Warning: This article discusses mental illness and thoughts of self-harm.
Like many people, I’ve always enjoyed watching films. Films tell us a story about someone’s life and struggles and shows us how they were able to overcome those obstacles that they had to face. About a year and a half ago, I had gone through a rough patch in life where I didn’t know where to turn to. I was going through college and my first real break up, along with knowing that I was going to have to live with Cerebral palsy for the rest of my life.
I didn’t know where to turn to as nothing I did seemed to help me cope with the many different emotions that I was facing at the time. Then a friend recommended that I watch ‘Perks of Being a Wallflower’ which is about a high school freshman named Charlie who’s an aspiring writer who loved journaling about his everyday life but has a difficult time handling depression.
My connection with the main character:
From the minute I first saw Charlie on my screen I automatically connected with him and what he was going through as someone who was at that point in her life where everything felt very confusing. I had thought that I had everything figured out and I was now adapting to changes at the time that changed my outlook on life.
While watching ‘Perks of Being a Wallflower’ I felt as if I was Charlie in the movement, and he was speaking to me directly. I related to him as he was going through being the outcast of his fellow classmates because he was the one who was not ordinarily. This is just like myself since I have Cerebral palsy and use a wheelchair as my legs. So, I tend to be the outcast of society.
At times this could all be too much for me to handle. Watching ‘Perks of Being a Wallflower’ allowed me to be confident in my life and the person that I am, as well as the life story I have to tell.
How what this movie taught me applies to my life:
‘Perks of Being a Wallflower’ reminds me that despite the bad chapters in my book I have to keep writing my life story no matter how bad the chapters are. It reminds me that it’s just one bad chapter, it’s not my whole life story. And just like Charlie overcame his obstacles and challenges of being an outcast with very little confidence, I am reminded that I’m not alone and I will overcome anything that comes my way.
Watching ‘Perks of Being a Wallflower’ also helps me forget about the lack of mobility I have on the left side of my body due to Cerebral palsy, which can lead me to feel suicidal at times and feel trapped within my own mind and body.
Watching this film takes away any negative thoughts I might have about myself and my abilities and helps me to continue living my life as a disabled woman with Cerebral palsy. I will be forever grateful for ‘Perks of Being a Wallflower’ and its message.
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.
IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.
No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.
Finding my “new normal”
Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.
I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.
I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.
Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.
Finding support
I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.
We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.
It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.
I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.
People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.
About the Author:
Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.
Being diagnosed with a terminal or chronic illness can be disorienting and disappointing. But as you accept it with time, you will learn to cope with your illness by making changes in your lifestyle. Stress affects everybody, and suffering from long term health conditions may make you vulnerable to the struggles stress can bring. You may appear to be absolutely fine on the outside, but inside, you might be torn apart by the stresses of being constantly dependent on someone for doctor appointments or having to clean up, go outside, run errands, etc. To persevere the spirit to live must be there. No matter what you are suffering from, being aware of the conditions and taking precautions can ease the everyday struggle. The more positively you can handle the struggle, the easier it will be to take care of the challenges.
My 7 ways to cope with a chronic condition:
Acceptance:
Often a lot of turmoil lies in mind. Accepting being terminally ill or having to suffer from a lifelong condition such as diabetes or thyroid issuestakes time for acceptance. Once you’ve accepted it, it puts your mind at ease and allows you to look for ways to combat the disease while living your life. Take your time but accept your current situation as that is only when the mind will start to look for a solution.
Look for support:
We all need people that support us when we go through a tough time, and when experiencing illness, having a strong support system is half of the journey. Having your friends and family with you during these times can boost up your confidence. Do not worry about the toxic relationships in your life and only focus on people who add positivity to your life. Value the people who love and care about you and make them a part of your inner circle. Social media is also a great place to get support from those experiencing similar conditions to you.
Gain more information about your condition:
When you are suffering from a chronic condition, it is always safer to have a thorough understanding of the disease and its conditions. If you have doubts and questions, don’t hesitate to ask your doctor. You may also research online or look for support groups to gain more knowledge about the condition. Keep track of the symptoms your body exhibits and get to know your body better. Analyze methods that may help to manage symptoms related to your condition and share details with your healthcare provider.
Manage symptoms of depression:
People suffering from chronic illness go through a wide range of emotions. You may feel weary, drained out, and be in a dark place due to the condition and the symptoms you experience. A lot of people miss out on their regular doctor’s appointments and skip medications, which ends up in further aggravating the condition. It is important to be well informed about the symptoms of depression and how to tackle them. Speak to a therapist if necessary.
Take your medications on schedule:
It is often hard to remember to take medication, it’s even harder to remember if you have to take 10 of them. Set a reminder or an alarm on your phone to remind you to take your medicines on time. Remember the names of the medicines you are taking and get a deeper insight into the drugs you are recommended. Speak to your doctor to learn more about each drug and its side effects, why you’re taking them, if you may discontinue them in the future, etc.
Live in the present:
Suffering from a lifelong disease can make you worry and fear the future, but the best way to live one’s life is to focus on the present. Always follow the rule of ‘Be Here And Now.’ Focus on what you’re doing; if you are eating, be conscious of what you’re eating, what color food you are eating, etc. It keeps the mind focused on the present activity and prevents it from wandering off in unprecedented directions.
Find something you love to do:
Practicing a hobby is therapy in itself. Whether it’s painting, gardening, or reading a book, find out what you like and do it. Hobbies can bring joy, a feeling of productivity, and a distraction from the suffering of real life.
Coping with a chronic illness can be difficult, but there are methods that can make this easier. Live in the moment and take baby steps every day. Changes don’t happen overnight, but as long as you make progress, you’re doing great.
About the Author:
Henna is a wellness lifestyle writer. She loves sharing her thoughts and personal experiences related to natural remedies, Ayurvedic, yoga and fitness through her writing. She currently writes for How To Cure. She can connect with others experiencing health concerns and help them through their recovery journeys through natural remedies.
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.
When it comes to experiencing grief, I find this quote by Terri Irwin to be very accurate: “Grief is never something you get over. You don’t wake up one morning and say, ‘I’ve conquered that; now I’m moving on.’ It’s something that walks beside you every day. And if you can learn how to manage it and honor the person that you miss, you can take something that is incredibly sad and have some form of positivity.”
A string of thoughts swirls around my head when I think about my friend Daniel’s battle with brain cancer, on top of having Cerebral Palsy as a fifteen-year boy with so much ahead of him.
I think things like: Another year has gone by without you, but it feels like just yesterday that you said goodbye to this world and the chapters of your book came to an end. But there’s not a day that goes by that I don’t think about you or the battle you faced. You were very brave and courageous and for that, I’m proud of you.
It’s been nine years since he’s been gone but, in all seriousness, it still feels yesterday.
Survivor’s Guilt
Within
the first year of Daniel passing I struggled to come to terms with my grief and
that cancer had taken my best friend, who was like a brother to me. He was my
biggest supporter next to my mom. I became very angry at the world, to the
point where I started to become more rebellious. As a result my grades started
to slip.
I was finding my freshman year of high school so difficult that I started to skip classes. I didn’t care about my future. I would often ask myself if there was anything I could have done to save Daniel’s life. I would even wish that it were me who got cancer instead of him.
The guilt
was isolating. I couldn’t go out and do the things I enjoyed like going to the
bookstore or attending football games without feeling guilty about it. I would
often say things like “too bad Daniel can’t be here
right now”. To avoid feeling like this I would stay home as much as possible.
As you can imagine, this was not good for me. At all. I would post about him every day on social media, writing about how much I wanted my brother back. A part of me hoped God would read my post and say: “Here’s Daniel back”. It was like I had separated myself from reality as a way to cope; away from the reality that Daniel was gone and that I had to move on.
Moving On:
Moving on wasn’t easy by any means. A year after Daniel’s passing, I decided I wanted to support children fighting cancer; so I would send toys to the kids in Hospitals. It was a good way to help me cope with my grief as well as setting aside the anger I felt.
Moving on from such grief requires a lot of bravery. “There is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think.”- Winnie the Pooh
A year later I went on to write James Ticking Time Bomb in honor of Daniel and his battle with cancer. I’ve been writing with the aim of bringing awareness to childhood cancer ever since.
Though I’ve Moved On, I’m Still Grieving
It’s nine years later and I am now 24 years old and in college. I’m doing what I love most, which is spreading awareness for causes that matter to me through writing, the one thing that helped me cope the most with the grief of Daniel’s death. I still rely on writing as a coping mechanism to help me get through my grief as an adult. So now, every time I open up my laptop and begin writing, it serves as a reminder than Daniel’s spirit is always with me, and that I’ll see him again someday.
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.
I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.
My Diagnosis
What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.
Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.
The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.
We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.
The Reality of My Stay in Hospital
Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.
Being chronically ill, I spent my leisure hours in the confines of my
four-bedroom walls. I was always a bit stir crazy, craving a change of scenery.
But when I was finally discharged after a gruesome eight months, I celebrated
the victory of returning to the place I once complained about so often. The
nurses cheered as I exited the oncology ward.
Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.
However, I knew that I had the power to eventually find myself again.
The Judgement I Receive from Healthy Outsiders
Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.
The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.
My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.
About The Author
Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.
Chronic Illness tests even the strongest relationships; causing some to fail. This letter is to all those who have been through breakups. May you find your source of light.
Dear Ex,
Hi, its me, your chronically ill ex. I’m writing this letter to tell you all the things I never got to say.
First, I want to thank you for being with me through the rough moments my health caused. With you by my side, the hospital stays, surgeries and emergency room visits were a little less terrifying. I want to thank you for holding me on the days where I couldn’t get out of bed. Thank you for making me smile whenever all I wanted to do was cry.
I often wondered if I was cursed with all that’s wrong with me, but you were the constant reminder that there were still good things in life.
I realize it isn’t easy loving someone who needed so much help, but you never made me feel like any less of a person. You always made me feel as if I still mattered. My illness was something we both battled. You were my partner, my ally, my best friend.
As my body changed, you never made me feel any less beautiful. You promised me the disease could never make me any less beautiful, because the beauty you saw came from my soul.You never complained about staying home with me instead of traveling the world and visiting theme parks like our friends did. Our paradise was our time together. I didn’t have to travel to exotic places, because my whole world was beside me.
Even though we are not together now, I want to thank you for being a light in the darkness. I always attributed your presence to what saved me from utter darkness and despair.
I saw you as the source of light in my life.
And then I realized something! When there is much deep, pitch- black, darkness any speck of light seems brighter. My illness was so devastating it created so much darkness in my life, of course you seemed to be the brightest light in the universe.
But you didn’t save me. You didn’t shield me from the darkness. I did. I saved me. I kept my own internal light burning. I held onto the light within my soul,
When you left, I felt like the only light in my life had gone out. But I quickly saw that I had always been holding onto my own light all along. My spirit inside me was what kept me alive all these years, not you. As much as it hurts to see you truly abandon me, it made me realize that I never really needed you at all. The light I thought you were came from me the whole time.
So, I wish you well, former love. Thank you for helping me realize the power within myself.
The intersection between parent and caregiver crosses many times, much like a tangled ball of yarn. As mothers, we know instinctively that care-giving is a part of our responsibilities. From the moment that your baby is pulled from your womb and put to your breast to nurse, we realize our needs no longer come first. However, none of that was preparation for the job of being a full-time, chronic illness caregiver.
As if parenting a tween and teen is not enough of a challenge!
It has been a rough road over the last eight years since my daughter’s mononucleosis diagnosis became a chronic illness journey. As my baby girl prepares to turn eighteen years old, our roles are shifting again. I’m simultaneously looking back into the past at lessons learned, and into the hope of the future. As I do this, there are 7 things I want my daughter to know:
The Author and her Daughter
1. I Can’t Help but Blame Myself
A mother’s job is to protect her child. My goal was to keep you safe, healthy and happy. In many ways, I feel I was a failure in all three. The truth about what causes POTS is a mystery to even those that specialize in it. That, however, does not stop the barrage of thoughts that swirl around my head. Was it bad DNA? Maybe it was because you were not breastfed longer? Or was it the food I gave you? Was it that kind of sketchy, dirty movie theater we visited? Or maybe that one babysitter was sick? Could it be because we moved around too much in your childhood? Was it because I was not paying enough attention to while I pursued a Master’s Degree?
Along the way, I have asked myself these questions and a million others. as I tried to figure out what mistakes I could have made, in order to warn others. Nobody really wants to be a chronic illness caregiver. I see preventing others from enduring that fate as a worthy goal.
2. I Would Take The Illness From You If I Could
We hear a lot about parents begging their personal god to give them their child’s illness. From my perspective, this is not some act of sacrifice. It is purely a selfish desire to want to end your child’s suffering. There is nothing worse as a parent than to see your child hurting. I felt her pain in my bones and in my soul. Anyone that has been a parent knows that this is true. That being said, it has been my privilege to be your parent. If there is such a thing as divine purpose, mine was to help you survive this affliction. Being your chronic illness caregiver was the most important job that nobody every applied to do.
3. There Was Never One Second I Wished I Was Not Your Mom
When that old pediatrician counseled us the only option was to keep you comfortable until… (he trailed off before finishing the sentence), every fiber of my being screamed “no way, not my daughter.” He was wrong about the chronic fatigue syndrome diagnosis, for the record. When the same doctor called me to tell me that I should not let your illness interfere with my marriage, I cried. That was when it became clear he was not going to be the doctor to help you. I shudder to think of a lesser version of me being your mom. Another mom might have accepted his answer. Instead, your mom cut the average six year diagnosis delay in half.
The Author’s Daughter
4. I Never Believed You Would Not Get Better
Not every piece of advise we were given was great. Some medical providers hurt more than they helped, and we realize this now. But not trying was never really an option. We have heard everything doctors say when they do not know what to do.
The image of one-week-old you laying on a baby blanket on the floor next to her mother while she took a psychology final was fuel all these years. You were unreasonably calm and happy for a newborn. It was as if that infant, you, were an old soul that knew we were on the same team. Holding on to that vivid image has been a reminder that your purpose on this planet is greater than any difficulty you faced. The triumphs were worth it.
I still do not believe that there is no hope for you. Maybe in some ways, it would have been easier to accept this faulty idea. Easier for you, for me, and the whole family. But easy has never been the way our family worked. Overcoming obstacles was a way of life while growing up for your dad and I. In some ways it defined our family. How else would two poor kids put themselves through college while working and raising a family? Why would this be any different? It was this belief that had us try every kind of treatment or therapy available.
5. I Will Never Give Up
Whether it is essential oils, prayer, diet and nutrition, exercise, voodoo, celery juice, or a magic pill they have not yet created, I have a solid belief that a cure exists. This belief of mine is stronger than any doubt. Yes, the experts say Dysautonomia has no cure. They used to say that about a lot of diseases and illnesses, though. Just because the world has not figured out the answers yet does not mean these answers do not exist. Facts about POTS are limited. Faith, on the other hand, is unlimited.
So, late night research will continue to replace my worry. Listening to Podcasts about alternative wellness will be my go-to recreational activity. Me reading blogs like The Unchargeables more common these days than the old favorites like fictional novels and gossip magazines. Advocating for you and others is a purpose filled mission. It is all part of the job of a chronic illness caregiver. Thank you for humoring those articles sent at three am. Thanks for trying the supplements, prescriptions and every other crazy idea we have tried. My hope is that you never give up either.
6. I Am Only Human
When I get tired or cranky or completely lose my $&*! it is not you I am angry with. Never was it you. It is the illness, the doctors, the medical system as a whole. Yes, it is with every intention that we live with a glass half full mentality. Positive vibes are the only choice we can conscientiously make as a chronic illness caregiver. But there are those days that my own health wears down, when talking to an insurance provider, or paying a doctor’s bill for something that did not really help get the better of me. It becomes necessary to charge my own batteries.
Keen awareness that your mom is all you have some days is not always enough to overpower the very human body and mind. So, hang in there while I put on my own oxygen mask. It is for your own protection that self-care has to come first sometimes.
7. Letting Go Is Harder Than Holding On
Now that my daughter is about to enter the age of legal adulthood, we are finding ourselves in unfamiliar territory. The realization that it is time for changes has set in firmly. In many ways we are ready; in others, not so much. The legal stuff, like the responsibility to provide health care coverage, is easy. The technical stuff like obtaining a driver’s license to get places she was normally chauffeured to is something actively being addressed. The physical stuff like coping with meeting the requirements of self-care during a flare (or when too fatigued to make it down the stairs) is not as clear cut. Taking steps to address the financial stuff like finding a job is a daily effort.
Out of all of it, the emotional stuff is the hardest. Saying “no” has always been difficult to do. Even before chronic illness was a part of our lives, I was the mom that tended to do too much for her children. Finding the balance between providing support and encouraging independence is more complicated for the parent of a child with a chronic health condition than it is for those with healthy adolescents.
There are some things that I know are certain. Katie’s resilience and strength have been proven time and time again. Her spirit is strong. She is wise beyond her years. She has strong goals. There is no doubt she will live her best life, one step at a time.
About the Author
Author with Daughter
Tami Madden has been a regular volunteer with The Unchargeables community while 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 at this link here.
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.
In November 2008 I found out I was expecting my first child, and both my husband and I were over the moon. Life was peachy… Until I started suffering from strange symptoms, which at first I put down to the pregnancy. Slowly but surely the symptoms worsened. I was dashing to the toilet over ten times each day, losing blood, and was in lots of pain around my stomach and back. I became terrified that something was wrong with my baby. I went to visit my GP, who quickly came to suspect that I may have Inflammatory Bowel Disease. The confirmatory tests could not be done due to me being pregnant, so I was given foam enemas to help the inflammation. I gave birth to a healthy baby boy, and could then finally be booked in for the Colonoscopy I needed in order to reach a diagnosis.
My Diagnosis
In late 2009 I was diagnosed with Proctitis, which is a form of Ulcerative Colitis affecting the lining of tissue of the inner rectum. I initially kept it under control with medication the doctor offered as the first port of call, and because my disease was mild at this point it worked. Naively I totally underestimated the severity of my disease, and I thought my medication had cured me. I often didn’t bother taking it and generally did not look after myself. I ate too much of the wrong things, drank too much and weighed a lot more than I should have.
Fast forward to 2015 and I became incredibly unwell. I was diagnosed with Pan Ulcerative Colitis which meant the disease was now throughout my entire large bowel and I was flaring terribly. I became housebound and was no longer able to work as a Forensic Science Lecturer, which is a job I adored and had worked so hard for; I had just achieved promotion. My consultant put me on a biological drug treatment called Humira, where I had to self-inject weekly at home.
After a while, it was clear the injections alone were not completely working. I felt a bit better but still not right. I was still not able to go out for long periods. After trying many different diets which didn’t work I decided to try to adopt a plant-based lifestyle. The combination of my new medication and ditching dairy and meat worked. I got my life back, I lost weight, and I could go out with my family again. I even dared to go on holiday. However, I had lost my job, a job I had spent effectively five years qualifying for and just having qualified with my masters, this was a huge blow.
A Fresh Start
I couldn’t see myself doing anything other than teaching, but I had to
try to remain positive. I clung on to the fact that not working meant I could
be there for my children during the school runs, the bath and story times, and
all the school plays and assemblies. I also had the exciting thought that I
could potentially do something for myself, something I had always dreamed of
doing but had never thought was possible.
I decided to go for it, and thought ‘what better way to earn a living than to work doing something I love?’ Clearly, I love food… (a little too much, but I’m working on it). So far I’ve lost four stone but still have two to go. I set up Glow, a meal delivery business, in January 2017. After a slight blip with my medication after it failed in October 2017, I seemed to settle on a new regime of eight weekly infusions with a drug called Vedolizumab that was administered at hospital. Again, I felt well, the combination of a plant-based diet and the vedolizumab made me feel great. I continued to drop the weight and found myself falling more and more in love with the vegan way of life! I have now switched all beauty products, cleaning products and clothes over to cruelty free brands and even my children decided to come on board in February 2018 and they became (mini) vegans too.
I was so happy with my new-found wellness and lifestyle, I should have known it was too good to be true… Once again, my medication failed! It also left me with horrendous joint pain which was later diagnosed as Inflammatory Arthritis, and also Erythema Nodosum, which is a painful condition where the fat cells under the skin become inflamed. This results in tender, red lumps, usually on the shins. In my case both my shins became terribly inflamed and painful. Once again I had had to face losing the career I had worked so hard for and had built up to a point I was very proud of, simply because I couldn’t stand for periods long enough to complete my cooking and I couldn’t leave the house to complete my deliveries.
A Fresh Start… Again
I became so poorly in December 2018 that I decided to cease trading with my meal delivery business, thinking I could start up again when I felt better and was settled on new medication, or having had surgery if it was necessary. These plans were not meant to be, in January 2019 my Dad who had suffered for many years from Parkinson’s and Vascular Dementia passed away. Despite him being poorly, his passing was still a huge shock as he had been physically well up until only a week or two before he was taken into hospital.
When such a life-changing event happens, it makes you re-evaluate your life and what is important. I thought a lot about what Dad would have thought about the situation, and I had found myself in and listened closely to the opinions of my close family members. I realised I had been continuing with my business far longer than I should have, simply to keep up appearances. I didn’t want to lose face and for people to think I’d failed. When Dad passed away I realised I could not give a damn what people think anymore! I needed to do what was right for me and my family. I knew I needed to create a career that works for me, one I could still run from home but could do sitting down, or even laying down if I needed to. But the question was, what?
I have always enjoyed reading and watching other people’s blogs, facebook pages, and inspirational talk videos and wondered if it was something I could try myself. I was lucky that I had made a friend in the chronic illness world who runs the wonderful blog A Balanced Belly, a blog all about Jenna’s life with Crohn’s Disease and how she helps her gut health through a gluten and dairy free diet. After chatting things through with Jenna I decided to give it a whirl, what did I have to lose?
I still needed to earn a small wage, so I started buying and selling clothes, again something I can do from home. I set up my little blog House of Herbivores, which is all about life as a mum to vegan children. I share plant-based recipes, review vegan products, and also chat all things Ulcerative Colitis too. My recipes prove really popular with vegans and non-vegans alike, as the meat-free food movement becomes ever more popular and families are incorporating more and more meat-free meals into their weekly menus. It’s very early days, but things seem to be going really well. I have had lovely feedback on my fledgling site and have had my writing published on other blogs. My aim is to be able to monetise my blog in the near future, but I am still very much in the early stages of my plans.
It has been quite the journey over the last ten years with Ulcerative Colitis. I count myself as incredibly, incredibly lucky. Yes, I have been diagnosed with a chronic illness, but that does not define me! Over the last ten years, I have also had two wonderful, intelligent and compassionate children. I qualified as a teacher and completed my masters (yes it nearly finished me off but that’s beside the point, and is a story for another day). We have moved into our forever family home and added a silly puppy dog into our family. I have made such happy memories with my family and friends, been on holidays I will never forget, and have made new friends thanks to Colitis and Veganism too.
I am constantly fighting for wellness and will never stop.
I am a mother, wife, daughter, sister, aunty and a friend. That is what defines me, and it is for those wonderful reasons that I will get through the challenges that inevitably lie ahead on this crazy journey that is chronic illness.
Always try to find the positive.
Emma is a freelance writer and cook who created the blog House of Herbivores – a vegan family blog. Emma was inspired to switch to a plant based lifestyle three years ago for health reasons as she suffers from Ulcerative Colitis, inflammation of the bowel. Emma shares her family favourite recipes, vegan product reviews, tips and tricks for the new vegan and insights into life as a vegan family.
