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Epilepsy
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Focus on how powerful you are.
There are people in this world who like you, love you, and have judged the heck out of you. People are going to see you the way they wish to. Do not try to interfere with that. But, I want you to have the ability to see you the way you wish to. And I want you to see a beautiful soul who has overcome so much with elegance and resilience .🩷.
-Danny Gautama
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📚 🏊🏻♀️ “Breathing Underwater” by Abbey Nash 🏊🏻♀️📚
I thoroughly enjoyed this book. Ever since I saw the description, I have wanted to read it. It’s rare that there is a book about a health-challenged protagonist who competes in sports. Especially since the sport was swimming, I was intrigued, and this book did not let me down.
Tess is a teenager who swims competitively at her school. She is one of the top swimmers on her team. However, when her frenemy invites her to a sleepover and Tess has a seizure, her life seems to go downhill. She is diagnosed with epilepsy and eventually begins to learn what is really important in life.
My favorite part about this book is that Tess finds a way to do what she loves—swim—in spite of the obstacles her epilepsy presents. I think that’s a really important message that people with health challenges can still do what they love and achieve their goals, even if it looks different.
I also liked that the novel gives a lot of information about epilepsy without sounding like a textbook. The information is presented through Tess’ experience, which was really interesting. The novel was educational for me because I didn’t know much about epilepsy before I read the book.
The information about epilepsy was also very well-written because the author has epilepsy herself.
Overall, I would recommend this book to anyone who loves swimming; there were a lot of references to the sport included. This was an inspiring read and I’m glad I read it.
Here is the synopsis:
In this slice-of-life, sensitively written novel, a teen girl grapples with a sudden epilepsy diagnosis, all while figuring out a new crush and an uncertain future. Seventeen-year-old Tess Cooper lives by three train hard, study hard, work hard. Swimming is her best chance at a college scholarship. It’s what her parents, her coaches, and even her best friend expect from her—and Tess can always deliver. Until tragedy strikes. Tess has a seizure, and her world suddenly becomes one of doctor visits, missed practices, and a summer job stuck behind a counter—not sitting high in the lifeguard chair like every year before. Instead, her spot goes to new guy Charlie. Sure, his messy hair and laid-back demeanor sends Tess’ heart racing, but this isn’t really the time. She’s got to focus on getting back in the pool—regardless of what her doctor or anyone else says.
📚 Happy reading! 📚
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Back Pain to the Max
Hi. I have a slew of health issues for 30+ years now, including Crohn’s, epilepsy, endometriosis, fibromyalgia, migraines, history of TIA strokes, history of reversible cerebral vasoconstriction syndrome, POTS, along with a new, undiagnosed auto immune disease that they cannot figure out yet.
Recently, I have had a series of bulging discs occur in my spine (currently at 6 with 4 compressed nerves) that they have marked as degenerative disc disease. Upon my neurosurgeon inspecting the MRIs of my spine, he said that it is autoimmune related, degenerative in nature, but that he has no idea what it is, cannot fix or help it, cannot operate on it, and cannot stop the pain.
At this point, the pain is so intense that even with an opioid patch, Norco, and a muscle relaxer, I am still shaking in pain. Does anyone else have anything of this nature? Does anyone have any idea what this might be? I know that my doctor is currently toying with the idea of Stills Disease One of my unknown diseases could be as well as the possibility of mast cell activation syndrome, being present.
Any help is much appreciated! Thank you so much.
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Advocacy Project
I am working on an advocacy project, dealing with treatment of chronic illness patients/auto immune patients in the emergency room. If you would be willing to share some of your stories of being mistreated in the emergency room, please comment or contact me.
#ChronicIllness #Fibromyalgia #MultipleAutoimmuneSyndrome #CrohnsDisease #Epilepsy #Endometriosis
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Who Am I?
I was born by Cesarean section after my mother endured a traumatic labor of 52 hours. As preposterous as this sounds, it was confirmed on my birth certificate. The doctor who rescued me from midwives predicted that I would struggle throughout life because of the stress. I had vision and hearing troubles early on. I was slow in comprehension and memory. I struggled with confusion between reality and imagination. I had a heart murmur. But eventually I grew stronger and smarter. I quickly began gaining weight at puberty and never stopped, and developed asthma that was never treated. I got my GED instead of graduating, and I never finished college. My dream of being a famous doctor was dashed when I couldn’t master prime factors. While battling debilitating migraines, I rotated through a handful of ungrateful suitors, until I found the love of my life who accepted my marshmallow form and crazy mood swings. We celebrate our 25th anniversary this year.
During the time in between, I struggled being a Christian in public school where everyone else’s rights were more important than mine. I felt alone and abandoned that there was no one else like me. All my shortcomings and failures seemed center stage, even among relatives. I was diagnosed with depression at 16, anxiety at 19, polycystic ovaries at 25, miscarried at 27, first child at 28, bipolar at 30, second child at 32, suicidal at 33, diabetic and third child at 34, and he was diagnosed with Cerebral palsy. I had my fourth child at 36 and miscarried again at 37. My youngest son was diagnosed on the same day with Type 1 Diabetes at eleven months old and nearly died. My oldest daughter was diagnosed with Type 1 Diabetes a year later at nine years old. We began homeschooling that year after she got out of the hospital with a virtual school.
The following year my second son began home schooling and the same year I lost my father to Parkinson’s and diabetes. The year after that my third son started homeschooling. The next year my husband sustained a head injury and became disabled. Within the following five years, my oldest son was diagnosed with ADD, I developed GERDs and high blood pressure. I was diagnosed with Spectrum Bipolar with mild epilepsy. All the medications led to a metabolic shutdown and six years ago I developed lymphedema. Last year I was diagnosed with gout and now I’m hobbling about with a cane and applying for disability, while homes schooling my youngest two sons. The older one graduates from high school this year. The oldest kids graduated from high school a few years before, but COVID delayed their college plans. Then their medical issues interrupted their career plans.
Sometimes life seems hopeless. Sometimes I want to just cease to exist. But then an amazing thing happens. I begin seeing my children’s smiling faces, hearing their sweet voices and a stirring in my heart inspires me to get up and face the day. They are my jewels. And they are the reason God gave me life, so that they may live for Him.
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Change of Season
On a bus going into town the other day, I saw sunlight burst through the trees like a searchlight, revealing buildings I didn’t even know existed there on the hillside because winter's darkness usually hides it. Also because it was warm, I felt like looking instead of huddling up from the cold as per normal under these hostile conditions. Summer and winter by their very natures change behaviour and are complete opposites. Summer’s warmth and light leads us out into the external world, through longer days and making our surroundings more hospitable through heat as winter’s cold causes us to withdraw contact and huddle in the eternal night of the season (seasonal affective disorder or S.A.D. crushes some people through the winter as a depression that only warm sunny days can relieve and carry us into a state of elation: bipolarity is therefore seen in these alternatives as manic-depression.
Winter makes us want to hibernate and sleep the cold away as Spring’s warmth and lengthening daylight, draws us into rebirth in the world we’ve been avoiding because of its icy grip on our souls. Accumulation and discharge is how I would term it or the build up of energy reserves over the winter and their release through summer’s warmth and longer days. Think of it like this, a seed contains the concentrated form of the adult plant, lying dormant during the winter that empties itself out into the world during the spring / summer season, when the introverted thinker becomes the actor open to the stage of life again, participating in all the motion and emotion interaction brings; the dreamer awakes and the body reveals itself.
One particular symptom I have noticed is that I am waking in the early hours of the morning, having sort of cramping in my legs and a return of joint cracking, which had disappeared over the winter period. It's making me wonder, after twenty five years of migraine attacks, is this some kind of fitting like epilepsy but milder and also seasonal (see The Electric Universe theory by Wally Thornhill et al)? Perhaps it is the dynamo effect of motion building up something like static charge? I am feeling more breathless but I am doing more than I did and would do during the winter because of the conservation of energy as a necessity. I am also suffering from trapped wind, which is not a gas (bad pun warning). Maybe this all just the body needing to be kick started again after being shut down over the winter (‘My Body The Car’ song by Godley And Creme)?
Speaking personally I have noticed that the older I get, the more I pick up on. For instance it was not until this year that I started to notice these symptoms and that they might be connected to seasonal change.
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Trying to get better
I have 2, maybe more versions of me that people see. There's the person that has overcome multiple brain surgeries and seizures and is trying to fight through speech impairment, memory, headaches and depression. That person acts as though everything is so much better and she's doing great. That person wants everyone around her to be happy and not worry about her, so she doesn't share what she really thinks.
Then there's the person that is anxious and sad that even though she's doing better she isn't where she used to be, before the seizures got bad again. That person also fights the memories from ptsd, the pain from the headaches, struggles with communication and feels worthless. She has suicidal ideation and every day comes up with a reason to stay alive. That person fights every day to be here and keep going.
I have been honest with my therapist about both. Maybe too honest, maybe i shouldn't have ever told her. I'm not sure she truly believes me (like the kid who called wolf). She asked me if I want to get better. I automatically said yes, because I truly do. Otherwise I wouldn't have this list of reasons to live every day. I wouldn't be seeing specialists and speech therapists, and general therapists. I automatically said yes, but the more I've thought about it the angrier I've become. Why would she even ask me that? Is that normal to ask? I'm very open with her, shouldn't that show how much I want to get better?
I'm not sure what to say to her at my next appointment because maybe I'm misunderstanding why she asked.
#Depression #Anxiety #Epilepsy #SuicidalIdeation #MentalHealth #CommunicationDisorders
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What are we celebrating?! (MARCH)
national developmental disabilities month
Women’s history
National MS Education and Awareness Month
March 1-31: Alport Awareness Month March 1-31: Brain Injury Awareness Month
March 1-31: Brain Tumor Awareness Month (UK only)
March 1-31: Deep-Vein Thrombosis Awareness Month
March 1-31: Malignant Hyperthermia Awareness Month
March 1-31: Multiple Sclerosis Awareness Month
March 1-31: Myeloma Action Month
March 1-31: National Bleeding Disorders Awareness Month
March 1-31: National Cheerleading Safety Month
March 1-31: National Colorectal Cancers Awareness Month
March 1-31: National Endometriosis Awareness Month
March 1-31: National Kidney Month
March 1-31: National Nutrition Month
March 1-31: Problem Gambling Awareness Month
March 1-31: Save Your Vision Month
March 1-31: Trisomy Awareness Month
March 1-31: Workplace Eye Wellness Month
March 1-6: National Aplastic Anemia & MDS Awareness Week
March 2: World Teen Mental Wellness Day
March 3: World Birth Defects Day
March 3: World Hearing Day
March 4: HPV Awareness Day
March 4: World Obesity Day
March 5: Dissociative Identity Disorder Awareness Day
March 7: National Hospitalist Day
March 10: National Women and Girls HIV/AIDS Awareness Day
March 10-16: Patient Safety Awareness Week
March 10-16: Pulmonary Rehabilitation Week
March 10-16: Sleep Awareness Week
March 11-17: Brain Awareness Week
March 14: World Kidney Day
March 15: World Sleep Day
March 17-23: National Poison Prevention Week
March 18-24: National Drug and Alcohol Facts Week
March 20: National Native American HIV/AIDS Awareness Day
March 20: World Oral Health Day
March 21: World Down Syndrome Day
March 24: World Tuberculosis Day
March 26: Epilepsy Awareness – Purple Day
March 26: American Diabetes Alert Day
March 30: National Doctors’ Day
March 30: World Bipolar Day
March 17: Saint Patrick’s Day
March: autoimmune diseases awareness month
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