This is an old article about the journey Chanel White has walked..... WOW! If only I had the courage as she does. I have scleroderma with all its little nasty vipers nipping at me, too.
She explains our autoimmune illness here https://thetubefedwife.blogspot.com/p/what-is.html
You can visit her, get updates and such at https://thetubefedwife.blogspot.com/
Meet the 23-Year-Old Whose Body Is Turning into Stone
Amy RushlowSenior Editor
https://www.yahoo.com/health/meet-the-23-year-old-whose-body-is-turning-into-124001293202.html
Chanel White, age 23, is living with a rare chronic disease that slowly hardens her skin and organs. (Photo courtesy Chanel White)
I was diagnosed with systemic scleroderma right after I turned 20, just a couple weeks after my honeymoon, in October 2011.
I had never heard of scleroderma before the doctor told me I had it. Scleroderma is an autoimmune disease where the body produces too much collagen. It’s as if someone is pumping concrete into your body.
In systemic scleroderma, the collagen not only builds up in your skin and your vascular system but also your connective tissue, the framework of the human body. If you didn’t have connective tissue, you would be like Gumby and you’d just fall apart. If you have too much, like me, you basically turn into a living statue.
The disease is rare — fewer than 500,000 Americans have it — and there is no cure. You could live for five months or you could live for 20 years. But based on how fast I started showing symptoms when I was diagnosed, I was told 10 years would be fortunate. That was three years ago.
At that time, I’ve realized that something so extremely broken can still be so beautiful. I’ve learned that there is joy in letting go of what you can’t change, in letting go of what you believe your life was intended to be, and instead of accepting and celebrating and revering all that it gives. I can’t do anymore that my body will let me do and I have to accept that. Once you do that, you can find the beauty in a body vandalized like this.
A Day in My Life
In the media, you see stories of people who are doing all of these amazing things when they are sick, and honestly, for me and many others, it’s not that way. There are a lot of naps, a lot of doctor’s appointments, a lot of medication taking, a lot of being too sick to do anything. I think people aren’t as interested in that; it’s boring, but it’s the reality. Illness is not a glamorous existence, and it’s important for people to know that.
When I get up in the morning, there’s just a lot of pain. There’s always a fresh wave of pain when I wake up. It’s just a realization that, yep, this is your body, this is what you’re living.
My day starts with a handful of pills, a bunch of liquid supplementation, and getting my tube feed started. I take 28 different medications a day, each multiple times a day. I am overproducing collagen in my digestive tract, and so essentially my esophagus, my stomach, and my bowels are stone. I can’t swallow food, and my stomach doesn’t empty. It’s like trying to drop nutrients into a rock. Everything is paralyzed.
I’m hooked up to tube feeds for 14 to 15 hours a day. The nutrition runs through a pump into a port in my abdomen. My stomach can’t handle too much at once, so it has to go into my stomach very, very slowly — about two ounces every hour.
Typically, I have anywhere from one to three medical appointments a day. I have a port in my chest for chemotherapy infusions. I have iron infusions every five days. I can have up to 20 appointments a month. It’s overwhelming. There’s not a lot of time to yourself when you’re sick.
Life isn’t very glamorous. There’s a lot of Netflix watching and napping and puking and feeling horrible. There are also lots of talking to friends on Facebook and blogging when I feel well enough. I live in pajamas. I probably own more pajamas than I do clothes.
On social media, I will post pictures of me smiling and wearing makeup when I do get out of the house. I don’t want people to misinterpret the illness. But I also want to capture the moments where I’m enjoying myself because they won’t happen often. I think it’s important to show that you can still enjoy life in a broken body, but it’s also important to have people understand that this one picture of me smiling is not me, it’s the face that I put on. Those are the rare occasions that I try to enjoy when I get them.
A Sudden, Shocking Diagnosis
I started having symptoms just before I was diagnosed. It was almost one of those overnight things where you look down and just stare, wondering “what is happening to my body?”
My hands would turn this horrible shade of violet purple, and they would go completely numb. I never thought much of it; I just thought my hands were cold. But I wasn’t cold — this was happening in a 70-degree room. After a few weeks of that, I started losing hair, I was tired all the time, and the tips of my fingers were starting to look kind of weird.
One day, I looked down and I thought I had burnt my finger cooking. It looked like I had just sat my finger on a hot grill. It was black and scabby, and horrendously painful. Every time I touched it was excruciating. It didn’t go away and wasn’t getting better, so I finally went to a doctor.
He took one look at me and told me, “You have scleroderma.”
Typically, a scleroderma diagnosis takes years. Many people are misdiagnosed with lupus or other autoimmune diseases. I walked in and literally didn’t even have a chance to say hello before the doctor was like, “You have this horrible disease.” I didn’t know what to do. He gave me pamphlets to read, tons of medication to pick up from the pharmacy, and a new way of life to start. I started chemotherapy pills and immune suppressants right away. Immediately after that appointment, it was a drastic life change.
My fingers are tight and swollen; I can’t straighten them. They get these sores — that word really doesn’t do them justice — they’re ulcerations, dead skin, and tissue. It’s because concrete is not only harming my skin, but it’s also crushing my vascular system.
A lot of people when I first received the diagnosis thought it only affected my hands. They’d ask, “How are your hands doing?” And I kept trying to explain to them, “Yes, you can see that my hands are purple, you can see they have sores on them, but that’s also happening to my organs.”
Becoming My Own Casket
Since my diagnosis, it has been a snowball of one problem after another. In December 2014, I was walking up the stairs to the mall and collapsed. I was wheeled out and rushed to the emergency room. My body had just stopped. I couldn’t walk, I couldn’t lift my head — I was lying in a hospital bed with a machine breathing for me. I was basically awake for a month but couldn’t do anything on my own.
I don’t have much of an immune system, so I get sick very easily. I ended up with meningitis, C. diff (Clostridium difficile, a bacterial infection), and spinal fluid in my brain. It was to the point where they basically told my family, “Say your goodbyes.”
I recovered, obviously, and went to rehabilitation. I learned how to walk again with all of these people who just had their hips redone.
In the past year, the disease has started attacking my respiratory muscles. My diaphragm functions at about 18 percent, so breathing has become a difficulty. I carry around oxygen because if I talk for a long period of time, or walk for too long, I don’t have the capacity to get my diaphragm moving and expand my lungs. This disease truly damages every inch of you.
Strong Support
I’m grateful that my entire family lives nearby. My number one supporter is my husband of four years.
We were high school sweethearts. I was a competitive gymnast and had the scholarship to be a vocal performance major. We were going to go to college together. We had goals. Then things changed, and he has been so adaptive and so supportive. Every hospital stay, he slept in that uncomfortable chair. I’m in a hospital sometimes for thirty days.
Chanel White with her husband, Noel White, who she calls her number one supporter. (Photo: Chelsey Shaw Photography)
I absolutely would not be able to face this battle without him. I’m not going to lie and say I don’t have breakdowns and I don’t get upset that I’m dying at the age of 23. There are times when I can’t be strong; it’s just not in my power at that moment. He is able to look at me and just say, “It’s okay.” Not that it’s going to be okay because we both know that it’s not going to be okay. But it is okay where we are at. We are together and he’s going to be there.
Learning to Let Go
This illness has opened my eyes to the world. Before I became ill, I really didn’t have that perspective that life can be over in an instant. I never really had any major tragedies growing up. I never saw a lot of deaths. I never saw a lot of illnesses. And now I’m thrust into this world where there are constant death and constant illness. I’ve watched friends die. I’ve watched just people go through suffering that no human should ever have to endure. I realize now that life is such a fragile thing and it can shatter in an instant. Once it does, you won’t be able to put it back together — you just have to move on as a changed person.
I feel that I am a completely different individual since I became sick like it opened this part of me that I just didn’t know really existed. I’m stronger, more resilient. I understand that I need to stop and take time to do the clichés, like smell the flowers, take the longer journey and just enjoy the little things. Small victories are important. I am happy if I can have a bed. I am happy if I make it to the couch. I am happy if I am able to drink a small amount of Gatorade and not throw up.
People might say that I learned not to take things for granted, but it’s not like that. I don’t think people are taking things for granted if they don’t understand. I don’t think someone is a bad person for eating a cheeseburger and not enjoying it. When you’re sick, it’s a different way of life. You learn to accept it. You learn that, wow, being able to eat a cheeseburger is really great.
It’s not about whether you take things for granted or not. It’s about understanding and accepting the life that you have. And making it the best you can. And celebrating what it is.
Chanel White blogs at thetubefedwife.blogspot.com.
I’m 17, going into my senior year of high school and I have mitochondrial disease. I am dependent upon feeding tubes, IV nutrition and countless medications to keep my body working every day. I need plenty of help just to get through the day, and it’s definitely not easy at all! Thankfully, I have a wonderful support system. Despite all of this, I try and live past my illness every day and continue to try and do the things I love even though my disease has taken a lot away from me. Here are the things I’d like you to understand about living with a chronic illness.
1. People always say, “You are too young to be in that much pain.” Chronic illnesses don’t discriminate. It doesn’t matter what your age, race or gender is. It doesn’t matter where you live. All children, adolescents, young adults, adults and the elderly are at risk of developing and managing a chronic illness.
2. “But you look perfectly fine.” That’s the problem, we aren’t “just fine.” Our disease is invisible to the naked eye, but if you turned our bodies inside out, you’d see the real damage our disease has caused us. The reason people with chronic illnesses look fine is that their illnesses can be invisible, so that’s why they’re also known as invisible illnesses.
3. We don’t cancel plans on purpose or because we don’t want to hang out with you. Trust me! We would do anything to be normal and just hang out with friends, but sometimes we are too sick to even get out of bed. Please understand we don’t mean to cancel at the last minute, but this disease affects us daily and how we feel changes daily. One day we’re able to go out to a movie with friends and then the next we’re lying in a hospital bed.
4. Lying in bed all day is not a luxury. Netflix and the Internet can only entertain you so much. After a few hours, you start to get bored and want to experience a typical life. One other thing: Don’t wish you were us and say you want to live like we do because it’s definitely not glamorous. Many of us would much rather be working or hanging out with friends.
5. “It’s all in your head.” This is a common saying a lot of people with chronic illnesses have heard. It’s not psychological. It’s real and causes very severe physical effects on the body.
6. Don’t pity us. We can do almost everything you can do. We just have some extra challenges in the way. It may take some extra time, but we’ll get there eventually. Try not to focus on the “I can’t” and look at what an amazing person we really are. We get enough pity from random strangers, so we don’t need it from friends and family.
7. If you don’t know about our disease, just ask. We’ll be more than happy to explain it to you so you can understand more about our condition. Information found online may not be entirely accurate or related to the specific diagnosis we have. Never assume that you know it all when more than likely you don’t. So please don’t come up to us saying you’ve found our miracle cure because more than likely you haven’t.
8. Most importantly, we’re not lazy. People with chronic illness might also deal with chronic fatigue, and that just wears us out. Imagine if you were fighting a battle against your own body. Your body has to do both parts of the fighting here! Can you imagine how much energy that takes? We try to keep caught up with work and school and not stay in bed and sleep all the time, but it does get hard.
9. “If only you would exercise more.” I’ve heard this one too many times before. Your physical strength does play a role in chronic illnesses, but, trust me, we try to keep pushing through and do as much as we can. However, our disease can limit the amount of energy and strength we have so this makes exercising difficult. There are some chronic illnesses which require the patient to not exercise at all. The patient’s physician will be able to tell whether exercise would be beneficial.
10. “If only you were more positive, then you would feel better.” People with chronic illnesses are some of the bravest and happiest people I’ve ever met. They love life for what it is because they all know life is short and you don’t get an extra chance. It’s hard to be positive every day when nothing ever seems to be going right and you’re in so much pain. Everyone is entitled to feel negative every once in a while.
When living with a serious illness, you become accustomed to hearing phrases from the uninformed bystander — or even your own family. While these phrases may come with good intent, many are actually quite distasteful for the circumstances we’re facing. Phrases like “Everything will be OK,” “I know what you’re going through,” and “God only gives us what we can handle,” can be somewhat offensive or even demean what we’re facing. Here’s a compilation of appropriate affirmations someone facing a serious illness would rather hear you say.
1. “I Googled your illness.”
A frequent issue we run into is the lack of understanding surrounding our diseases, even by close family and friends. But simply stating you took the time to research an ailment confirms you truly care about your loved one’s condition. Taking this small glimpse into the symptoms they may be experiencing will help you understand what they endure daily. This easy task will also reveal a person’s likely prognosis, which in turn will help the bystander rule out inappropriate remarks such as, “Get well soon” if, in fact, the patient will not.
2. “I have no idea what you are going through.”
It’s human nature to attempt to relate to those around you; however, when someone is experiencing a trauma you’ve never encountered, expressing, “I know what you’re going through” is not appropriate. The reality is, you have no idea what it is like to slowly watch your body deteriorate unless you’re personally experiencing it. A person with a serious illness often faces unimaginable pain and mental turmoil as a consequence of his or her disease — this is not something you can understand because you’ve experienced, say, the stomach flu.
3. “Sometimes it does feel like God gives us more than we can handle.”
The truth is, whether you’re religious or not, expressing to someone that their situation will never be more than they can handle is distressing. Illness seizes your life and changes everything you knew about yourself. On a daily basis, it can feel as though the world is collapsing around you; it most certainly feels at times like it’s more than we can handle. While it’s a nice sentiment to point out that we’re tenacious individuals who can handle what life throws at us, it’s more comforting to us when you acknowledge the times we feel overwhelmed and lost.
4. “I approve of whatever treatment option you choose for yourself.”
Illness is tough enough without input on how we choose to handle them. While many individuals mean well with their herbal remedies, supplements or special diet plans, we must decide for ourselves how to handle our situations. If we decide to use Western medicine to treat our illness, please respect that choice and recognize that we know our bodies best. Attempting to persuade us that we’ve made a misinformed choice or taken the easy way out doesn’t generate a positive feeling for us. Remember to consider that our illnesses are complex, and while a diet may have worked for your issues, it may not help ours.
5. “I know you look good, but I accept that you’re feeling beyond what I can see.”
The most common phrase I receive is, “But you look so good!” But many of us face what is known as “invisible illnesses.” This means that while we may look healthy on the outside, our bodies are raging war just beneath the surface. Acknowledging that we look good seems like a positive affirmation, but it can also belittle what we’re facing, especially when “You must be feeling better” follows. The disease is like an iceberg; you can truly only see the tip. What’s below the surface is extraordinarily large. Please recognize that while we look like healthy individuals, there may be much hardship beyond what you observe.
6. “I recognize that everything might not turn out OK.”
There’s a significant difference between being pessimistic and accepting the reality of one’s situation. All of us living with an illness have had to accept our prognosis. For me, living in a sugarcoated bliss doesn’t benefit me in the long run. This attitude doesn’t mean we’re pessimistic. It means we’re realistically facing our trials. When someone in our life is unrealistically positive, speaking of cures to disease which has none, it can feel quite degrading. In a way, this frame of mind expresses that our trial is not as serious as we believed, that we’re making up the severity of our situation. Many diseases do lead to death, and while conveying to someone, “Everything will be OK” is a lovely thought, truth is, it might not turn out that way. Please remind yourself to accept the reality of someone’s illness. This affirmation will not only assist that person’s confidence but will also create a more comforting environment of acceptance for the bystanders if things do take a turn for the worst.
Why People With Invisible Illnesses Don’t Like Hearing That We Look Good
It’s not a secret that people with chronic and invisible illnesses get tired of hearing they look good. You might think this irritation is irrational and that’s OK because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?
Do you know what we do when people tell us we look good? Most of the time we force a smile, say thank you and then go have a conversation with a fellow “spoonie” about how annoyed we actually were.
“You look good,” “You don’t look sick” and various other forms of that sentiment are on every “Things Not to Say to Someone With a Chronic Illness” list. So it’s not a secret that we don’t like to hear it.
The secret is why.
The simple answer is that just because we look good doesn’t mean we feel good.
But it’s more than that. When we feel awful and someone tells us we look good, it makes us feel like our struggle is being minimized. It’s not that we’re mad people think we look good — it’s that we’re worried people won’t understand we’re still sick. If someone thinks we look good, we might assume they think we feel good too. So we feel invalidated.
We have a love-hate relationship with the fact that our illnesses are invisible. It’s nice to be able to blend in, and it’s nice to be able to be selective about who we share it with, but sometimes it makes it harder to accept things are different. When we look in the mirror, we often see the same person we’ve always been. We see these bodies that used to dance, run, work, sing, cook, whatever, and then it’s a letdown when we remember we can’t do all those things anymore. We feel disappointed.
Sometimes, our bodies don’t even do the everyday things they’re supposed to do. Digesting? My body doesn’t really do that. Standing up? Yeah, not a fan of that either. It seems like our bodies are always letting us down. We feel betrayed.
All around us we see people doing these everyday things without thinking twice while we’re just struggling to stay on our feet (figuratively, yes, but often literally too!). Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless other people are touched by illness, they can’t fully understand that while we look fine on the outside, on the inside we may be falling apart at the seams. We feel isolated.
It’s also hard for other people to comprehend our limitations. Even if they do comprehend them, not being able to see those limitations makes it easy for other people to forget they exist. We often have to provide multiple explanations or reminders, and then we worry about being a downer and holding other people back. We feel guilty.
Sometimes looking good or healthy can even be an obstacle to getting proper treatment. Most of us have worried at one point or another that we don’t look sick enough to be taken seriously. We feel defensive. All of us have had doctors question our symptoms based on our appearance and tell us our problems are all in our heads. All of us have been treated as hypochondriacs, and after going weeks, months or even years without answers, we start to wonder ourselves if we’re just going crazy. We feel doubtful.
Here’s one of the biggest things we don’t talk about: We feel insecure.
When we become sick, our body is no longer entirely our own. For one, we have a lot of doctors wanting to know about a lot of things that we’re not always comfortable talking about. Two, we lose a lot of control over how we look. We maybe feel like we’re too skinny because we haven’t been able to eat lately. Or we’re unhappy with how much weight we’ve gained since starting a new medication. We don’t like how puffy our face is due to fluid retention. We’re frustrated by the acne that’s showed up because our hormones are out of balance. We’re exacerbated by the dark circles under our eyes that won’t go away no matter how much we seem to sleep. We’re acutely aware of all the ways our illnesses and treatments have altered our appearance, so when someone tells us we look good, we think about all the ways in which we don’t. It’s hard to feel comfortable in our own skin when it doesn’t feel like our own skin. We feel self-conscious.
We know when you tell us we look good it’s because you’re trying to be supportive or you don’t know what to say but you want to be encouraging, or maybe you really do think we look good and you want to make us feel good about ourselves. We know it seems silly for us to despise a compliment so much.
But it’s more than just irrational irritation. Invalidation, disappointment, betrayal, isolation, guilt, defensiveness, doubt and insecurity. All of that is tied up in looking good.
So thank you for trying to be supportive and encouraging, but we don’t want to hear that we look good.
We want to hear that we look bad.
No, I’m totally kidding! Let’s just leave our looks of it altogether.
