forbid a Gogurt, and you will see a change in him…and not a good one. So that got me thinking…he’s 4 ½, almost 5, how can I change his diet and still keep him interested in eating it? We don’t want to revisit the squash incident of 2015…let’s just say we were going to see that bite of squash he ate again…and quickly! What goes down must come back up? Um, no thanks. My answer is scratch. I am going to make his favorite foods (like bread and gold fish crackers) from scratch and eliminate processed foods and foods made with refined white flour and sugar. I will keep a little bit of honey though. I know it is still sugar, but it is a more natural form of sugar and it can be more easily monitored. Ah, “from scratch,” that seems to be my new motto. I feel like I am rebuilding my life from scratch. It is going to take time to cook and bake everything myself, but I find it fitting. Things are changing. I’m spending more time at home and life is being lived at a slower pace. It’s a new phase of life, one devoted to resting and healing, and now I get to heal my son too. We are baking Whole Wheat Bread today. It is made with whole wheat flour and honey and molasses instead of sugar. It looks and smells amazing. If you are thinking “I can’t do that, it takes too much time.” I understand. Making this bread did take a few hours, but it is just like spending time in the afternoon watching a movie, but maybe better for you! I hope you have a great day. Feel free to comment if you would a copy of the recipes that I am using. I would be more than happy to share. Much Love, Danielle Hello My Friends,
How are you doing on your yoga? Good I hope. I hope you are enjoying it as much as I am. Sometimes I am hesitant to start, but I always feel better in the end. I'm averaging 5 days a week. How about you? I'm sorry I have not kept up on the every day, but these last two weeks have been challenging. I have learned valuable lessons these last two weeks though. I have been questioned. I have been taken outside my comfort zone and I have had to learn what I stand for, how to be completely comfortable with my physical self and who I am, and when to say enough. These are not easy lessons and not ones I would have chosen to have learned all at one time, but I did. The first thing that was questioned was the things I say to you. I don’t know if anyone is listening, but I would write if someone was listening or not. I am not writing this blog to make money, I am writing because when I was first diagnosed Esophageal Dysmotility and then with Crohn’s Disease I had so many unanswered questions and I felt completely alone. I didn’t know if there was anyone who was going through what I was going through. I didn’t know who to ask or where to find the answers. I was looking for hope, so I started blogging. And little by little I found people experiencing the same or similar things. I was able to answer other people’s questions and provide that hope that I was looking for, for someone else. That is why I write. I write because there is someone out there who needs to know that they are okay, even if things are feeling upside down, and that they are not alone. I love the questions I get. Keep them coming. I have a bowel disease…nothing is too embarrassing to talk about, so ask away! I also learned last week that the three immune-suppressants that I am on have wreaked havoc on my body. They have done their job and I am most definitely immuno-compromised. Do I mind? No not really. It goes with the territory, but I what I do mind is the skin infections that I am now prone to. Nice huh? Apparently, my good bacteria have been wiped out and I am susceptible to yeast rashes. I found this out when the weather turned warm and I had to go to the doctor for a lovely rash under my boob. Great place to have it right? I guess any place you have warm (sweaty possibly) skin to skin contact, you can get a rash. It’s no big deal. It just means I will be spending the summer embracing my “inner hippy” as my Doc put it. No underwire, lose tops, and flowing skirts all summer long. Apparently my body needs to breathe. I have to admit at first I was mortified. I was terrified to go to my son’s Preschool Graduation with a tank top bra as my only support, but once I got over it, it wasn’t that bad. People even commented on the shirt I was wearing. I secretly was thinking “please don’t look too close” and thanking God, probably the only time in my life, for giving me smaller boobs. Now that I’ve embraced this new freedom for a week or two, I still freak out a bit when I see people I know and am self-conscious, but I have to tell you I have never been more physically comfortable in my life. I have really had to accept my physical self, and that is really hard to do. Every day I ask my husband if I look okay. I even asked him what he thought about my new “hippy self” and he said he kind of likes it. He says I am freer and not so “prim and proper.” I had to laugh because I’ve been prim and proper my whole life. I kind of like my “hippy self” too. I feel free, like I can breathe and enjoy life. Life is joyous outside my prim and proper box. It is to be lived and it is awesome. The last thing that I learned last week was probably the most important. I learned how to say enough. I am not one to question the doctors when they suggest medication, especially if they think it is going to work. I always ask for the one with the least amount of side effects and trust their judgement. Well, the side effects of the Prednisone were not fully disclosed. I had no idea that not only does it affect your sleep, your weight, and your ability to concentrate, but it also affects your hormones and your emotions. I’ve done multiple courses of this drug and this last time it turned my hormones and my thoughts upside down. When started having anxiety and panic attacks every day and feelings of hopelessness, I knew we had a problem. I kept thinking “this isn’t me.” “I am going crazy.” “Something is wrong.” I got a hold of my doctor and my therapist (yes I have one and she’s great) immediately and asked “what is the side effects for Remicade and Prednisone? Something is not right.” Well come to find out, it was the Prednisone. So after a great phone conversation with my doctor we decided that even if the Prednisone was working for my arthritis, it is not the right drug for me and we need to start tapering off of it immediately. I can feel the difference already. No more anxiety attacks, no more feelings of hopelessness. The great part is I have almost completed all of the loading doses for the Remicade so it should be kicking in now and I should not need the Prednisone. What would have happened if I continued on the Prednisone? I don’t know, but I know that what was happening wasn’t okay and I needed to be the one to say “no more, enough with this medicine.” I learned that I am the only one who really knows my body. I know what feels right and what doesn’t and it is my job to speak up and be my own advocate. No one else can speak for me. No one else can speak for you. If they don’t listen the first time, keep talking. Speak up. Your life depends on it. Well, my little one just woke up from a nap and is asking to go outside. It is beautiful today and I think that that is a fantastic idea. I hear the garden and the sunshine calling. We have planting to do. Until next time my friends, Namaste. Much Love, Danielle First let me open by saying Happy Mother's Day to you moms out there. I hope you had the most wonderful day. Mine started out with my son bursting through the bedroom door singing "it's Mother's Day" at the top of his lungs. Both my guys we were so excited to celebrate that they were dressed and had the car started before I even had a chance to dry my hair after my shower. I was out the door barely dressed with slightly damp hair and a swipe or two of mascara, but I am not complaining one single bit. I had years of yearning to be a mom and many struggles before my son came into our lives, so I will not be ungrateful for the time I get to spend with either of my guys.
The last three days seemed to be like this...busy! The days seemed to be packed full of things to do. Yesterday was Methotrexate day too. I really don't like this medicine and how I am always feeling under the weather on Saturdays. But, even if my phone was ringing off the hook Friday, I was feeling sick Saturday, and every minute of today was spent with my guys, I still managed to take time each day for yoga. It's beginning to be a routine. Today I have yet to do my yoga session and I have been thinking about it all day long. I keep thinking "I have to get it in." Not in a stressing manner, but more like I know how important it is to my health and how good it makes me feel. On day 4 and 5 I continued with Hatha Yoga Happiness with Fightmaster Yoga. Even though I felt awful yesterday I really liked the session. It felt so good to breathe and stretch. The plank poses were awesome and I was surprised that I could do each variation. The heater kicked on half way through so instead of sweltering in a hot yoga session I opened the window slightly. It was so peaceful listening to the rain, breathing, and looking at the beautiful view of the forest. I think the peacefulness was why I enjoyed yesterday so much. Plus the theme was "enjoy the now," which I found to be perfect. It is late here tonight so instead of doing yoga for happiness, I am going to look for a night time yoga sequence. Something that will calm the mind and the body and help me get a good night sleep. My sleep tracker says I am getting about 6 hours. I find that I need more sleep than normal while in a Crohn's flare, so this could be attributing to my fatigue during the day. I know I won't get 8 hours of sleep tonight, but I am hoping for a restful night's sleep. I will check in again tomorrow and let you know how the evening yoga goes. I hope you have a great week. Talk to you soon! |
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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