The Unchargeables is an online chronic illness support group. Our goal is to reach every single chronic illness warrior in the world and let them know that they are not alone. We call ourselves Chargies, welcome to the community.
Two days before Christmas my great-grandma passed away, and I needed something to help me cope with her passing so I decided to go on Netflix and search through the newly added movies. And there it was, a 1991 movie, My Girl which follows the story of 11 -year -old tomboy named Vada Sultness who lives with her father who is a funeral director and her grandma who has Alzheimer’s disease in the summer of 1972 in Madison Pennsylvania. Vada is also the outcast of her group of classmates and it didn’t help that her best friend was Thomas J.Sennett is a boy.
From the second I saw Vada pop up on my screen ridding her bike with Thomas, and getting into trouble while trying to find this to occupy their minds for a long summer I had fallen in love with My Girl. I couldn’t take my eyes off the screen as Thomas and Vada do many things together like go to the lake and going to the ice cream shop to share an ice cream.
It’s OK to Cry!
Although Vada seems to be having the summer of her life, she is struggling with the death of her mother, who died before she was born and asks her friends and family a ton of questions about her mother. Throughout My Girl, you see Vada and Thomas friendship blossom into a typical pre-teen romance. Thomas and Vada become inseparable but unfortunately, Thomas passed away after having a severe reaction to a bee sting while walking into the woods alone. Doctors couldn’t save him from his death, but while watching My Girl, I learned it’s okay to cry and grieve for as long as I need to.
When it comes to grief there is no time period on when we can stop grieving and stop missing your loved ones and the memories you shared with your loved one that is no longer with you.
But My Girl also teaches you although your loved one isn’t physically with you on earth anymore they are with you. They’re always with you in the memories you have with your loved one, therefore they’re never gone. As long as you carry on the lessons that you were taught by that loved one, their memory will never fade away.
It’s OK to Put Yourself First
I learned from watching My Girl that it’s okay to take breaks and cry and then come back to everyday life when grieving. Your self-care and mindset come first before anything else, and you should take care of your self when grieving before doing the task you would normally do.
Your health is important while you’re grieving, and you shouldn’t put others before you when grieving, because you have to make sure that your mental state is okay before worrying about anything else. Watching My Girl taught me it’s okay to show emotion and not to be afraid to cry if you need to as well.
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
A sitting disability occurs when someone finds it difficult to sit or is unable to sit entirely. This is usually due to experiencing pain. You don’t have to have any other chronic issues or disabilities to experience a sitting disability, however, many people can experience both chronic illness and sitting disabilities simultaneously. The term ‘sitting disability’ is unfortunately not well known or recognized. I myself didn’t know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it’s easily overlooked by people who don’t experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back.
I do not consider my sitting disability to be on the severe end of the scale by any means, yet it impacts every second of my life. Whether I’m sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.
Mobility Issues Are Not Cancelled Out By Sitting Disabilities
Things become even more complicated when you have a sitting disability as well as issues standing and walking. It can be difficult having to explain to people why you have difficulty both sitting and standing for long periods of time, and how one isn’t the solution to the other. For example, I was discussing future career options with someone I knew. They knew I had mobility issues, so they suggested I become a truck driver. They said this was the solution to my problems because I would be sitting for hours on end and wouldn’t have to get up and move around often. As I explained that I couldn’t sit for long periods of time either, this person became more and more perplexed. Likewise, a job where I’m walking around a lot and barely sit wouldn’t work for me either. I’d have to find a way to balance the two and minimize my pain levels as much as possible.
Experiencing a Sitting Disability Throughout Childhood
When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn’t take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers. Even once I entered high school and no longer had to worry about sitting on the floor as often, students who attended the same primary school as me would point at me and say things like “that’s the girl who sat on a cushion” with a malicious undertone.
Road trips were also (and still are) very difficult for me. Along with family holidays, there were also school trips and sports camps. While my family quickly learned how to make road trips easier for me (and therefore the family as a whole) by doing things such as taking breaks more often and letting me have the seat with the most room, school, and sports trips were a lot less flexible since there were other kids and adults to worry about. For these situations, I made sure to have a pillow/cushion on me for lower back support and my pain meds in an accessible place.
Public Transport
For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible.
I travel two and a half hours each direction by public transport to attend university across the city. As you can imagine this is not ideal for someone with a sitting disability. In order to get through the trips with as little pain as possible, I try to sit on the right side of the bus or train so I can lean against the wall for support. Then if the seat next to me is free I tuck my right foot up under my left thigh on the seat, which can take up a bit of the seat next to me. This is the position that causes me the least amount of pain. I try to be as mindful of the people around me as possible, so if the train or bus is full I’ll sit normally, despite the near agony it causes me. Despite the fact that I need to sit in this position in order to be able to get through the day, I often receive dirty looks, and sometimes the train managers will tell me to get my foot down. Whenever this occurs, I comply with the train manager because it seems like that will take less effort than trying to explain my situation to them. However, whenever I do sit in a “normal” position for any length of time, I end up in a lot of pain and become shaky and tired. It doesn’t go away once I stand up, either. So, I can end up feeling like that for the rest of the day.
I’ve found the only time I haven’t received any ridicule for sitting with a leg on the seat is when I had an ankle injury and had a moon boot on. The moon boot acted as a visible symbol that I was having trouble sitting in a specific position, whereas without it people assume there is no issue, which couldn’t be further from the truth.
At University
After traveling for two and a half hours, 90% of which is spent sitting, my back is often already stiff, sensitive, sore, or all three. Sitting in classes that are over an hour can be very difficult, especially if the chair is uncomfortable and has limited lower back support. This can also be an issue during exams. However, I’m very lucky to have the support of my university’s Disability Services, who do their best to provide me with supportive chairs in lectures and exams. These supportive chairs allow me to sit longer with less pain, however, do not take away the pain and exhaustion completely.
One of my favorite spaces at university is a room in the library which has bean bags. If I arrive at university early or am waiting between lectures, I enjoy sitting on bean bags because I can just sprawl there without having to support myself, which keeps the pain and exhaustion at bay.
Dealing with a sitting disability on its own is hard enough, however, it can become even more difficult when you have to deal with chronic illness on top of it. Sitting disabilities can make everyday activities become difficult and can make tasks that are supposed to be simple to become extremely tedious. While disability activism has and is making great strides in our society, there isn’t much awareness surrounding sitting disabilities, though I’m sure many people experience it in one form or another.
I’ve read a lot of horror stories about the way people with sitting disabilities have been treated in public and it hurts my heart. I’m lucky enough to not have experienced anything serious. Yet, I hope the spreading of awareness around sitting disabilities will prevent such conflicts happening in the future.
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Pancreatic cancer is one of the fastest growing cancers in North America. According to the American Cancer Society, around 3 percent of all cancers in the United States are pancreatic cancers. In 2018, they expected around 55,440 people to receive a diagnosis of pancreatic cancer.
Fast Friends
Nobody thinks about Pancreatic Cancer when they meet someone new. The memory of the first time we met Sweet Lou is as clear as yesterday. There was no way to know then that he would be taken away so quickly. Like so many things in life what seemed like a negative situation turned into something positive. We met some of the best humans we have ever known when a landlord defrauded us. Lou was one of those people.
Determined this landlord situation was certainly a sign that the recent relocation to Colorado was doomed from the beginning caused much tension in my marriage. Desperation set in to move back to Georgia where the support of parents and siblings would be certain. Plus I was surprised my husband decided to share this personal information with people we had just met – that caught me off guard. But, when I stared into the friendly faces of our new neighbors that night I told the truth. Raising kids is hard without family around. Sweet Lou said, “We’ll be your family.”
As you may have guessed this story does not have an entirely happy ending. As I write this now Lou has been gone almost a year.
The Job of the Pancreas
Photo Credit : My Fit Station
The pancreas is a spongy, elongated pear-shaped gland organ. It is located in the abdomen and helps your body digest food and regulate insulin. The pancreas excretes digestive fluids into the intestines and works with the liver and gall bladder to help break down foods. The most important function is to regulate the insulin in your body. “Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys (Columbia University, 2019). Most people probably do not think much about the pancreas unless they are a fan of Patrick Swayze or Alex Trebek.
Pancreatic Cancer Statistics
Pancreatic Cancer is the 3rd leading cause of cancer-related deaths in the United States
More people die from Pancreatic Cancer than from Breast Cancer
The average lifetime risk of Pancreatic Cancer in the US is 1 in 64
The five-year survival rate for all forms of Pancreatic Cancer is just 7%
The one-year survival rate for all forms of Pancreatic Cancer is 20%
Death rates for all cancers have declined except for Pancreatic Cancer which has remained the same in the last decade.
Every day in the United States 155 people will be diagnosed with Pancreatic Cancer. Statistics can make it easy to forget that each one of them represents a human being: a father, mother, son, sister, husband, or friend like Sweet Lou
Behind the Pancreatic Cancer Statistics
When it comes to cancers two questions are usually on everyone’s minds. What are the risk factors? And, how do I prevent it? There are certain risk factors for Pancreatic Cancer that you cannot control. Some are a possible genetic predisposition, exposure to certain chemicals at work, age, gender, race, diabetes and chronic pancreatitis. Some factors within our control are thought to contribute to an increased risk and include obesity and tobacco use. Others such as diet, a sedentary lifestyle, infection, or coffee and alcohol consumption are not as clearly connected.
Most advocacy groups will point out that a healthy lifestyle may reduce your risk of getting certain types of cancers. This point should not be mistaken to mean that any individual is responsible for their personal cancer diagnosis. At the end of the day we are all just trying to balance our lives between what is good and what is good for us. In Lou’s case he was not at a high risk and was in generally good health.
Warning Signs
One of the most difficult aspects of Pancreatic Cancer is that there are few early warning signs. This is complicated by the rapid rate with which the cancer spreads. The symptoms are vague: pain in the abdomen or back, weight loss, jaundice, loss of appetite, nausea, changes in stool, pancreatitis or recent-onset diabetes.
Sending your husband to the doctor every time he has a stomach ache (as I have done the past year) is not very practical. Here is where it is important to know your body. Pay attention to what is normal personally. If any of the known risk factors or family history is a possibility it is better to err on the side of caution. The Mayo Clinic recommends a person “see your doctor if you experience unexplained weight loss or if you have persistent fatigue, abdominal pain, jaundice or other signs and symptoms that bother you.”
Diagnosis and Treatment
Imaging in the form of CT, MRI or PET scans are the first steps a doctor will probably take after a physical exam. There are endoscopic procedures if a biopsy or closer look is necessary. A blood test called CA-19-9 is available but is known to be fairly unreliable. Most doctors will record levels before and after treatment, none-the-less. Again, it is important to remember the success in beating Pancreatic Cancer depends in large part on early detection. So, get to the doctor if you suspect a problem.
Once Pancreatic Cancer is diagnosed the doctor will attach a stage level between I and IV to assign a seriousness of the disease. The lower the stage the better. The most effective procedure is thought to be the specialized surgery called the Whipple procedure. Other surgeries including the removal of the entire pancreas are sometimes done. Chemotherapy and radiation are other traditional methods of treating all cancers including Pancreatic Cancer. There are many clinic trials ongoing right now that have shown to increase a patient’s lifespan.
Pancreatic Cancer Palliative Care
Palliative Care is the next step. This is the stage a patient and their family reside in between ‘there is nothing more we can do’ and hospice, or end of life care. Palliative care encompasses a wide range of modalities designed to help a patient and their loved ones cope and be as comfortable as possible. They may also help a patient consider whether actively pursuing trials is a good idea. Alternative therapies like acupuncture may help with pain. Therapies like art and music help manage emotions. And, spiritual counseling can help many manage the complex emotions that accompany a terminal diagnosis.
Pancreatic Cancer Unspoken Survivors
The survivors of pancreatic cancer are most often those left behind when a loved one passes. When I reached out to Lou’s Lady here is what she offered:
“I guess I would say do your research, get second opinions or third. Utilize clinical trials as they really do prolong life. But weigh the pros and cons when it gets towards the end as sometimes keeping someone alive longer isn’t more important than spending quality time. Go on vacation or do things that are important to you and your family. See people and make memories when you can. But don’t be afraid of offending people by setting boundaries of what the patient and caregiver can manage. Enjoy the time you are given and say everything you need to say. That goes both ways. The time you are given goes by quickly.”
Pancreatic Cancer Means Saying Goodbye
For my part, I have to add that one of my greatest regrets is not getting back to Colorado in time. Our family did eventually make our way back to Georgia. Our daughter is a Chargie with POTS andlife seems complicated for us sometimes. A combination of our difficulty accepting the truth and the complications of leaving behind a chronically ill teenager for a trip out of state had us wait until it was literally too late. By the time we landed in Colorado, Lou was actively dying.
It had been suggested to us maybe we wait until the funeral. Two trips was not feasible for us. Given the chance again, I still would have chosen to try to make it in time to see him alive. Still, getting on that plane to come home without seeing him was one of the saddest days of my life. I will always regret that we never got to tell him how much his friendship meant to our family. Within a few days we got the message he was gone. Because of the amazing man he was his legacy still lives on in innumerable ways. He will always missed.
About the Author
TJ Madden has been a regular volunteer with The Unchargeables community wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday here.
If there is one love that has remained constant throughout life, then that is food. But did you know that certain foods can cause cancer? Well here’s a piece of heartbreaking news, from today onwards you need to keep tabs on what you eat and what you ditch from your daily diet. Read on to find out more about cancer-causing foods and why you should avoid them.
What is Cancer?
Cancer is a disease that is caused by the uncontrolled cellular division in the affected part of the body. Amid several factors that cause cancer, one of its leading causes is the type of food that you eat. Foods that are genetically modified, spiced or smoked or pickled, canned, processed, and subjected to chemical treatments are carcinogenic. Consumption of such cancer-causing foods can cause severe damage to health and well-being. The best alternative is to incorporate organic and fresh foods to stay healthy and prevent cancer.
Top 10 Terrible Cancer-Causing Foods that you Need to Avoid
Genetically Modified Foods
The production of genetically modified food has exponentially increased, and most of the healthiest foods in the agricultural sector like soy and corn are genetically modified.
Experts have sadly declared that most of the genetically modified foods are not adequately tested. This insufficiency in testing implies that no-one is sure about the long-term effects of the consumption of such diets on health and well-being.
Diet experts recommend the consumption of fresh, organic, and non-GMO foods to avoid cancer.
2. Microwave Popcorn
From its storage bag to its composition, microwaved popcorn is one of the most toxic foods that can cause cancer. It is one of the leading causes of lung cancer.
The kernel of microwaved popcorn is genetically modified, and it contains artificial butter and synthetic flavors that release poisonous diacetyl fumes.
3. Canned Goods
The cans which hold the food contain bisphenol-A which is a highly carcinogenic chemical. Extensive experiments reveal that the chemical composition of the boxes can genetically alter the brain cells of rats.
Preserve your health and protect your DNA against unnatural genetic mutations by eating fresh and organic vegetables and fruits instead of canned goods.
4. Grilled Red Meat
Grilled meat is perhaps the king of delicious foods, but sadly it is the king of cancer too. The process of preparation of grilled red meat releases heterocyclic aromatic amines which is a dangerous carcinogenic compound.
Grilling the red meat changes its molecular and chemical bonding structure, and the resulting structure is harmful to health.
Experts recommend the consumption of baked, broiled, steamed, and stewed red meat for the maintenance of good health and body weight.
5. Refined Sugar
Refined sugar, especially high-fructose corn syrup, is worst in the list of cancer-causing foods. Brown sugar is refined white sugar with little molasses added for color and flavor.
Foods made of refined sugar are the primary causes of insulin spikes that trigger the growth and spread of cancer.
Ditch the cancer-causing foods that contain refined white or brown sugar and switch to organic honey, maple sugar, coconut sugar, and other such natural varieties of sugar to thwart cancer and fight against its ill-effects.
6. Smoked, pickled, and salted foods
Foods that are smoked, pickled or salted almost always contain nitrate compounds that are added to enhance shelf life. The synthetic additives of the different foods accumulate in the body and wreak damage in the form of cancer.
Cooking of smoked foods leads to the conversion of nitrates into nitrites which are toxic and far more dangerous for the body than nitrates.
7. Carbonated Drinks
There have been numerous health debates that discuss the adverse effects of carbonated beverages like soda and coke. These drinks contain genetically modified high-fructose corn concentrates, artificial colors, synthetic flavors, and other chemical additives that cause cancer.
Sodas are one of the worst cancer-causing foods that are not only devoid of nutrients but are also known to deprive the body of nutrients.
Diet sodas are worse than regular drinks. They contain aspartame which is a chemical that is as toxic to health as a bottle of rat poison.
8. White Flour
White flour is refined flour which is flour that does not contain any nutritional values. The refined flour is bleached with chlorine to make it appear whiter and visually appealing.
White flour possesses a high value of the glycemic index. It makes the blood sugar level spike high without providing the body with any nutrients.
Excessive consumption of white flour can trigger insulin resistance which can lead to cancer.
9. Farmed Fish
Fish is cultivated commercially in a crowded and controlled environment to raise vast quantities of it. The commercially farmed fish go through a variety of chemical treatments like pesticides, antibiotics, and other carcinogenic substances to control and prevent parasitic, viral, and bacterial infection of the fish.
The chemical treatment of the farmed fish makes it one of the most toxic cancer-causing foods. Farmed fish are also devoid of essential nutrients and do not possess omega-3 fatty acids.
Experts recommend the consumption of wild salmon and organic fatty fish to stay healthy and prevent cancer.
10. Hydrogenated Oils
Hydrogenated oil is vegetable oil with chemicals and synthetic additives for color, flavor, scent, and appearance.
These oils possess toxic omega-6 fatty acids that can alter the cellular structure of body membranes and wreak cancerous damage.
A few tips to fight against cancer
Strictly avoid the foods that are labeled as “fat-free,” “light,” or “diet.” Such types of foods contain more chemicals than the regular variety.
Eat fresh and organic food
If fresh and organic food is not available then eat it clean frozen or raw. Avoid processed food and junk food.
Cut down on the consumption of refined sugar and grains to stay healthy.
The key to a healthy life is healthy eating. If you can adhere to a strictly balanced diet of fresh, organic, raw, and steamed or baked foods, then no disease in the world can bring down, not even cancer. So dump the cancer-causing foods and fight cancer with healthy foods, courage, and positiveness.
A little back story, I was diagnosed with 3 chronic illnesses (rheumatoid arthritis, fibromyalgia, and lupus) when I was 17 and then after a car accident, they were in back to back flares and fighting which day they would “one-up” each other.
I tried to run off my husband by scaring him away by describing in detail the “horrors” of being a caretaker to me would be. He stuck it through with me and we got married August 8, 2014. Soon after, he had asked me to talk to my doctors about the possibility of getting pregnant. After making multiple appointments and talking with every doctor and specialist, we got the green light to actually try to get pregnant.
The start of my guilt of being a parent kicked in and never left.
I struggled with accepting that I could get pregnant after being told no for so many years. I wanted to try though since my husband was so excited. On February 14, 2015, we had our first miscarriage. The start of it as a telltale sign that it was going to happen was that my lupus flared up and I just could tell something wasn’t right.
The guilt set in fast and hard that my child didn’t survive because of my body, because of my chronically ill body. I spiraled into a depression where everything made me cry. Cat crossing the street, tears, a child laughing on the tv show, tears, husband made dinner like he did every night, tears. My lupus flare ended when I had a second miscarriage on November 18, 2015; the day before my husband’s birthday and the day I was going to surprise him with the news. I didn’t want to keep trying after that since my emotions and guilt just kept getting worse.
The summer of 2016, I was looking at puppies as a prospective service dog to replace my service dog since she was getting old. I picked up the puppy in September, and a few short weeks later I found out I was pregnant again. I was so afraid to tell my husband, let alone get excited for any check up because of being afraid. Fast forward to June 20, 2017, I had our adorable daughter, I will call “R”, at 10:16 am. My husband was ecstatic and I was reserved and quiet. I struggled with holding her and bonding because I felt guilty.
I felt guilty for a lot of things
1. R survived, but my body failed me twice and I couldn’t stop thinking about the two I lost and what they would have been like.
2. I kept thinking about how R’s life will be different because I, her mom, is disabled.
3. I couldn’t stop thinking about how much of a burden it was going to be on my husband because my chronic illnesses/disabilities are unpredictable.
4. Feeling like a failure as a mom already because I cannot be a normal parent.
It took about 6 weeks after R was born before I was willing to start trying to bond with her. I had the guilt from that because I knew that the early stages of bonding were beneficial. On top of that, I was returning to work towards the last week of August.
I struggled with every milestone she made, whether it was early or not, and then questioned whether it was because I was disabled that she would develop them early. I struggled when she started playing and growing up “too fast” in my mind because I knew that my chronic illnesses were causing me to miss some of what she was learning and growing.
A happy surprise!
I got pregnant with our second daughter around R’s first birthday, this one was a surprise to us, but we knew we would love her. During my pregnancy, I had the guilt of missing milestones for R because of me being extra tired and exhausted. It hurt to tell R over and over again that “mommy is struggling today and can’t hold you/play with you/read to you”. When I was getting closer to having our second daughter I cried over having to leave R with my dad while my husband, my mom, and I were in the hospital. I was taking away her playmate (my new service dog) and her regular babysitter (my mom).
My guilt was at an all-time high after I gave birth to our second daughter, February 14, 2019, I’ll call her “W”. I knew I was turning R’s world upside down and “forcing” her to have to learn what all was going on and have to share her precious mommy time with another one. Trying to split time evenly is hard, especially since my rheumatoid arthritis flared up right after I gave birth.
As I have been slowly recovering from giving birth, I have been slowly getting accustomed to two children, and having to learn to ask for help a lot more. This guilt will continue throughout my daughters growing up and I will have to cope with it.
I will need to breathe through their difficult questions as they grow up and realize just how different their mom is compared to their friend’s parents. I will also have to deal with the guilt that I am adding/putting more stress upon my husband with having to help raise our daughters and having to step into the caregiver role from time to time and more often as my chronic illnesses/disabilities progress.
I have realized that my guilt will come in waves and I will have to deal with them as they come. It is just like the stages of grieving that I have gone through and continue to go through as my chronic illnesses/disabilities progress. It is hard to reach out and talk to others about life, but I have learned to find someone to talk to that I can trust.
Now it’s time for me to spend a little time with W (only 12 days old) and pray that R (20 months old) doesn’t wake up calling me.
When it comes to having chronic illnesses such as chronic hip pain due to my cerebral palsy, a neurological condition that affects mostly in the left side of my body. Life can get pretty hectic, sometimes it mixes that in with having the diagnosis of depression and anxiety.
People always ask me what gets me through it. What helps you when you can’t control your body? And you can’t control what it’s doing, although you’re a writer and you love to write, but when you can’t control the days where your chronic illness makes you feel defeated. What do you do when you feel trapped in your body, because you’re in so much pain that you can’t write? How do you cope with that?
Coping When You Can’t Control Your Body
Well ever since I was 13 years old, I have been a huge fan of country music, because it tells a story of someone’s life. It takes you to a whole different world. A world where my mind could escape from the reality I’m facing at the moment, when having these episodes where I feel like I can’t control my body.
One of the country stars that help me cope is Blake Shelton. Every time I feel like I’m losing control of the situation, because of my chronic pain and Cerebral Palsy, I play his first album. I listen to the words of the song Austin it claims me down and relaxes my body.
Blake Shelton also has a gift of telling a story in such a powerful way that makes the story seem real. It makes me feel like I’m living in that storyline as the songs play.
I hear the voice of Blake Shelton, and it brings me out of my reality for just those few moments where I feel like a monster has taken over my body and it’s winning my battle against chronic pain. Plus, all of my other issues that I have to face in my everyday life.
Peace of Mind Through Music
With my condition, Blake Shelton gives me peace of mind that along the lines of my crazy hectic life with Cerebral Palsy and chronic illnesses that I am strong and I can make it through anything.
Hopefully, one day, he’ll be singing one of the country songs that I wrote for him. Since I have dreams of becoming a songwriter one day and I’m currently going to school for creative writing for entertainment, I’m working towards my goals and dreams so that the story of my journey can be told with the words I write.
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
Endometriosis can be a very shocking diagnosis for some. I knew it was coming because I’d already done research into my symptoms and pretty much knew going into my diagnostic surgery that that would be the outcome. I was lucky in the fact that I knew it was coming, my diagnostic process was quick and that I already knew I didn’t want children.
My Endometriosis Journey
I was diagnosed in 2010 when I was 21, I had been having bad periods since I had my first period at 14. I told my doctor about the painful periods, nausea, headaches and back pain. Her recommendation was to put me on birth control which I did and that seemed to help my symptoms up until I had a ovarian cyst burst and went to the emergency room. While at the ER, I was put through a series of test and after several hours was referred to a gynecologist that specialized in Endometriosis. The gynae suggested that I needed to have a laparoscopic surgery to go in and see if they could see the disease. A few months later I was in for the lap and diagnosed with stage 4 Endometriosis.
After trying many medications including Lupron and Visanne I was sent to an Endometriosis specialist. I chose to have a hysterectomy in 2013, the surgery went well and I felt better for 6-8 months after. I felt pretty much the same as I did before the hysterectomy but with some improvement. Now, I’ve been trying alternatives like cannabis, essential oils, yoga, martial arts, etc. I’ve found that movement, diet and cannabis have been my biggest and most helpful changes. Replacing some of my medications with cannabis. Watching what I eat and paying attention to how foods make me feel. Joining a martial arts gym and doing jiu jistu and muay thai have made me motivated to keep active while enjoying it.
I would encourage everyone to try and make some positive changes and see the reaction you get from your body. I love the changes I’ve seen in myself. Physically, mentally, spiritually and I feel like I’ve really started to grow.
Cannabis Activism
When your remaining options are drugs you’ve already tried and/or more surgery what do you do? I didn’t want to take harmful medications again (Lupron) and wasn’t willing to have another surgery. Cannabis was something I already knew about and refused many times. I was actually against drugs of any kind, including anything you could get at the drug store. I would only take a pain pill very rarely if I could no longer handle the pain, usually one of my bad headaches.
I started using cannabis at a very delicate time in my life. Having attempted to committing suicide because I foolishly thought I’d be better off dead. I immediately regretted it and my best friend drove me to the hospital. After I was discharged, I stayed with my best friend for a week. She introduced me to cannabis and I have never looked back.
Cannabis gave me my like back essentially. It helped all my symptoms including my severe pain. I realized I didn’t have to live in pain and there was more to life than me being bedridden, lonely, in pain, extremely depressed with no hope. I opened my mind to something new and it ended up turning into something wonderful. I feel like myself and like I can function day to day. Don’t get me wrong I still have my bad days where I stay in bed or set myself up on the couch and just veg out. Overall, my quality of life feels like it is so much better!
Many Forms of Cannabis
There are more ways to consume cannabis other than smoking it. I found that CBD products are extremely beneficial. There are so many products out there so it’s important to research what your buying. When you find out how much CBD you need daily you will see the results in how you feel. Like anything, it’s not for everyone and many not work for everyone. CBD is something that needs to build up in your system like many medications.
Using cannabis in any form should be started slowly. Start small and see how you feel. Like anything if it is not legal where you are, I am not suggesting you do anything illegal. Many places have legalized medical marijuana or legalized for recreational use. I am located in Canada where we have legalized both.
Six months ago, I was diagnosed with small fiber neuropathy and autonomic neuropathy, which is a form of dysautonomia. I had been searching for a diagnosis for my unexplained weakness and fatigue for a few years, but all of my testing was coming back normal. Every doctor I saw diagnosed me with different conditions: depression, fibromyalgia, chronic fatigue syndrome, anxiety, and PTSD. I never felt like these were the cause of my symptoms, and after months of searching, I was referred to an amazing neurologist who put the pieces together and found the true cause.
In the human body, the autonomic nerves control things that we don’t normally need to think about like digestion, blood pressure, and heart rate. Autonomic neuropathy causes all of these nerves to malfunction. Though I have found many things that help, I still experience symptoms such as dizziness, nausea, fatigue, and weakness on a daily basis. I am working hard to improve my symptoms and quality-of-life, but I know that the chances are low of my nerves regenerating.
Because of this, I have learned to manage my symptoms with lifestyle changes as well as medications. To me, these are normal things that I do every day. But to other people, these things might seem a little bit weird. I hope that by sharing these 10 things, I can help bring a better understanding to the chargies living with this condition.
Ten things that I do because I have Dysautonomia:
Fidget Constantly Autonomic neuropathy causes blood to pool in my arms and legs, so I try to move them a lot. I fidget while sitting down, standing in line, and even in bed. This keeps the blood moving around and prevents my arms and legs from becoming painful and swollen.
Drink Lots of Water Autonomic neuropathy causes me to have low blood volume, so to combat this, I drink water all the time. I always have a water bottle with me, gallons of water in my car, and electrolyte tablets in my purse.
Wear Compression Socks Because autonomic neuropathy causes blood pooling in my legs, I wear compression socks anytime I am moving around to help squeeze the blood back to my brain. They keep me from feeling dizzy and lightheaded, and they help my pain a little bit as well. Most compression socks are not the most stylish, and most of my outfits don’t look the greatest with knee-high socks. However, I put up with this since compression socks make such a difference for me.
Make Lots of Bathroom Trips Autonomic neuropathy causes my G.I. system to malfunction in different ways everyday. I get nauseous frequently, and a lot of times, food doesn’t sit well. I also have problems completely emptying my bladder, so I tend to make lots of bathroom trips in order to avoid being uncomfortable with no bathroom available.
Squat or Sit on the Floor Sometimes on bad days, I just need to sit down. This is not always convenient, like when I am standing in line at the grocery store, but it’s better to be sitting and embarrassed than unconscious. If I am shopping with friends and they stop to look at something, sometimes I will find a seat on the floor next to them. Usually, though, I just use my wheelchair so that I always have somewhere to sit and stay safe.
Avoid the Heat As much as I don’t like the cold, the heat is so much worse for my symptoms. Autonomic neuropathy can cause heat intolerance, which makes me nauseous, lightheaded, and extremely tired when I am overheated. Because my sweat glands are affected as well, I can get overheated in places that most people would find a comfortable temperature. I always carry cooling towels in my purse, but sometimes it is just too hot for me to stay.
Elevate my Legs Because the blood pools in my legs, I like to rest with my legs elevated higher than the rest of my body. This can help to resolve symptoms, and it improves my ability to rest. If I am extremely symptomatic, sometimes I will lay on the floor with my legs up the wall.
Change Positions Slowly If I move too quickly, my body doesn’t have enough time to move the blood from my legs to my brain. This is especially important when I wake up in the morning or from a nap. I spend a few minutes sitting upright, a few minutes with my legs dangling off the bed, and a few minutes standing up before I start my day. This gives everything time to get into the right place and avoid a morning flare.
Pick Things Up with My Feet Bending over to pick things up causes a lot of dizziness, so I find creative ways to avoid it. At home, I usually am barefoot and pick things up with my toes, but in public, I try to ask for help or squat down to get things. Soon, my service dog in training will be able to pick things up for me so that I no longer need assistance.
Use Grocery Delivery Autonomic neuropathy causes my heart rate to be elevated all throughout the day. This makes normal things like washing the dishes, folding clothes, and going to school a workout for my heart. If I can conserve energy by delegating tasks, I will, and getting groceries is one of my least favorite tasks. It always drains my energy, and I am always exhausted for a few days afterwards. Getting the groceries delivered means that I can spend my energy doing things that I find enjoyable instead.
Some of these things may seem a little weird or unnatural, but for those with autonomic neuropathy and other forms of dysautonomia, they are essential. They are all small things, but when combined, they make a huge difference in symptom control and quality of life.
Blythe Neer is a Chargie living well with Celiac Disease, Ehlers Danlos Syndrome, and Small Fiber and Autonomic Neuropathies. She spends most of her time at home blogging, taking photos, training her future service dog, and making unique spoon gifts with polymer clay for her Etsy shop. You can find her at sustainablespoonie.com or on Instagram at instagram.com/sustainablespoonie.
Chronic illness is like eating potato chips – you can never have just one. At least that’s true for me. I was diagnosed with Crohn’s Disease in 1995 and since then I have had an avalanche of multiple other chronic illness diagnoses. From Depression and Anxiety to Fibromyalgia and Bile Salt Malabsorption to Irritable Bowel Syndrome and Insomnia. I think the chronic nausea and diarrhea are there just for fun. I might have even missed a few, but you get the idea. I have a gamut of chronic nonsense happening writhing my body.
The Day to Day: What will flare and what won’t?!
Sometimes everything can remain in check. My bowels remain relatively calm and only give me somewhat minor issues. My depression and anxiety are held at bay with more positive things that might be occurring in my life. My insomnia gets tired and finally goes to sleep so I can rest. And I can sometimes even manage to move just enough, or just little enough, that my Fibromyalgia is mostly quiet and I don’t hurt as much as I usually do. Though these moments are super rare, they do occasionally happen. It’s never for long and never, ever predictable, but the moments do occur. And in those moments I feel like what I imagine a healthy person feels like; or at least someone less like myself.
Then there are the days when everything works against each other to cause complete and total anarchy in my body and brain. A typical day like that is one of the toughest because I’m not only fighting one of my chronic illnesses, I’m fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It’s like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.
Inside My Mind and Body with Chronic Illness
Follow me down this rabbit hole of chronic illness overload to experience what my body goes through, and how it talks to itself.
It usually starts in the early hours of the morning between 4:00am and 6:00am.
Brain: “Wake up!”
Anxiety: “Hey remember that feeling you get in the pit of your stomach when you’re going down a roller coaster? That weird adrenaline rush feeling? Here you go. Do you feel it?”
Stomach: “Ahh! What the heck??!!”
Body: “Please, I’m tired. Let’s sleep. Nothing is going on. I’m safe. I’m warm. I’m okay. Just sleep. Please.”
Anxiety: “Nope. We have things to worry about.”
Body: “Don’t wanna. Wanna sleep.” Tries to roll over but realizes it hurts. Elbows and wrists are stiff and achy. Legs feel heavy.
Brain: “Nope. Not happening.”
Bowels: “Hey, guess what’s up? I am! And I gotta go. NOW!”
Brain: “Can’t we ignore you, bowels? You never play fair.”
Bowels: “No way – gotta go – NOW!”
Body: Manages to sit up. “Ouch, my back!”
Body: “Must to run to the bathroom.” Quickly realizes everything hurts. Screams silently from every muscle and joint but knows we must make it to the bathroom or we’ll have an accident. Curses bowels.
Bowels: “We’re done. For now. Heh, heh.”
Body: “Please let’s go back to sleep now. Everything hurts.” Manages to lay back in bed and get covers on top of me.
Brain: “You can try but it isn’t going to work. I’m getting cranky.”
Anxiety: “Remember that thing that you said but you should have said this instead? Let’s think about that and replay the conversation twelve different ways over and over even though we know it will never happen. C’mon, it’ll be fun!”
Brain: “No, that’s dumb. Don’t think about anything. Just lay here and be quiet.”
Body: “Yes! Let’s sleep more.”
Bowels: “NO! Let’s go again!”
Body: I’m so tired. I hurt so bad. Okay, I guess we’re doing this. Throws covers off and runs to the bathroom again.
Brain: “Maybe I am tired now. But now I hurt. I’m going to ache and throb now.”
Depression: “I hate everything. I wish we could just hide under the covers and never get out of bed again. Like, ever.”
Body: Drags self back to bed. Attempts to get comfortable.
Stomach: “Hello? Yes, I still hurt. I’m still here. Here’s a bad cramp because I’m feeling left out.”
Anxiety: “What if…”
Brain: Throb, throb, throb.
Body: “Drink water. I need water. I’m dehydrated. Get up and get water.”
Stomach: “Don’t do it. I’ll reject any sort of hydration or nutrition you give me.”
Bowels: “If Stomach doesn’t reject it I will. Oh hey, let’s go AGAIN!”
Body: “Ugh!” Runs to bathroom again. “I’m so tired. I just want to lay down on the floor. That bathroom rug looks comfortable. Let’s lay down.”
Brain: “That floor is going to hurt so bad. You might get down there but how are you going to get back up?” Throb, throb.
Bowels: “Oh we’ll make sure she gets up. Heh, heh.”
Body: “Fine, forget the floor. I’ll go to bed.” Finally gets back to the bed and gets somewhat comfortable. “Why do I hurt so bad? I did nothing yesterday that would cause this pain. I need a hot shower. Hey Bowels, how long until the next …. oh!” Runs to the bathroom again.
Bowels: “Yeah, we’re doing this every fifteen minutes. No shower for you today!”
Body: “Meh, I’m too tired to shower now anyway.”
Brain: “What time is it now?” Throb, throb. “Oh, we’ve only been awake an hour? It’s going to be a long, bad day.” Throb, throb, throb.
Depression: “I’m so tired of this. No one possibly understands how bad this is. No one cares. This isn’t living. This is terrible. If we lay here still enough can we just stop breathing?”
Anxiety: “But what about all the things you need to do? What about all the things you have done? Let’s stop and reassess everything in your life right now. Hey, remember that time in third grade when…”
Body: “Hey, I’ve been hurting and just want to sleep but no one is listening to me!”
Stomach: “I don’t feel so good either. Brain pain is making me feel sick. I think might throw up.”
Body: “Oh no, I cannot handle retching right now. It’s going to hurt so bad and it already feels like someone took a baseball bat to my back. Let’s try to lay back down.”
Bowels: “Haha! No!”
And so on and so forth throughout the day as the never ending cycle of what happens when all my chronic illnesses come together and work as one, slowly feeding off of each other in another attempt to destroy me. It’s excruciating and it’s exhausting. But somehow, every single time I make it through. These days are the worst, and even though at the time when my body is continually arguing with itself, I somehow always know that I will make it through. The next day might not be so bad, or the day after that. So I hang on, just one more day. Because eventually, I will get one of those good days where all my chronic illnesses play nice with each other. And those are the best days.
Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Jenni is a nurse, however is unable to work due to struggling with Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea, Fibromyalgia, Anxiety, Depression, Insomnia and PTSD. Learn more about Jenni and her guts at http://JennisGuts.blogspot.com.
So you have decided to get to know someone new. Whether it’s through a dating website, a mutual friend, or something of the like, it often raises the question of how soon is too soon to tell the other person that you have a chronic illness. Tell them too soon and they might back away before you can get to know them, but if you tell them too late they might get upset with you for not disclosing the information sooner. So when is the best time to tell someone about your illness?
One of the things that makes this topic so tough to discuss with new people is the fact that everyone is different, and therefore there is no perfect formula that will work every time when opening up initially. Lord knows how many times I’ve sat in the car before a first date and wondered whether or not I should use my crutches or walker to get into the restaurant. It’s not every day a 23-year-old shows up to a first date using a mobility aid. I’ve been on dates where I’ve shown up using my crutches, and next thing I know the guy is telling me that he doesn’t see a future with me because he doesn’t want to be a one income family. On a first date! But there are times where I’ve pretended to be normal and healthy, and then on the fourth or fifth date talked about my disabilities and completely overwhelmed the other person, which effectively cuts them off or closes them up. It took a lot of trial and error for me to figure out what works best in my situation.
Online Dating Tips
When it comes to my online dating profile, I disclose right off the bat that I do struggle with physical disabilities and mental health issues. I don’t go into any detail further than that and usually let them make the first move on approaching me about it. People who have a bigger concern about being with someone who has a physical disability will usually ask questions within the first few messages, whereas the people who don’t seem as concerned about it will wait until much later to bring it up. When people do come to me asking questions, I do my best to answer their questions directly and as efficiently as possible (without giving so much information that it overwhelms them). If someone asks me about how much activity I’m able to do during the day, I’m usually honest about the fact that there are some days that I can do more than others. I like to let them know that I do have a gym membership and enjoy being active when I can, but if I’m too active on any given day, then I might be out of commission for the next few days to recover. I like to tell them that I do love going on walks or going to events like Comic-Con or the Renaissance Faire. I also tell them that there are some days I can barely get out of bed and have to use my walker just to get to and from the bathroom. I do my best to emphasize the fact that I am an independent person who is not looking for a caretaker that doubles as a girlfriend or boyfriend.
New Friends
When I’m meeting new friends and don’t have the luxury of being able to state on an online profile that I have disabilities, I usually end up being very upfront about my disabilities. A quote that I have taken to heart when it comes to this was said by the late, great Dr. Seuss: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I have been through a lot of ups and downs in my life, and I have learned that this saying really is true. The people who have stuck by me when I’ve been sick and struggling are the people who didn’t mind in the first place that I had disabilities. And the people who had issues with me being disabled when we first started out getting to know each other ended up not being there for me when I needed them most. As discouraging as it is to see these red flags of unsupportiveness from people when you get to know them, it’s better to know early on than to put the energy into the relationship and end up getting hurt. At the end of the day, it’s important that you stay true to yourself and do what you are comfortable with. Healthy relationships rarely grow from crossed boundaries.
Whether we like it or not, are chronic illnesses or a part of who we are. There’s no way to ignore them or hide them forever. It’s important that you take your time easing people into the reality of your life if they have not had experiences with people who have chronic illnesses before. The life that we are forced to leave because of our chronic illnesses is very overwhelming, especially for new people. It’s often upsetting to hear just how rough we have it. But slowly, piece by piece, strangers can turn into friends when they realize that your chronic illness is just a part of who you are and that you are a fabulous person no matter what. You’re not defined by your illnesses or your disabilities, and the people who truly matter will see that shine through.
Written by: Ren Kaspar. She is a spoonie struggling with POTS, hEDS, and gastroparesis, among others. She writes her own blog (ungluingstigma.com) and is an outspoken activist on Instagram (@ungluing_stigma). When she’s not managing her illnesses full time, you can find her volunteering with Crisis Text Line or working at build-a-bear.
