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    Why Dr. Phil’s Discussion of Clostridium Difficile Is So Important

    On Dec. 3, 2019, Dr. Phil aired an episode about the dangerous and life-threatening bacterial infection, Clostridium difficile ( C. diff). In the middle of my own personal battle with this terrifying superbug, I recognized the importance of bringing attention to this harmful infection. During the program, Dr. Phil interviewed a woman named Dayle who lost her mother and grandmother to C. diff. Dayle had also contracted the disease and shared her story of recovery. Dr. Freda Lewis-Hall, Pfizer’s Chief Patient Officer, was present to provide information about how C. diff is acquired and what we can to prevent infection. C. diff is a highly contagious bacterium. It causes inflammation of the colon and delivers an array of symptoms including diarrhea, abdominal cramping and fever. It can lead to serious complications or even death if not properly treated. During this program, Dayle and Dr. Lewis-Hall clarify common misconceptions about C. diff. In the past, doctors assumed C. diff could only be contracted by a stay in the hospital, nursing home or other healthcare facility. These are risk factors; however, Dr. Freda Lewis-Hall explains that today, we know many C. diff infections are “caught or acquired” in the community. C. diff is spread through fecal matter. This means an individual can potentially infect themselves by touching contaminated surfaces, such as doorknobs, toilet seats, shopping carts, etc. Dr. Lewis-Hall educates us on how to protect ourselves from contracting this infection. It can live on surfaces, including fabrics, for long periods of time. Proper hygiene is imperative. Washing your hands with soap and water is critical as alcohol-based sanitizers will not kill C. diff germs. Dr. Lewis-Hall confirms the disease is more common in elderly patients, but anyone can be affected. She emphasizes that recurrence of this   disease is not uncommon. C. diff bacterium is stubborn and tenacious. In many cases, it can and will return multiple times. In fact, Dayle was a young woman when she acquired C. diff. She experienced a relapse before finally reaching recovery. Other risk factors include antibiotic use, which can upset the balance of good bacteria in our gut. (Strangely enough, the treatment for C. diff is antibiotics.) Dr. Lewis-Hall stresses to only “take antibiotics as directed” by your doctor. I was pleased that Dr. Phil addressed Clostridium difficile on his talk show. However, the public needs more insight into prevention and the recovery process. Antibiotic prescription and use are key points which I believe need more consideration by patients and the medical community. Healthcare providers need to reevaluate when and how antibiotics are prescribed in order to prevent future complications, including C. diff. As patients, we must take responsibility for ourselves and question medical professionals, working with them before deciding or agreeing to a treatment plan. Oftentimes, there are alternative solutions that may work equally as well or better. “Taking antibiotics as directed” is excellent advice…except when it’s possible that antibiotics are not needed in the first place. Some patients will contract C. diff, receive treatment and recover without further complication. For others, restoration of gut health and digestion is a nightmare which can take months or even years to reclaim. Post-infectious irritable bowel syndrome (IBS) can settle in, producing many of the same symptoms as C. diff. Oftentimes, dietary and lifestyle changes are required to help with the healing process. Numerous patients need several courses of treatment and even then, the infection still returns. Fecal matter transplants (FMTs) or surgery may be necessary to recover. I am currently fighting to recover from a C. diff infection. I am not a geriatric patient. I had not taken a course of antibiotics or spent time in the hospital when I was diagnosed with C. diff.  For these reasons, I felt recognized and validated by Dr. Lewis-Hall’s information regarding  community acquisition of this illness. I have been on multiple rounds of antibiotics and am still working on the recovery process. C. diff is an obstinate and dangerous superbug. Dr. Phil and his guests furnished crucial information to viewers regarding this bacterium. Although the clip was short and to the point, it highlighted many important aspects about how this disease is acquired or spread and worked to bolster public awareness. To watch the full segment on Dr. Phil, click here.

    Katie Boateng

    Training Myself to Smell as a Person With Anosmia

    I have acquired anosmia, a condition which means I have no sense of smell. None. No really, it’s a thing. To help with acquired anosmia, there is something called smell training that helps some people recover their sense of smell. When I started smell training in earnest in 2018, it had been a solid eight years since I became an acquired anosmic. Most likely you haven’t heard the word anosmia before; it’s a little-known condition that impacts around 3 percent of the population. I became anosmic due to my doctor’s best guess of an upper respiratory infection that damaged my olfactory neurons. I proceeded on a medical journey to figure out what was wrong with me. During that journey, my primary care provider had me try flonase and prednisone, both steroids. I also pursued an MRI and a CT scan to rule out any brain injuries that could be causing my anosmia. Both of those things came back clear. Finally, I went and consulted with a neurologist who also informed me there was nothing “wrong.” Having ruled out any causes that could possibly be fixed, I was then left alone to deal with my new reality. Having anosmia was strange for me; no one had heard of it before. When I shared my condition with people, their typical reaction was, “are you sure you can’t smell?” At that point in my life, I made the unconscious decision to ignore my anosmia. No one had heard of it, the doctors couldn’t find anything “wrong” with me and I had no other symptoms. I have a theory that anosmia is not well known because it is invisible. You can’t tell by looking at me that I have no sense of smell. If no one could help me and no one knew anything was wrong, the easiest thing for me at that time was to not focus on it. Cut to 2018 when my husband and I moved from Idaho to New Jersey to pursue a career for him. I was home and looking for a job. I’m not very good at being bored and I tend to need to be doing something at all times. I decided that if I was going to be home looking for a job, I should start a podcast about having anosmia. There were no podcasts about smell disorders at the time. I’m a big fan of listening to podcasts so this felt like a natural path for me to pursue. I started the Smell Podcast and by getting more involved with my condition, I had to really start paying attention to it. It’s a lot easier to ignore something that impacts me negatively than it is to deal with it. By paying attention and looking at it, I had to deal with all of the emotions. The impact of anosmia had snuck up on me here and there since it happened in 2009, but I did a masterful job of not giving it any air time because it was so upsetting. On the Smell Podcast, I interview people like myself who have olfactory disorders. Turns out there are a lot of us. Anosmia is one of a few olfactory disorders, including parosmia, phantosmia and hyposmia. People with all of these conditions have been featured on the podcast. With my podcast, I started to learn a lot about available resources for people with anosmia, including smell training. Smell training is just what it sounds like — you train your nose to smell things by smelling them. There are four scents that are generally recommended for smell training: clove, eucalyptus, lemon and rose. From what I’ve learned, these scents are arbitrary, but due to the nature of scientific research, they’ve been replicated time and again because that’s how science works. You have to be able to reproduce results. You take your scents and you spend 30-60 seconds smelling each one in the morning and again at night. Easy, right? Wrong! Smell training is emotionally exhausting. You have to go to your jars of smells each morning and night and visualize the smell you want to smell. Since I have acquired anosmia and I used to have a sense of smell, I have smell memories which are helpful, except now they’re fading with time. You visualize the item that produces the smell, for example, think of a rose, then think really hard and try to remember how a rose smells. Growing up, my mom planted rose bushes right outside our bedroom window, so I try to think of those specific roses and how delicious they smelled. I would even take the petals at times and smash them in my hand and I can kind of remember how that smells. For lemon, I like to visualize cutting a lemon and the thought of a big pitcher of lemonade also often pops into my brain. For clove, I think of roasted ham on Christmas day and I imagine myself helping cook it and pulling it out of the oven. My mom used to put little cloves into the ham. Eucalyptus is a bit tougher since it’s not an item we typically have in its raw form. I imagine chewing gum that has a eucalyptus scent. This process repeats itself every day and it serves as a reminder for me of my loss, that I’m missing something and it makes me really sad. Smell training is a battle for me. I know it’s good for me, but I don’t want to do it. When I started smell training in earnest in 2018, I had competing expectations that it wouldn’t work and that my smell should come back right away. Think about how unrealistic that is. I had been ignoring my sense of smell for eight years, not actively engaging in the act of smelling things at all since I can’t, yet I was frustrated that a few weeks of smell training wasn’t working. Imagine not using your arm for eight years. It would become atrophied, shrink and shrivel, and not work at all anymore. If after those eight years of not using your arm, you decide that now it’s time to give it a go again, you have to remember it’s not going to work how it used to. You would have to start off small and build your muscles back up. That’s how smell training and the idea of getting my sense of smell back is for me. It feels like this insurmountable mountain I’ll never cross. In Boise, Idaho, around where I grew up, there is a popular hiking trail called Table Rock. It has an elevation gain of 895 feet and is a 3.7 mile loop. The elevation gain happens pretty quickly and every time I go to hike it, it feels like it’ll never end and I’ll never get to the top. But, I do get to the top every time and that feeling of pride in doing something hard is how I want to approach smell training and my anosmia recovery. To summit Table Rock, you have to start with a step. The same should apply to my battle with smell training. In order to get anywhere, I need to keep taking steps.

    Community Voices

    What pisses me off... #Autism #MentalHealth

    Whats been on my mind...recently there has been another case of measles and that disease alone can kill a child. So you have the uneducated people who blame the MMR shot is the cause of autism. There has been many studies done that prove that the vaccination doesn’t cause it. So the mother’s who don’t vaccinate their kids believe that the worse thing that could happen to their child is possibly getting autism. Um here’s a crazy idea .. what is worse all the children dying because of not being vaccinated which was 500 and some or a your child being alive... #CheckInWithMe #Depression #Anxiety #Education #MentalHealth #MoreDiseases #ADHD

    3 people are talking about this
    Community Voices

    Pretty weird but kinda real

    I always think humans , animals +anything in earth is just a copy of the other
    things just repeating it self over and over ,it never changes ,cant get why is it this way , for example if ur struggling it is someone’s time to be in luck if its ur time it’s someone’s shitty days as well as ur mental health if u feel great someone’s having hard times we’re all the exact same ,
    changes moving in turns between us u cannot stop it cause its not ur turn yet , when the turn comes u’ll go to another changing nothing is really your choice .
    It doesn’t make since it is boring and if u keep thinking about it u might go crazy
    u can not discover the reason behind that ur not going to change the turns cuz you are under one of the turns while ur doing it ! and when u go crazy u’ll be one of the ppl who got crazy trying to explain something natural.?

    #MoreDiseases #Depression #MentalHealth #Autism

    2 people are talking about this
    Julie Keon

    Reflections on a Future Without My Medically Fragile Child

    One day, this life we live will cease to exist and the future we dread will come to pass. One day, my arms will be empty. Arms that held you from birth until death. Every cell, every muscle, every tendon will recall the weight of you in my arms. One day, I will no longer hear the sound of your wheelchair on the creaky hardwood floors nor the beeping of the feeding pump. The silence will be deafening. One day, there will be no need for night nurses and caregivers and I will wait for the sound of the door to open but it never will. One day, I will stubbornly have one foot in the land of the living and one foot in the land of the dead. I will refuse to let you go completely, because to do so might be the end of me. One day, I will sit in an empty house listening to the sound of my breath and I will marvel that my body carries on even though I feel dead inside. One day, my beating heart will be the only indication that I am still alive. One day, I will have to relearn how to be in a world that I left behind so long ago. I will return to it kicking and screaming as the world I have known for so long begins to fade into the past. One day, I will be forced to relinquish my identity as your mother. I will always be your mother but not in this time and place. One day I will awkwardly answer the question, “Do you have kids?” by stumbling over my words before blurting out, “Yes, I once had a daughter.” One day, hopefully many, many, many days from now, I will say a final goodbye to you, my darling Meredith. One day, I will have no choice but to learn to live again without you. Chapter 42 from “What I Would Tell You: One Mother’s Adventure with Medical Fragility.” © 2017 Julie Keon

    Aleigha R

    The Ugly Truths of My Illnesses Shouldn’t Be Taboo

    I haven’t written in, well, too long. I think it has been due to an assortment of reasons… The fact that my condition has and is progressing in a horrible sort of way. That I am too drained, too tired, too dead inside to do much of anything despite what the up-kept image reflects on my Instagram. The fact that it is a struggle for me to articulate my thoughts or keep up in a conversation leaving me feeling lost in the background until I end up retreating altogether. However I am, on the clear days, going to write anyway because I believe strongly that I deserve to be heard, that the battles I am fighting and the life I have been given need to be communicated so maybe one day I’ll get to live in a world that isn’t so disturbed by the sight of broken bodies and no longer shies away from the discomfort that comes with conversing about the ugly truths of illness. Because… Two years ago, a doctor told me my sudden pain and decreasing health was all in my head, but here I am still in very real pain, battling some very real illnesses. A year and a half ago, I lost some of the people I considered to be my closest friends because they could not understand the ailment that had stolen my once healthy body and continuously battered my overwhelmed and grieving mind or the horrific side effects that changed me forever. A year ago, I found myself screaming into the void that is our healthcare system to find help for my rare diseases with nothing but radio silence echoing back towards me. Six months ago, I sat at the Mayo Clinic excited for all the resources they could offer me, but instead I was greeted by a preoccupied doctor who jetted off to Florida in the midst of my stay. I left brokenhearted with a massive bill my family had to pay out-of-pocket. A few months ago, someone I trusted and loved told me I was faking. We haven’t spoken since. A week ago, I got called an attention-seeker for publicly taking the meds that allow me to function. I received the same sort of reaction for sharing my medical journey online. The other day, some of my own family members made fun of my short, fuzzy hair that is growing. Little did they know I had been losing sizable chunks, clogging the drain each time I showered before I made the decision to shave my head to raise money in honor of another little fighter who resides on the west side of my state. Ellie Walton is 3 years old, had 17 surgeries and has been through more than any toddler should ever have to. Last night I cried for hours to my mother because there are days when the pain of living the life I do seems never-ending and lonely. Because watching all of my friends graduate and move on into their lives with the gift of health was, for a minute, more than I could bear. I cried for my cyst-covered kidneys, my endless pain, the constant infections, insurance coverage denials, my weakening muscles, failing digestive system and lack of treatment. I cried because I am 22 and I peed my pants in public the other day due to my constant muscle spasms. I cried for my past life and my dreams that were lost with it, but I also cried for my future because what will I do? How will I support myself? Who will take care of me? I don’t want to live in a world that turns their heads from the lives that so many are forced to live. I shouldn’t be made to feel ashamed or less than or like a burden for needing help or talking about my struggles. Illness isn’t always smiles, life lessons and happy endings. It can also be full of humiliation, loss and hopelessness. It may never be “normal,” but it can be accepted because when it comes down to it — m y truth, even the ugly parts, shouldn’t be taboo. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

    Kasey Anderson

    When You Feel Helpless as Your Child Faces Severe Medical Issues

    This is something I’ve thought about writing down a million times. I usually stop myself because I’m not sure I can get through the details. I usually try to make my posts fun and relatable, but the reality of my life feels like it is anything but relatable. I assume that the general consensus is that being a parent is hard work. When you watch your child sleep at night, it really is like looking at a piece of your soul right before your eyes. You imagine the life they will have, you make plans for school, you try to teach them to make friends, to be fair, to help them hone and develop the skills that will allow them to be the kind of individual who can positively impact the world and those around them. All the while you have a front row seat to their happiness, as well as to their hardships. Watching your child struggle physically, emotionally, mentally and otherwise can be a painful and helpless feeling. Kasey and her son Robert as a newborn. Before Robert was born, we knew there was a chance he would have some medical issues. We could not know how severe they would be until he was born. The seedlings of fear and worry set in early. This month he turned 3. He is a phenomenal little boy. He is funny, clever, a great learner and the best little companion. He has also had three major surgeries (as well as many minor surgeries), countless infections, hospital admissions, therapy, doctor’s visits, sick days and has never eaten a piece of chocolate cake. He had a feeding tube placed when he was 1 year old and continues to rely on it 100 percent. It is really difficult. There are many, however brief, moments when I feel as though I have clarity. I can say to myself — and believe — that it is going to be OK. I can look around and feel blessed and gracious for the life we have. I can watch him play and not think about what his future holds. These are very precious to me. I hold on to them so dearly. I keep them in my pocket to grab on to whenever I forget. But sometimes I forget. And that’s OK. For much of the past few years, I’ve felt as though I’m treading water. I’m in the middle of the vast ocean. There are storms that come and go, and all the while I’m desperately trying to keep my head above water. And I do. And it’s hard, but I do it. Some days I see a small island. I swim to it. I lay down and feel the extraordinary relief that comes with the realization of how exhausted I’ve been. It gives me hope, and I am revitalized to swim again. I believe our lives are meant to try us — to bend, manipulate and work us into the best version of ourselves. This is an uncomfortable experience. If you were to ask me how my life has changed the most since having Robbie, I would say this: Before Robbie, I was looking at life through a telescope. I would constantly think about my (me, me, me) future. Get to A to get to B to get to C. Far-reaching, but very narrow. In loving and caring for Robbie, I’ve learned what it means to survive, emotionally and physically. I now feel like I can navigate life in the same way you would navigate a forest with a compass. I am aware of all directions, but I know that to continue heading north, I can only take a few steps at a time before I have to stop and re-examine. For me, this has proven to be a much more manageable and hopeful path. I think if we let it, life can make us feel that everything is dire. I can’t believe that is how it is supposed to be. We are supposed to know happiness, to know joy, to laugh and to laugh often. The heavy challenges we bear may not disappear, may not become less important, but they can be lightened. And I believe they can be through an honest quest for joy. So when you make it to your island, have a piña colada. There will be plenty of time to swim later. Kasey and her son, Robert. Follow this journey on So There’s That. The Mighty is asking the following: What’s the hardest thing you deal with as someone with (or with a loved one with) a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Life After the NICU Might Not Get Easier, but I’ll Get Stronger

    Being a mama of six kids, I feel like I just can’t cry. I don’t have the time to sit and cry. No matter what is going on, no matter how bad things get, I can’t cry. If I cry, I break. If I break then I’m done. And when I’m done, the day is done for me and for everyone else. And now that I am home alone with the kids, I can’t break. I am all they have. So I feel like I really can’t cry. I was talking to another NICU mama the other day. Her son was in the NICU a few years back. And her son went through everything my son is going through now. We talked about how other parents don’t always understand, such as parents who have never lived in the NICU for weeks and months at a time, or have never made life insurance and funeral plans for their child, or have never wondered and prayed and held their child with the thought that this may be their child’s last breath, heartbeat, day and night on earth. I asked her if it gets easier as time goes by. And she chuckled and said no. I hoped she was joking, but she was serious. She shook her head again and said, “It never gets easier.” She said, “You, as the mother of a warrior, will get stronger.”I think I may have had a slightly sad look on my face because she then started talking about how it is an amazing journey. Lots of good days. Lots of fun days. Lots of days where he is not sick. But the times when he is sick days or weeks at a time become familiar. They even become a routine of some sort. I told her that I already have those days, days where there is no way for me to comfort him. She continued saying that the wait for a kidney transplant can be less of a roller coaster than the NICU. But the transplant roller coaster can have higher drops and scarier turns. She said she learned to just hold on for dear life. She said that as time passed, as the days flew by, as the weeks and months continued… life became a routine. Life was still hard, but she learned to adapt. She learned to read her son and know if he was going to have a bad day or a good day. Despite of how hard life was, she got stronger. Life stayed the same. Nothing changed. Her son was sick and might not get better. My son might not get better. Currently there is no cure for kidney disease, and getting a transplant might be more like being in remission. But her son got stronger. She got stronger. And I know I will, too. I know my son will, too. It will never get easier. You will get stronger. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

    To the Moms Who’ve Been Told Your Baby May Never Take a Breath

    March 20, 2014 is the day I will always remember. It was the first time my husband and I were told there was something wrong with our son. I remember everything we were told. I remember every word the ultrasound tech said. I remember the instant pain I felt in my entire body. The shock of knowing the dreams I had for this pregnancy were not going to come true. The stabbing pain in my heart after hearing our son, our only son, is sick and may never be born. Throughout the year, there were many times I didn’t know how I was going to survive. I didn’t know if I would ever come out of my depression, my sadness, my pain. I didn’t know if my son was ever going to be healthy and happy. We were told over and over again that he may never even take a breath. It did not look good, and his prognosis was fatal. How am I going to get through this? But here we are, a year later. Other than dialysis, our son is pretty healthy. (I am chuckling to myself saying “other than dialysis,” because this machine, this dialysis machine is what keeps my son alive on a daily basis), but other than that, he is pretty healthy. Especially compared to other babies with kidney disease. I have been reflecting back on this year for a few weeks now. And I want to share my opinion and advice to other mamas who have recently been given a prenatal diagnosis. Since starting Made For A Miracle, I have wanted to share my own list of what to do when you are newly diagnosed. I hope this helps someone else. So, when you are first diagnosed, this is what I think you should do: 1. Breathe! You need to breathe. I know you are in shock and you are holding your breath, but let that breath out. Inhale. Exhale. 2. Cry if you need to. I remember walking out of the ultrasound room, calm but in shock. I smiled and scheduled another appointment at the front desk. I stood in front of the elevator with my just-as-shocked husband. There were other people in the office, and I didn’t want to scare any other patients. I stepped into the elevator, the doors closed and I lost it. I cried. I cried loudly and uncontrollably. When the doors opened, my husband helped me step out of the elevator. He held me and just let me cry. I couldn’t control my tears. I couldn’t control the moans coming out of my mouth. But I only cried for a few minutes. That was enough for me. 3. Have that talk with your spouse. Make a pact. Make a promise to each other. Let each other know, in clear words, that no matter what happens, you will stick together. Sit right across from each other, hold hands and sincerely have this talk. Understand that a child’s diagnosis, even a prenatal diagnosis, is going to do one of two things: either bring you closer together, or tear you apart. Understand that it is you two in this. Only you two. Support each other no matter how the other handles anything that comes your way. Talk to each other. Confide in each other. Stay open with your communication. Understand that the other handles things much differently than you and support how they choose to deal with. Give whatever you can to the other — you are partners in this. Remember that. 4. Research. People used to tell me, “Don’t Google! Google is bad!” But I had to know. I had to know exactly what was going on with my son. I needed to know the statistics. I needed to know the prognosis. I needed to know answers, options, results. I needed to know what doctors were going to do. I needed to know what other doctors have done. I needed to know what doctors could do. And I needed to know what they will do. I mostly looked at scholarly articles from other children’s hospitals. And when we went into our first Maternal Fetal Medicine appointment, I had a list of questions and options ready for the doctors. I am proud to say, knowing what to expect and knowing what they were talking about really helped us through the rest of the pregnancy. Doctors knew we weren’t going to let them tell us, “Oh sorry, it’s too late.” Um, no! You can do this, this and this. Thank you! 5. Pray. And pray specifically. Our son was given less than a 10 percent chance of surviving the rest of our pregnancy. All I had was hope, and I prayed like I have never prayed before. But I never knew to pray specifically. I just prayed for my son to be born. I prayed for him to be alive. But I didn’t know to be specific with my prayers. I should have prayed for my son Matthew’s lungs to be healthy, for his kidneys to have more than 50 percent function, for the pregnancy to be able to continue for at least two more weeks, for Matthew not to need dialysis, for him to be born healthy enough to have an almost normal life. I should have prayed specifically, step by step, of what I wanted to be. 6. Have faith. My husband would reassure me that all we needed was faith the size of a mustard seed. There was so much negativity about Matthew’s prognosis, it felt like all we had was that mustard seed. And I held on to that mustard seed of faith. I held it in my hand every day. I would picture this little tiny seed in my head, and I thanked God for it. I relied on this little seed of faith. Faith was the only little positive thing we had. 7. Write it down. Write it all down. Buy a journal, a notebook, a composition book and start your journal. There were days I couldn’t write. Days I couldn’t express what I felt. So I would write words. There are so many pages in my book that I just have words and doodles. I wrote scriptures down, quotes I had heard, songs that were playing. I wrote it down. Although still to this day, I have not opened “those” books. I am glad I have them. Maybe one day I will. 8. Enjoy life. Yes, I said it! Enjoy your pregnancy. For me, this was one of the hardest things to do. How can I celebrate this pregnancy? How can I celebrate life when it’s like this? It took me about 10 weeks to learn this, but I finally did. I began to thank God for these twins. I was so grateful to believe Lord gifted me with a son. That no matter what happens in the future, I have a son. I have a daughter. I have twins. And I love them with everything in me. And although they weren’t born yet, I needed to be happy and give them all the joy and strength they need to get healthy and strong for themselves. I took photos of my belly. I took photos of the kids touching my belly. I took video of their kicks and their movements. Like my other kids, I was going to do anything and everything that made them happy. My kids and I would sing to them, talk to them and read to them. Both my mom and mother-in-law planned baby showers to celebrate life. I didn’t realize it at the time, but I know now that was confirmation for me. Unfortunately I realized this too late, but those last two weeks that I carried them were beautiful. Celebrate life. 9. Did I mention to breathe and cry? Because you need to do these two things. Know that it is OK to cry. Take those deep breaths. I know, easier said than done. But it is something I wish I did a lot earlier in the diagnosis. I wish I could have cried more. I wish I could cry now. I still catch myself when I am about to cry, and I stop myself. It is something I’m still working on. It is OK to let go and cry. Mourn the normalcy that you once knew. Life will be changed forever, and it will never be the normal you have always known Accept the new life I believe God has blessed you with and move forward. #10. Believe that a miracle might happen. If your baby defies the odds, you really won’t be able to breathe! They will take your breath away. They will make you speechless. Your baby will be much stronger than you will ever have to be. Your baby will deal with things most adults never will. Know and understand to your very core that your baby is a superhero. You will never ever understand why you or your baby had to go through the rough start. You will never know why or understand why your baby has this diagnosis. But I believe when you let go of all your thoughts and your pre-diagnosis hopes, a miracle can be possible. You, your spouse, the nurses and those doctors might be witnesses to what can only be described as a miracle. I don’t know why we went through what we went through. I don’t know why we are going through what we are going through now. All I believe is He holds our tomorrow. I never knew how powerful prayer and faith were until it was all I had to rely on. Pray specifically and hold onto your seed. Have hope. Have faith. And know what is going on. Stay informed and make sure those doctors know that you expect them to do everything in their power. That if there is one glimmer of chance, grab hold of that chance, that positive percentage. Editor’s note: Because of the sensitive nature of this story, we have made a few more edits after publishing. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    To the People Who Ask Me What It’s Like to Be Around Food When I Can’t Eat

    The question I seem to get all the time is, “How does it feel to sit at the dinner table while everyone else is eating, when you can’t eat?” I swear my answer is almost always the same, and I have it memorized by now. Honestly, it does not bother me as much as some think, but it is different for every person. My parents have never forced us to sit at the dinner table if we don’t want to. Typically for me, I spend that time in my room doing homework or I go into the shower so I can’t smell the food being cooked downstairs. Family dinner is not as big of a deal in my house as it is for some. Out of the six of us who live in my house, a third of us are unable to eat any sort of meal. My parents have tried to instill the idea that food is not a central role in our life. However, look at just how much food is involved in our daily lives — b illboards, advertisements, Halloween candy, Thanksgiving, peanuts at a baseball game, dinner dates, birthday cake, Easter eggs, Christmas cookies, any sort of party, and even going to the movie theater and getting popcorn to enjoy are all trends in our society. Although the world needs food to survive, we also need to realize just how big of a deal food has become in our lives. What if you had to sit in the lunchroom at school and watch everyone eat pizza? The catch is that you can’t eat it. You can smell and see the pizza, but you are only allowed to sit there and watch the others eat. The situation is similar to putting a treat out in front of a dog but not allowing them to eat the treat. There are many situations when I’m unable to avoid sitting down at the table while others eat. While being around food doesn’t bother me as much as some, it is still challenging for me. No matter what the situation is, it can be difficult to watch everyone do something you are unable to do. For me, that something would be eating food. Being unable to eat food is not only about the physical consequences of eating; it is also about the social and emotional aspects that come along with it. Although I may want the food, I just can’t have it. If I choose to “cheat” and eat food, there will certainly be consequences, and I don’t mean sitting in timeout for 15 minutes. Because of my chronic illnesses, the consequences consist of nausea, vomiting, abdominal pain, cramping and I could go on and on… The only times I cheat and eat food is when food is in front of me as part of a social event. I do have more self-control at my age to know that I can’t eat the food in front of me because it will make me sick, but I have to admit that I can’t always handle that craving of wanting food so bad. I know it will make me sick, but I do it anyway. Most of the time I don’t allow myself to do that, but sometimes I can’t wrestle in my mind what’s worse: the physical consequences of eating food or the mental consequences of watching the world do something you would give anything to do. If it’s hard enough for me to sit there, imagine being several years younger than myself. My brother who also has chronic illness is only 10 years old and has never truly been able to eat food ever. I can only imagine what war goes on in his head — t he mental battle between doing what’s best for your health and how you feel but also struggling with the mental realities of what it’s like to live a life without food. I am thankful to live in a household that realizes food doesn’t need to be the central aspect of our lives. I know I can come home and have a place where I don’t have to worry about food. I understand we are unable to make the world change because of how I and others have to live, but I wish people could become more understanding and compassionate toward those of us who have to live a life without food. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.