"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
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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 |
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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