Becki Parker

@becki-parker | contributor
Becki Parker is a new Crohn’s Disease fighter, just learning her skills in life. She is a permanent ostomate, receiving a lifesaving ileostomy in 2015. She loves to support her fellow spoonie and find a way to share her story, with just a touch of her sarcastic humor.
Becki Parker

Crohn’s Disease: Comments by Medical Professionals Were Hurtful to Me

As we age, I think we build a mental library of “what the hell” moments. Through my medical journey, I’ve stared blankly at my fair share of people, taking in every detail for my WTH library. Lately, those moments have been the fuel for my anger. They make me wonder if the people we go to for help forget that we’re intelligent, competent or even human. Since April, my ileostomy stoma has been the Sheldon to my Leonard. Struggling to live with him, but unfortunately can’t live without him. However, my version of “The Big Bang Theory” lacked the laugh track and genius best friends. I’ve been struggling with intense, sharp pain and mechanical malfunctions on a daily basis. Imagine the stinging pain of a scraped knee. Amplify it times four and place all that pain in your guts. Finally, throw in some obstructions and strictures, sprinkle in a few ileuses and bake at 350 degrees for 30 minutes. You’ve successfully made a pain that no one believes. “Pain in your stoma? You mean around your stoma.” “That’s not possible. Intestines have no nerve endings; they can’t ‘feel’ anything.” Six months of ER visits, doctors’ appointments, pain, nausea, bleeding, the works, and these are the answers I get? I don’t have a medical degree, so how could I possibly understand my body? How could I accurately pinpoint the “discomfort” I feel within the body I have lived in for 25 years without that expensive piece of paper? Silly me. “You look better than the last time I saw you, so it must not be that bad.” No, you didn’t read that wrong. Yes, those words came from a medical professional. They were spoken before and after I was left in an ER room for three hours, waiting on a doctor who placed me on his lowest priority due to the above statement to even evaluate me. I sat for six hours before it was decided the specialists that could help me left two hours before my discharge. The next week, an exam found multiple ulcers terrorizing my ileum. They were the reason behind my pain. Pain, not discomfort or irritation. Pain. The ulcers were real. They were there. I had proof! I was finally going to get help! Pfft. Even with the exam and four months’ worth of CT scans showing the latest damage done by Crohn’s disease — nothing. “Give it time. It takes time to work.” “But you’re gaining weight, so that’s good.” How much more time can I give something when my body is destroying itself? What am I supposed to do in the mean time? Ignore the bleeding? Laugh off the scream-worthy pain? Did you forget you’ve placed me on medication to up my appetite? And that the majority of my other pills have weight gain as a side effect? Are you kidding me? I understand medical professionals may just see me as a file in their office. I know they don’t have to live with this body or cohabitate with me — living with the constant reminder that something’s not right. But I am a patient. I am a human being. I am a 25-year-old adult who had to place her professional and educational aside to care for this debilitating disease. I am a person who wakes up every day too nauseous to move because her guts are too inflamed to digest anything from the day before. I am stuck at home, foggy from the fatigue, pain and loads of medications it takes to even get me out of bed. I am the person people forget. But remember, I am so much more. Before you feel the need to correct me or hurry to get me out of your office, remember my life revolves around all of this. We may only visit for a few minutes each month, but there are 43,800 minutes that I must survive until we’re sitting here again. In those 43,800 minutes, 35,000 of them may be spent in distress. That leaves only 8,800 minutes to be a responsible adult. I have to cram to make an income, care for my loved ones, uphold familial and social responsibilities and, hopefully, make time to care for me in that time. That’s only 146 hours out of the month — that’s 20 percent! Any of the above mentioned quotes make me wonder if you think I’m only worthy of 20 percent. Those “what the hell” moments make me wonder if you forget we are equals, merely separated by expensive certificates and a faulty immune system. Yes, you’ve got the know-how on what a body does. But I’ve got the know-how on my body. I know when something is wrong, where it’s wrong and how important it is to remedy it. And it is important. Period. It’s important to help me achieve stability. It’s important to explain a game plan and for us all to agree on it. It’s important that we’re a team working toward the same goal, and that I can trust you. You’re trusting me to be honest and give it my all. I need to trust you to sense my urgency, acknowledge my pain and not be the head author in my WTH library. Because I’m sure that’s one library you would not want to brag about at the next Christmas party. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Becki Parker

The Mental Health Effects of Having POTS and Crohn's Disease

If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK. How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind? How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake. I’m constantly on my game. I’m constantly “on.” I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it. I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done. Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee. Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day. The amount of guilt sitting on my shoulders can be suffocating. The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it. I’m angry. I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person. There’s a frustration with my own body. Why can’t you get it together? Why can’t you stop attacking yourself? When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration. Why can’t I just deal with one thing? A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses. It is infuriating, as it hits you from all sides. *** Once I dig past the anger, I find the real problem: fear. We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again. I’m afraid of the hopelessness that finds me when I think about all of this. I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom. I’m 25 years old. Will it still be like this when I’m 40? Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this. These fears nag at me every day. They sit in the shadows, waiting to attack. When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger. These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in. It takes superhuman amounts of energy to push through. I have learned to acknowledge these emotions and set them aside. While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself. To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues. It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.  

Becki Parker

How to Be Friends With a Person With Crohn's Disease

I’ve been out of the game since February. I’ve been a hermit, trying to do my best every day. And in seven months, my circle of friends has shrunken more than you can imagine. And for the first time in seven months, a friend came to visit. A friend knew it was a rough day, and instead of changing plans or canceling, she picked up lunch and came to me. It was like winning the lottery! I found a four leaf clover! I finally discovered who, in fact, let the dogs out! After two hospital visits in February, both lasting almost a week each, it was decided that stepping down at work was the best choice for my health. I had just fought off a large infection and Crohn’s disease was rearing its ugly head yet again. I failed another medication and my day-to-day life began to circle around the bathroom and my bed. The pain and nausea were uncontrollable and built the prison bars that trapped me at home. For a while, my phone stayed as busy as always. Family continued to check in, friends still took time to drop a line. But as my luck would have it, my illness got worse. I was too ill to do my hair, let alone get out of the house. I would make plans and have to reschedule. I would read a text, but in a brain fog haze, forget to respond for hours or even days. I rarely left the house, virtually becoming the invisible woman. And as the old saying goes “Out of sight, out of mind.” Then slowly, the phone stopped ringing. The “Don’t worry hun, we’ll find time” or “Take time to rest, we’ll still be around” were replaced with the chirping of crickets. I started to wonder if I fell off the face of the earth, or if I was the sole survivor of some nuclear holocaust. I became moody and the depression I was refusing to acknowledge overtook my entire life. My poor family… I was hell to be around. Where were all of the people who used to enjoy my company? They were right beside me enjoying the good times. Now, if it weren’t for the occasional Facebook comment or “like,” I would second-guess their existence. Now, now, now… not everyone can be grouped into this generalization. I have a few tried-and-true friends who make the extra effort. They continue to try to make plans when I just can’t make it. They reassure me that they are there when I’m scared they’ll disappear. Their names are always at the top of my recent calls or messages lists. This summer, I have thankfully added to my circle of true friends. I have met a family that I adore. They are everything someone could ask for. Fun, laid back, supportive, comforting, they’ve become extended family. After a rough day of medical mishaps, they welcomed me into their home, no questions asked, and after a hug and a quick teary-eyed run-down of what happened, helped me forget about my worries.  They’ve fed my family, welcomed us with open arms, and helped in any way they can. They don’t turn away when I’m having a bad day and they don’t call it a night when pain or nausea creep up. They do what very few have: They ask what they can do to help. And their kids? Amazing. Remember way at the beginning of this whole shebang when I mentioned that someone brought me lunch? That was their daughter. A young woman had the maturity and compassion to find out what I could tolerate, bring me lunch, and chat. She did something many of my friends had never done, many of them double or even triple their age. She knew it was a painful day, and knew some company could be just what the doctor ordered. I cannot find the words to even describe what I felt: loved, cared for, human. I felt human. I wasn’t a porcelain doll, too fragile to be handled. My pain didn’t make me someone to be avoided. I was just a girl having lunch with a friend. As an introverted bookworm, it’s hard to make friends. Add a chronic illness to that list, and it’s been damn near impossible. Befriending someone with a chronic illness takes extra effort. It requires a higher level of understanding, compassion, strength, and diligence. It’s a lot of last-minute changes and hanging out in your pajamas. Some people just aren’t cut out for that kind of friendship. They are there for the nights out. But the minute “hanging out” revolves around a hospital or home one too many times, the offers to hang out stop coming. Texts go unanswered. The only connection lies in the form of Facebook likes or comments. I have many “friends” I only see through a screen. My texts go unanswered, attempts to make plans go unmade. But not all hope is lost. People willing to stick through this wild ride with you are hard to find, but they do exist. I’ve been lucky enough to find a few that are right by my side. I am not a “Crohn’s friend.” I am a strong, supportive, funny, sarcastic, creative, caring, eccentric friend who just so happens to have Crohn’s. It may make me a bit unreliable. I may need a special menu or easy access to a restroom, but all of these extra quirks make me an even greater friend. And I deserve the same in return.

Becki Parker

The Mental Health Effects of Having POTS and Crohn's Disease

If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK. How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind? How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake. I’m constantly on my game. I’m constantly “on.” I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it. I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done. Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee. Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day. The amount of guilt sitting on my shoulders can be suffocating. The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it. I’m angry. I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person. There’s a frustration with my own body. Why can’t you get it together? Why can’t you stop attacking yourself? When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration. Why can’t I just deal with one thing? A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses. It is infuriating, as it hits you from all sides. *** Once I dig past the anger, I find the real problem: fear. We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again. I’m afraid of the hopelessness that finds me when I think about all of this. I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom. I’m 25 years old. Will it still be like this when I’m 40? Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this. These fears nag at me every day. They sit in the shadows, waiting to attack. When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger. These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in. It takes superhuman amounts of energy to push through. I have learned to acknowledge these emotions and set them aside. While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself. To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues. It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.  

Becki Parker

The Mental Health Effects of Having POTS and Crohn's Disease

If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK. How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind? How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake. I’m constantly on my game. I’m constantly “on.” I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it. I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done. Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee. Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day. The amount of guilt sitting on my shoulders can be suffocating. The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it. I’m angry. I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person. There’s a frustration with my own body. Why can’t you get it together? Why can’t you stop attacking yourself? When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration. Why can’t I just deal with one thing? A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses. It is infuriating, as it hits you from all sides. *** Once I dig past the anger, I find the real problem: fear. We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again. I’m afraid of the hopelessness that finds me when I think about all of this. I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom. I’m 25 years old. Will it still be like this when I’m 40? Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this. These fears nag at me every day. They sit in the shadows, waiting to attack. When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger. These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in. It takes superhuman amounts of energy to push through. I have learned to acknowledge these emotions and set them aside. While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself. To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues. It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.  

Becki Parker

The Mental Health Effects of Having POTS and Crohn's Disease

If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK. How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind? How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake. I’m constantly on my game. I’m constantly “on.” I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it. I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done. Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee. Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day. The amount of guilt sitting on my shoulders can be suffocating. The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it. I’m angry. I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person. There’s a frustration with my own body. Why can’t you get it together? Why can’t you stop attacking yourself? When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration. Why can’t I just deal with one thing? A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses. It is infuriating, as it hits you from all sides. *** Once I dig past the anger, I find the real problem: fear. We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again. I’m afraid of the hopelessness that finds me when I think about all of this. I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom. I’m 25 years old. Will it still be like this when I’m 40? Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this. These fears nag at me every day. They sit in the shadows, waiting to attack. When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger. These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in. It takes superhuman amounts of energy to push through. I have learned to acknowledge these emotions and set them aside. While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself. To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues. It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.  

Kenzie L
Kenzie L @kenzie-l
contributor

'Friends' TV Show GIFs About Life With Chronic Illness

I used to be quite the runner. Three miles one day, six miles the next. Even after diagnosis, running helped me clear my mind and maintain a strong body. Then I came off of my biologic due to infection(s). After doing so, I adjusted to new life as a college student, underwent hip/ankle surgery, and entered the recovery period. Between schoolwork, nannying, and maintaining a social life… running got put on the back burner. That being said, I had big plans for the summer regarding running. I mean huge. Without schoolwork to worry about and my best friends scattered all across the country, I wanted to start training for the half marathon I’ve always wanted to run. I wanted to feel good in my skin again. Then the summer actually arrived. It was filled with mysterious new symptoms and unrelenting pain. In other words… not running. Sigh. I did start Methotrexate injections and am looking forward to seeing how/if they help me! The injection itself did not burn whatsoever which was pleasantly surprising! Following that injection, my rheumatologist’s PA decided to go ahead and give me cortisone injections in both shoulders. I was stiff and sore for most of the weekend but things are feeling pretty good now… again, pleasantly surprising! Anyway, while I may not be in any place to get my running goals underway and accomplished, I can certainly do other things… like walk on the treadmill in my room and binge-watch “Friends.” Not all is lost! Today, in honor of nearly wrapping up the 10th and final season (thanks, Netflix), I present to you “11 Times Friends Nailed What It’s Like to Live With Chronic Illness.” 1. When someone asks how you’re doing and you don’t have time/it’s not the place to go into actual detail… via GIPHY 2. When someone says (for the 6 billionth time) “Get well soon!” or asks, “So, when are you going to be… erm… like… better?” via GIPHY 3. When brain fog messes with your memory and you realize you’ve forgotten to do something (it’s usually of great importance)… via GIPHY 4. When you go in for a routine check up and walk out with a new diagnosis… via GIPHY 5. When you finally give into those prednisone cravings… via GIPHY 6. How prednisone makes you feel after giving into said cravings… #wired via GIPHY 7. When you first wake up and think it’s going to be a good day, but the second your feet hit the floor your body says otherwise… via GIPHY 8. When you’re trying to function normally in society but it’s not working because not. enough. spoons… via GIPHY 9. When you accidentally spend more spoons than you had in the first place and your body begins reacting adversely… via GIPHY 10. When the Methotrexate, Enbrel, Humira, Orencia, etc. hangover gives you the ability to fall asleep absolutely anywhere the day following… via GIPHY 11. How you feel after a high pain day + full day of work, school, etc. surrounded by people who don’t “get it…” via GIPHY Because otherwise… via GIPHY Maybe all we need to navigate this chronic life is a good sense of humor and “Friends” (the show and real ones, of course)! Or maybe that’s the pain meds talking… either way, I hope this post brings a smile to your face and reminds you that someone gets it! This blog was originally published on Life According to Kenz.

Becki Parker

The Mental Health Effects of Having POTS and Crohn's Disease

If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK. How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind? How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake. I’m constantly on my game. I’m constantly “on.” I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it. I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done. Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee. Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day. The amount of guilt sitting on my shoulders can be suffocating. The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it. I’m angry. I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person. There’s a frustration with my own body. Why can’t you get it together? Why can’t you stop attacking yourself? When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration. Why can’t I just deal with one thing? A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses. It is infuriating, as it hits you from all sides. *** Once I dig past the anger, I find the real problem: fear. We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again. I’m afraid of the hopelessness that finds me when I think about all of this. I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom. I’m 25 years old. Will it still be like this when I’m 40? Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this. These fears nag at me every day. They sit in the shadows, waiting to attack. When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger. These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in. It takes superhuman amounts of energy to push through. I have learned to acknowledge these emotions and set them aside. While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself. To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues. It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.  

Becki Parker

The Ways Crohn's Disease Will Not Affect My Life

In the three years since my diagnosis, Crohn’s disease has taken many things. My new life has been a constant game of tug of war: with every tug toward illness and despair, I dig in my heels and begin the fight for health and positivity. While I’ve gained so much ground, earning uncompromising strength, compassion and knowledge of the human body, I have lost a few things. My pace has slowed and my priorities have adjusted without my consent. I have mourned the old me who was full of fire. Crohn’s has stolen my energy. It has mangled my blonde locks like a 3-year-old with scissors. It has taken my friendships and altered them, requiring more maturity and understanding. Some relationships, unfortunately, did not make it. It has taken my time, frittering it away in waiting rooms, exam rooms and hospital beds. It has condemned many of my favorite foods; vegetables, apples and granola are all distant memories. The monster has even ransacked my colon! Crohn’s disease has taken many things, but there is so much more it will never touch. Crohn’s disease cannot dilute my creativity. The wonders I can create are my own sentimental reminders that though my hands may shake, they still craft beautiful gifts. Crohn’s disease cannot steal my endearment toward children and their hearts. Nor will it make my heart guarded against starting my own family. Crohn’s disease cannot steal away my self-esteem. I am helpful, caring, sarcastic, intelligent, funny, bull-headed and sincere. My winsome soul shines through dark circles, stretch marks and scars. Crohn’s disease cannot rob me of my love for ’90s music and bad dance moves. You can bet your bottom dollar, whether flaring or in perfect health, you’ll find me doing the cabbage patch to my *NSYNC playlist! Crohn’s disease cannot snatch my love for animals. I will always bring home the stray and love him. And let’s be honest, nothing’s better than puppy cuddles on a bad gut day. Crohn’s disease will not trap me in a world of negativity and fear. I will use my experiences to elicit hope, strength, love and acceptance. I will support my fellow patients and encourage them to continue to follow their dreams. I will strive for the best in life. I will enjoy the little moments and laugh in the face of anxiety. My life will continue to be filled with joy and delight. I will be proud of every milestone I reach, no matter how long it may take me. I will celebrate every victory over this autoimmune disease. I have and will always have a tenacity to reach my goals and overcome any obstacle. I have Crohn’s; it does not have me.

Becki Parker

Coping With Scars From Crohn's Disease

Your body is a temple. It is yours to adorn, worship and protect. And lately, my temple feels like a rundown shanty. During my journey, I’ve racked up my share of scars, poke marks, bruises, iron stains, stretch marks, moon faces, and bald spots. I’ve dropped pounds like bad boyfriends and regained them faster than I can blink. My body has had a traumatic five years with no end in sight. Crohn’s disease has been a nasty case of termites that my temple just can’t shake. It’s demolished the drywall and ruined the plumbing, no pun intended. With each ding, my team of doctors and I team up to do our own styles of repair and renovation. Each “renovation” has almost always been met with a new problem. I finally have that hourglass figure, and Crohn’s gives me a permanent ileostomy bag with a swollen right side. I receive a compliment on my porcelain skin, and my iron infusion infiltrates and leaves a nasty stain forever inked on my forearm. My surgeon completes my colectomy with tiny lacroscopic sites, and the pain medication makes me so violently ill, I tear my sites and end up with big, red scars. For years, my body has been under siege by the fiery tyrant known as a faulty immune system. My life has been out of my control and at the mercy of whatever treatment we’re hoping will work. Tests and medications, while temporary, can sometimes add to the list of scars that I love to make up crazy stories for. There are days nurses can place an IV within seconds without leaving a mark, but more often than not, I can guarantee I’ll be poked and bruised handfuls of times before they wheel in the ultrasound machine. This has been especially true the past few weeks. My arm has been a lovely shade of bluish purple, courtesy of far too many blown IVs or rolling veins. And thanks to that faulty immune system and slow healing process, they’ve hung around for quite some time. On top of my battered arm, mystery bruises have taken up residence all over my legs. I look like I’ve survived a few rounds against Randy Couture! These uncontrollable scars remind me that my vanity is alive and kicking. I take the extra effort to do my hair and hide my dark circles, even if it means I’ll need to push back the outing and take a nap. I berate each selfie before ultimately deleting it and trying a new pose, angle, or giving up altogether. I do my own version of Jazzercise in the dressing room to make sure the potential outfit covers my bag. Looking “normal” is a painstaking process that requires much more thought than usual. It takes a lot of camouflage to mask the reminders of my battles. Now, please, don’t get me wrong. I am proud that each scar shows my will to survive and fight for a better life. But I don’t always want them to be on display for the world. Some days there a reminder that what is supposed to help me heal can take its own toll on my body. There will always be scars and physical signs of my “invisible illness” that I can’t avoid. There will always be storm damage or plumbing problems or missing shingles in my temple. But I am a pretty great architect. I can’t avoid the damage to my sacred home, but I can always adorn it to not only show the best me, but incorporate the cracks and dings into my style. When I was a kid, I was a pretty big tomboy. I knew nothing about hair and makeup and fashion. But with determination and good ol’ Pinterest, I’m learning quite a lot! With the need to hide bald spots, I’ve become pretty great at styling my own hair. It’s even made me realize that hair is just hair, it’ll grow back, so take a chance! Chop it all off, dye it purple, try out a perm. While my closet may be full of revolving sizes, I’ve developed my own perfect mixture of comfort and country chic. My jeans may be stretchy, but they allow me to get through the day without my ever-bloating belly causing me hassles. After I had my colon removed, I had a purple one (the punctuation mark) tattooed on my wrist. It was my way of reminding myself of how strong I could be and that Crohn’s can’t take anything away from me without my consent. It’s a great conversation starter! I’ve always been embarrassed my these little scars I’ve developed on my nose. After much thought, many discussions, and backing out a few times, my temple is now the proud owner of a new door knocker: a pretty little nose ring. I can’t erase the damage, but I can accept it by making it my kind of beautiful. I can’t avoid the scars that are going to happen to me, but I can learn to love them in my own way. If that way means tattoos, piercings or Prince purple hair, so be it. This is my home for the next 60 or so years, and I deserve to do whatever I need to love it.