One woman with Narcolepsy with cataplexy, Fibromyalgia, Rheumatoid Arthritis, Diabetes, Depression, & Neuropathy leads a team of superhero advocates with bravely bringing Invisible Disabilities to light, busting inaccurate stereotypes, Empizizing the masses (her superpower) to inspire empathy and combating ableism everywhere. Unleash your inner superhero!
***A poem I wrote as part of the scrapbook I made as a wedding gift to my Mystery Machine friends Curtiss and Julie Cox. Was it 2003?
Together, we are different eggs in the same basket.
Black and white we create shades of gray.
You can depend on me, no need to fret.
Our love is sure to never fade.
Memories of us fill my mind;
Emotions consume my soul.
I think of our future, though I also like to rewind.
You enhanced my life; Made me whole.
How delighted am I to have you to hold!
Amazed by your enchanting spirit;
Our lives together we shall mold.
Truly for me there is no better fit.
Imagine you're in college, tasting independence for the first time in your life. You're an awesome student, an exceptionally intelligent and hard worker with a keen savviness for social issues. You're able to finally drive and go wherever, whenever you like. Still, there isn't much of any time for true fun if you want to keep up your grades and reputation. You pull several all-nighters each month just to prepare for class and exams. You're one of those everyone expects to provide an awesome and meaningful contribution and inspiration to society. Far beyond your physical age in level of maturity: intellectual, emotional, and spiritual, the average coed activities of your peers seem completely juvenile and unproductive to the matters of the real world at hand.
Help! I'm Paralyzed and being Bombed!
You take your first job working as a lab assistant, but your boss and coworkers always catch you often fall off you're stool in a sudden attack of sleep. You may work for only 3 to 4 hours each weekday, but you are seemingly constantly stuck in a never-ending prison of sleepiness all day long.
Now, it's the year 2001, you're a Junior in college, a week after 9/11, and you still cannot fathom how someone would not only be willing to commit suicide, but also kill hundreds of innocent others who have little direct control of their government all in the twisted name of your religious beliefs. You have nightmares each night: feeling the burning pain of fire and fear of atomic world warfare. Many times you hear it, the intruders in your home; the whispers, footsteps, and the tinkering with your door knobs and opening windows. Many times you see them; black shadowy figures, and feel them torturing you. Meanwhile, you are paralyzed unable to move, speak, and terrified for your life. What the crap is going on, you wonder as you are shaken and often literally shaking in a seemingly endless trap of terror. No, you cannot cry out for help or run away form the stronghold of sleep paralysis and hypnagogic/ hypnopompic hallucinations.
Laughter is to be Feared
A month later you begin to feel the oddest, most uncomfortable sensation in your knees when you laugh or feel angry. It's like you feel your knees giving out, wobbling like you're going to fall down as the sensation of pins and needles sprouts throughout the lower portion of your body. So strange, you fret what could be wrong, but have no earthy idea what the crap could be sucking the health and livelihood of your youth from you like some demonic parasite. It's December, and now your body often goes into a complete body collapse of conscious complete body paralysis, much like a puppet having its strings cut. Please, you warn your family and friends, don't tell me any jokes, I will have cataplexy. You try to explain to prepare them, but nothing can prepare you or them for the ridiculously dramatic panic they go into when witnessing cataplexy, esp. the first couple times. They're like, what kind of fool word is Cataplexy? You fall asleep while opening Christmas presents, riding in and driving a car, watching TV, and even during discussions.
Open Your Eyes to Narcolepsy
By this point in your hellish disaster, you discover online that cataplexy is indicative of Narcolepsy and that you have its life destroying full tetrad plus of symptoms: Excessive Daytime Sleepiness, Cataplexy, Sleep Paralysis, and Hypnagogic/ Hypnopompic Hallucinations. Not to mention the other lesser symptoms Automatic Behavior, Disrupted or Fragmented Nighttime Sleep, and Chronic Fatigue. It's the finding an insurance policy that covers sleeping disorders and a doctor willing to order a sleep study that's the even more challenging problem.
A photo posted by Rachel Nesmith (@sleepyamericanhero) on
My superhero Narcolepsy Advocates and I stand up to the Media's Inacceptable Portrayal of Narcolepsy Out of Love for the 1500 Undiagnosed, Newly Diagnosed, as well as Vulnerable Persons With Narcolepsy in the USA. The navy seal advocates I belong to got the Narcolepsy Network community and organization to realize this opportunity. The opportunity to re-educate the world. we hate terrible stereotypes, we must change this so that no more young folks onsetting and oblivious to why they cannot remain upright or standing with laughter, or why they experience alien attacks and abduction, torture by ISIS thinking they are going nuts when in reality its the always abandoned on narcolepsy media puns cataplexy, sp, and HH.
We were not boo hoo hurt by CaptainREMmer's comments, but annoyed that this is still going on. At least my approach is to inspire empathy with snarky humor and transformative analogies(Inception on Elm St). This movement is not just to re-educate mainstream America, but more importantly help people whom fail to associate Cataplexy, sp, hh as symptoms of narcolepsy. They blow off there EDS as sleep deprivation, exhaustion from school,work ,denial,etc. I was so lost and confused re cataplexy in 2001. For a full two months after realizing I had a sleep paralysis major problem and experiencing my knees giving at laughter.... I was terrified and ignorant, searching online for answers until I came across the definition of cataplexy and that its exclusive of narcolepsy on a sleep paralysis site.
I honestly don't need an apology, just the media to get our wake up call. My tweet helped NN realize what was going on. I love our Advocacy Team -SpecialOpps: Sharon Denise Remo Stu Carpenter Michelle Hernandez Viv M. Reese especially worked hard to get this done. Sleepy American is my real online name, and I live for advocacy and empathetic re-education. They are always looking out for all of us. It's not out about being hurt or super angry, it is About Time mainstream media Did Narcolepsy Right!
The Tweet which alerted Narcolepsy Network to Respond #narcolepsyisnotasuperpower
For me its what the world sees in real life as experience narcolepsy vs the crazy paralysis symptoms...and hallucinations shown in the mirror.
As Sleepy American, apart from re-educating the mainstream with co-advocates, I use my EMPATHIZER to not only project symptoms of Narcolepsy like cataplexy induced extended sleep paralysis, but also all other invisible chronic illnesses. Or so the fantasy goes... We have to find humor and ways, as well as opportunities to start the conversation, such as Mr.Jeremy Renner's comments. REAL Narcolepsy is NOT spontaneous fairytale naps- more like being waterboarded on Inception Living on Nightmare on Elm St. #narcolepsy
We are still waiting for an appropriate response by Jeremy Renner, Live with Kelly and Michael. On Monday, Jimmy Kimmel is Kelly's first guest coHost. I have reached out to Kimmel(PWN) to do Narcolepsy right while on the show. To the short list to Real 'PWN' Superheros, I would definitely include Sharon Remo, Stu Carpenter, Michelle Hernandez, and myself whose collective first response efforts grabbed the attention and inspired action by the Narcolepsy Network. Our collective efforts are desiring for a full representation of the symptomatology of Narcolepsy. Granted my humor is a big part of style, it is meant as an attention getter, but mostly a small comfort for us PWN unified by our cause. Viv M. Reese is heading a campaign re-educating a horrendously incorrect segment, including a doctor's appearance, on a morning show in her Costa Rica. She is a true trailblazer!
The Very Inaccurate Clip Viv Reese is heading Costa Rica's Narcolepsy Awareness (Spanish)
It is amazing some PWN can work and drive, PWN like myself simply don't know your world. Our best foot forward usually involves more brief moments of lucidity in daily life, followed by frequent cataplexy, sleep paralysis with or without Hypnagogic Hallucinations. For us battling severe narcolepsy and cataplexy(my biggest being laughter and fighting sleepiness) as well as other chronic illnesses is a huge obstacle to getting anything achieved. Medications have helped lessen the severity of my cataplexy, sleep paralysis, but not the frequency of its incidence... instead of breaking a foot, I slam my nose. For those like us, our passion, our job is Narcolepsy, Disability Advocacy. Until Cataplexy and Sleep Paralysis are part of our stereotype... Keep Pushing!
If you really want my "superpower", we can make your Dream Come True!!! Temporary or Permanent Narcolepsy and All our wondrous 'superpowers"? Temporary? Stay up 72hrs... absolutely NO sleeping allowed NO napping no snoozing no fantasizing about sleep....Now the fun begins... Take 20 Belsomra's every 4 hours over the next week, remember...no napping during the day or we will poke you each head bobble... Mid week under this regimen, the jokes will come...can you take Cataplexy, or are you not strong enough for Cataplexy? Oh can you hear us laugh how you just passed out asleep? Even Though you are fighting conscious paralysis trying to yell at us now you can hear all we say? Oh, no Jeremy Renner..,.. why stop now when OUR fun has just begun???
If you truly enjoy your test drive brought to you by True Super Badass Superhero Advocates with Narcolepsy, you can purchase your Superpower of choice for the discount bargain price of 15yrs of your vitality and our on site Neurosurgeon will remove or cauterize 80,000 Hypocretin/Orexin secreting neurons in the posterior and lateral hypothalamus. Once we remove your sutures post healing following neurosurgery, you are now in possession of a formidable superpower! Don't you just love being stuck in realistic nightmares unable to move or scream but aware of your inability to move? Aww now you, too can experience #our narcolepsy spa experience!
An Advocating BADASS and TRUE SuperHero for persons with Chronic Invisible Illness! (Sleepy American) *** Via Empathic Understanding, Hardships, challenges, loss, and more loss and sad times.... I have used to build me into the amazing person I am now.
Trade narcolepsy with different ailments, and repeat the substituted disease with REMmer's ignorant statement... Mike asks,'If you could have a super power, what would it be?" REMmer replied with a smirk,"I think I want a new one. What is it... ca...can..." Kelly Rippa,"Cancer" "Yes, I wanna be Captain Cancer!" Bwaha Ha Ha! Everyone... Ha ha ha.."
Yes, I wanna my body to uncontrollably multiply metastatic mutant cells which let me slowly painfully die strapped to Chemo IVs~!" Kelly-- Yes my granny had Stage four breast cancer... Swift killer, expensive, too...quite the formidable Super Power!." Ha ha ha ha ha! "
HELL NO NOT FUNNY!!! Narcolepsy is NOT a superpower, narcolepsy is NO Joke! Care to substitute Autism for Narcolepsy above? Parkinson's? Alzheimer's? Did not Think so.... You're welcome... as the one the ONLY Sleepy American Saves the Day! Jeremy Renner... KellyandMichael... We are not Laughing!!! Get Narcolepsy Right!
Hope your Mother's Day was a wonderful as my Day was! Narcolepsy network advocacy challengers short of the sight we are fighting for the same things-educating the masses so that someone who is experiencing cataplexy, sleep paralysis, hypnagogic hallucinations- severe intruding onto their life-- lives on for years convinced they are going crazy, and as a result never get a correct diagnosis until their middle aged. Who have seen Narcolepsy constantly portrayed as a Magical fairytale nap land of spontaneous restful sleep.
Narcolepsy is not a Super Power. Narcolepsy; however, does shape our character via challenges,empathic understanding, patience,hardship,etc. Super Heroes as Individuals, oh YES we are! Wednesday, while a guest on Live! with Kelly and Michael @KellyandMichael Jeremy Renner @renner4real was wrong to say Narcolepsy sleep attacks are a Superpower he wants. Cancer is not a superpower to dream of getting... but persons bravely fighting cancer? huge superheros.
In regards to those fellow persons with Narcolepsy whom are against our advocacy of correct stereotypes in regards to our disorder, and wish I do absolutely nothing in regards to Jeremy Renner's joke at our expense, I will press on. I am not horribly hurt by most insensitive remarks about Narcolepsy. We are on a mission to protect Narcolepsy Newbies from hearing such remarks... a child, teen recently or not yet diagnosed youngster. Society has a responsibility to protect our children, teens. Many are not even diagnosed, nor does the majority experience cataplexy, know what it is, nor do they know to associate such with Narcolepsy. The world only knows us as casual spontaneous, sometimes lazy nappers. The world really needs to know Narcolepsy is More. We're Team Sleepy... More than a decade est. on Myspace Strong. Choose your Superhero name ;p the other pwn team calling us crybabies are team Snoozy! Sleepy American: Civil War
I understand hopelessness, even at one point summer of 2010 I was waiting for my liver to explode and die... I was 29 and begging for help removing a cantaloupe sized Hepatic Adenoma from my liver. I begged and begged for a 400k surgery for a very rare liver tumor caused by female hormones. Esp. for my age, I have been thru the wringer, suffered horrific emotional pain when my now ex-husband abandoned me 2009 only a week from eviction, as well as physical pain from multiple health problems, several chronic: Severe Narcolepsy with all profound tetrad symptoms, ie extended cataplexy-induced sleep paralysis with Hypnagogic hallucinations is typically a weekly or more occurrence(6-7pm yesterday most recently), Fibromyalgia, Rheumatoid Arthritis, Diabetes type 2, ., Mitral Valve Prolapse Syndrome, Clinical Depression, regular Panic Attacks, chronic Hepatic Adenomas(2 liver resections), Urinary Incontinence...its overwhelming to explain, let alone experience.
Every social movement comes across obstacles. Mainstream used the n word referring to African Americans, and now I almost never that word on Television, movies. PC is to protect those most hurtable... kids, newbies. It's the right thing to do. Old trick are difficult to transform, evolve. God carried me thru the worst part of my life(2007-2010) to the season of life I lead now.
Narcolepsy network advocacy challengers short of the sight we are fighting for the same things-educating the masses so that someone who is experiencing cataplexy, sleep paralysis, hypnagogic hallucinations- severe intruding onto their life-- lives on for years convinced they are going crazy, and as a result never get a correct diagnosis until their middle aged. Who have seen Narcolepsy constantly portrayed as a Magical fairytale nap land of spontaneous restful sleep.
Narcolepsy is not a Super Power. Narcolepsy; however, does shape our character via challenges,empathic understanding, patience,hardship,etc. Super Heroes as Individuals, oh YES we are! Wednesday, while a guest on Live! with Kelly and Michael @KellyandMichael Jeremy Renner @renner4real was wrong to say Narcolepsy sleep attacks are a Superpower he wants. Cancer is not a superpower to dream of getting... but persons bravely fighting cancer? huge superheros.
Sleepy American: Civil War.... Let's wave the white flag before one of us dies from a cataplexy fall.
I have a Dream that One day my on TV/movie stars with Full Tetrad Narcolepsy will Tell their story on TV. Julie Flygare is our superstar of Gen Y Persons succeeding with Narcolepsy whom has appeared on TV. Successful PWNs mentioned are amazing! MY Dream is that the other symptoms besides EDS, the ones which took a lot of life away from us, become associated with N in the public arena just as well.
Ginger Zee is great, I talked to her on live feed a few weeks ago, we were diagnosed the same time of our lives, same age, 2001. She has sleep attacks, not any cataplexy, etc. She said her N was mild... same as Kimmel has said to reporters before. I love when pwn succeed! I wish Ginger,Jimmy, Kelly's husband Mark, even anyone on TV, Movies to attach correct stereotypes of Narcolepsy's being about sleepiness, and every REM associated symptom in our Tetrad. When I list names, I mean just those names specifically. Kimmel, Ginger Zee,Cobain- the only ones I named, I mean them specifically, not a generalization of persons with a successful career whom did so despite having Narcolepsy. I am referring to ONLY household mainstream on the big or little screen regularly celebrities with Narcolepsy. I have requested, wished that Kimmel or Ginger anybody on TV join in and use some of their fame to help us associated Narcolepsy with Cataplexy, Sleep Paralysis,and Hypnagogic Hallucinations... even automatic behavior for the USA, world. I want for when Narcolepsy is mentioned I don't universally get that nails on chalkboard response, "Oh, that's when you just fall asleep anywhere, often, like Deuce Bigalow, Ha ha." I I have a dream someday my Orexin producing humans will fully know and comprehend the full implications of a life of those without Orexin producing Neurons. Honestly by hardships I can check so many of our posts to my own losses. Very painful, at times lonesome, scrary, frustrating, infuriating.... and in the rebuilt self from our ashes... something beautiful can be molded shining brilliantly in to the lives of others losing hope, feeling alone. I can laugh at narcolepsy, but in a way only a pwn can, thru my eyes. Usually it include sarcasm at the world's reactions to us.
You have what it takes to Inspire Empathic Understanding as a person with an invisible disability Super Stars. We can Join MLK, Jr in championing patient advocacy and civil rights ~ All it takes is a little Spark!
I have a Dream that One day my on TV/movie stars with Full Tetrad Narcolepsy will Tell their story on TV. Julie Flygare is our superstar of Gen Y Persons succeeding with Narcolepsy whom has appeared on TV. Successful PWNs mentioned are amazing! MY Dream is that the other symptoms besides EDS, the ones which took a lot of life away from us, become associated with N in the public arena just as well.
Ginger Zee is great, I talked to her on live feed a few weeks ago, we were diagnosed the same time of our lives, same age, 2001. She has sleep attacks, not any cataplexy, etc. She said her N was mild... same as Kimmel has said to reporters before. I love when pwn succeed! I wish Ginger,Jimmy, Kelly's husband Mark, even anyone on TV, Movies to attach correct stereotypes of Narcolepsy's being about sleepiness, and every REM associated symptom in our Tetrad. When I list names, I mean just those names specifically. Kimmel, Ginger Zee,Cobain- the only ones I named, I mean them specifically, not a generalization of persons with a successful career whom did so despite having Narcolepsy. I am referring to ONLY household mainstream on the big or little screen regularly celebrities with Narcolepsy. I have requested, wished that Kimmel or Ginger anybody on TV join in and use some of their fame to help us associated Narcolepsy with Cataplexy, Sleep Paralysis,and Hypnagogic Hallucinations... even automatic behavior for the USA, world. I want for when Narcolepsy is mentioned I don't universally get that nails on chalkboard response, "Oh, that's when you just fall asleep anywhere, often, like Deuce Bigalow, Ha ha." I I have a dream someday my Orexin producing humans will fully know and comprehend the full implications of a life of those without Orexin producing Neurons. Honestly by hardships I can check so many of our posts to my own losses. Very painful, at times lonesome, scrary, frustrating, infuriating.... and in the rebuilt self from our ashes... something beautiful can be molded shining brilliantly in to the lives of others losing hope, feeling alone. I can laugh at narcolepsy, but in a way only a pwn can, thru my eyes. Usually it include sarcasm at the world's reactions to us.
You have what it takes to Inspire Empathic Understanding as a person with an invisible disability Super Stars. We can Join MLK, Jr in championing patient advocacy and civil rights ~ All it takes is a little Spark!
I have a Dream that One day my on TV/movie stars with Full Tetrad Narcolepsy will Tell their story on TV. Julie Flygare is our superstar of Gen Y Persons succeeding with Narcolepsy whom has appeared on TV. Successful PWNs mentioned are amazing! MY Dream is that the other symptoms besides EDS, the ones which took a lot of life away from us, become associated with N in the public arena just as well.
Ginger Zee is great, I talked to her on live feed a few weeks ago, we were diagnosed the same time of our lives, same age, 2001. She has sleep attacks, not any cataplexy, etc. She said her N was mild... same as Kimmel has said to reporters before. I love when pwn succeed! I wish Ginger,Jimmy, Kelly's husband Mark, even anyone on TV, Movies to attach correct stereotypes of Narcolepsy's being about sleepiness, and every REM associated symptom in our Tetrad. When I list names, I mean just those names specifically. Kimmel, Ginger Zee,Cobain- the only ones I named, I mean them specifically, not a generalization of persons with a successful career whom did so despite having Narcolepsy. I am referring to ONLY household mainstream on the big or little screen regularly celebrities with Narcolepsy. I have requested, wished that Kimmel or Ginger anybody on TV join in and use some of their fame to help us associated Narcolepsy with Cataplexy, Sleep Paralysis,and Hypnagogic Hallucinations... even automatic behavior for the USA, world. I want for when Narcolepsy is mentioned I don't universally get that nails on chalkboard response, "Oh, that's when you just fall asleep anywhere, often, like Deuce Bigalow, Ha ha." I I have a dream someday my Orexin producing humans will fully know and comprehend the full implications of a life of those without Orexin producing Neurons. Honestly by hardships I can check so many of our posts to my own losses. Very painful, at times lonesome, scrary, frustrating, infuriating.... and in the rebuilt self from our ashes... something beautiful can be molded shining brilliantly in to the lives of others losing hope, feeling alone. I can laugh at narcolepsy, but in a way only a pwn can, thru my eyes. Usually it include sarcasm at the world's reactions to us.
You have what it takes to Inspire Empathic Understanding as a person with an invisible disability Super Stars. We can Join MLK, Jr in championing patient advocacy and civil rights ~ All it takes is a little Spark!
I have a Dream that One day my on TV/movie stars with Full Tetrad Narcolepsy will Tell their story on TV. Julie Flygare is our superstar of Gen Y Persons succeeding with Narcolepsy whom has appeared on TV. Successful PWNs mentioned are amazing! MY Dream is that the other symptoms besides EDS, the ones which took a lot of life away from us, become associated with N in the public arena just as well.
Ginger Zee is great, I talked to her on live feed a few weeks ago, we were diagnosed the same time of our lives, same age, 2001. She has sleep attacks, not any cataplexy, etc. She said her N was mild... same as Kimmel has said to reporters before. I love when pwn succeed! I wish Ginger,Jimmy, Kelly's husband Mark, even anyone on TV, Movies to attach correct stereotypes of Narcolepsy's being about sleepiness, and every REM associated symptom in our Tetrad. When I list names, I mean just those names specifically. Kimmel, Ginger Zee,Cobain- the only ones I named, I mean them specifically, not a generalization of persons with a successful career whom did so despite having Narcolepsy. I am referring to ONLY household mainstream on the big or little screen regularly celebrities with Narcolepsy. I have requested, wished that Kimmel or Ginger anybody on TV join in and use some of their fame to help us associated Narcolepsy with Cataplexy, Sleep Paralysis,and Hypnagogic Hallucinations... even automatic behavior for the USA, world. I want for when Narcolepsy is mentioned I don't universally get that nails on chalkboard response, "Oh, that's when you just fall asleep anywhere, often, like Deuce Bigalow, Ha ha." I I have a dream someday my Orexin producing humans will fully know and comprehend the full implications of a life of those without Orexin producing Neurons. Honestly by hardships I can check so many of our posts to my own losses. Very painful, at times lonesome, scrary, frustrating, infuriating.... and in the rebuilt self from our ashes... something beautiful can be molded shining brilliantly in to the lives of others losing hope, feeling alone. I can laugh at narcolepsy, but in a way only a pwn can, thru my eyes. Usually it include sarcasm at the world's reactions to us.
You have what it takes to Inspire Empathic Understanding as a person with an invisible disability Super Stars. We can Join MLK, Jr in championing patient advocacy and civil rights ~ All it takes is a little Spark!
Here is my post to @Renner4Real Jeremy Renner Narcolepsy is NOT a super power! Well, of course unless collapsing falls every time you feel emotion, esp. laughter (cataplexy), Conscious Paralysis while trying to sleep (sleep paralysis), or the ever horrifying Hypnagogic Hallucinations are what you are referring to... #CaptianCataplexy #Narcolepsyisnotasuperpower Rem sleep intrudes upon the wakeful hours in the brains of persons with Narcolepsy, Hence Jeremy Renner says he wants to be #CaptainNarcolepsy, I say lets PUN his name... #CaptainRemmer #Captain America
Narcolepsy Network~ Advocacy is happening, regardless of your involvement! Lots of us PWN united independently unless you step it up... after all, my Web Name and ID is Sleepy American.
So you have a brand new little blessing in your life! How exciting! You are also apprehensive if you can handle Motherhood living with a chronic illness. I was there, 18 months ago when my Savannah was born! I have several chronic illnesses: Narcolepsy with Cataplexy, Fibromyalgia, Rheumatoid Arthritis, Diabetes Type 2, and chronic Hepatic Adenomas. Each illness has shaped who I have become today... and I am phenomenal- and so are you! Motherhood is tough in and of itself! We, however, are Superheros!
The Special Moment
March 27, 2014 My family surrounded my hospital bedside just minutes from my second liver resection to remove a growing hepatic adenoma from my liver. Suddenly, my nurse exclaimed,”Is there any reason you could be pregnant?” My surgery was canceled, I was 5wks into a very high risk pregnancy. Finding an OBGYN willing to help me was challenging, but when I did it made all the difference! Every week I went to Dr. Jeff Livingston's office for monitoring my blood sugar, and consulting with Dr. Dhiresh Jeyarajah about my hepatic adenoma monthly. I had to stop/substitute several prescriptions, as well.
A Narcoleptic Pregnancy
I wondered if I could handle being a mom, unable to drive, having to take naps, control cataplexy, with a baby. Other people worry, too. People whom its none of their business to care about my abilities. Get all of your prescriptions listed and a folder for all pertinent documents, shot records, hospital admissions, and insurance cards in a clearly labeled expandable folder. Knowing where your papers are saves much time and stress. November 3rd, Savannah was born via cesarean section, at 37wks gestation. Due to both of my doctor's advice, I had a tubal ligation, as more pregnancies would prove even riskier. Perfect lil one spent 4 days in the NICU until she could wean off her glucose IV and control her insulin levels. My incision infected, and I was not discharged for several more days. I was so sad to be separated from my baby as she was discharged 3 days before I was, with her Dad. She did visit me several times, but I still missed her very much. I had it planned out in my head... the perfect Mom, Dad, Baby going home at the same time, but the unexpected happened... my diabetes and surgical site infection required further hospitalization. The most important thing to remember is to be patient and accepting that perfection is impossible, we will be inconvenienced, and in pain, but rest assured, our doctors typically only want what is best for your and baby's health.
1st Time I Held Newborn Savannah(NICU)
Taking Savannah home was wonderful and challenging. We had so much fun everyday together. She slept beside me in her monkey bed, and every two hours she awoke hungry, needing changing. The times I took medication 3 times a night weren't always the same times. Most times I instantly woke to her cries, other times my husband woke to tend her. You have to work as a team, so that you don't get burned out, even though still today, I put my own needs last. When she is needing food, changes, cuddles, I usually eat last, sleep less, fight to find a break to take my many prescriptions in the morning, midday, and night. A nice hot shower is a huge luxury, because unless Savannah is asleep or with another adult, she screams and cries. Sometimes I have been in sleep paralysis, and I could feel Savannah crawl over me, hear her coos, but I couldn't move. Other times out of sheer muscular pain and sleep deprivation I broke down and cried. It's all so worth the inconvenience, to be honored to love this little angel given to us.
I finally developed this amazing bond and a great daily routine, rhythm with Savannah. I waited several months to remove one of my hepatic adenomas which were growing. On March 6, 2015, when Savannah was 4 months old, I had my second liver resection. Liver Resections are the most intensely difficult surgeries to recover. I remember embracing Kerry and Savannah before being taken to the Operating Room. I woke in lots of pain in the surgical ICU. Savannah came to see me several times, living with my parents most that week. I feared she would forget me, and I emotionally needed her in my most excruciating moments in ICU. My heart broke saying goodbye each time. ICU is my least favorite place in any hospital...It took the hospital 4 whole days to get my narcolepsy and cataplexy medications approved and administered accurately. When it comes to my narcolepsy, two days without Xyrem and Effexor my cataplexy, sleep paralysis, and hypnagogic hallucinations consumed 80% of my entire 24hr day. Consumed, tortured with conscious paralysis with very realistic nightmares. I was terrifyingly confused about which sounds and images were real vs a nightmare. My parents had to fight to get it straightened out with the hospital. I could not wait to get home. My advice is to list all your doctors,their specialties, your medications and their amounts, surgeries, and health conditions together on a word file, and carry several copies at any given time to give to healthcare personnel.
Last Embrace before 2nd Liver Resection
When I returned home and to being Savannah's primary caregiver, I was very sore, and almost started from scratch building back to where we were before the surgery. I would feed Savannah in her stroller/carseat, limited picking her up. Slowly, my strength returned as we watched Savannah grow, smile, jump in her jumper. Getting back on all my before pregnancy prescriptions made my confidence in safely caring for Savannah. I have an excellent support system: Kerry, his Mom and sister, My Mom and my Dad are almost always available to help Savannah and I get what we need, where we need. Social Services were concerned before my surgery that I may be unfit to be Savannah's care taker. After recovering from my liver resection, the case was determined unfounded. It really bothers me that the state can try to take your kids just because someone whom does not understand your disability and health issues charges that you are too sick to be the primary caregiver.
Savannah and her parents at 6mo.
By this time, I knew I'm a great Mom! I risked my very life by carrying her to term! Above and beyond most! The chronic pain, Narcolepsy's sleepiness and paralysis episodes, I deal with daily, but still shine! What regular person can truly understand chronic pain, extreme narcolepsy? How we deal? Not many, however, this doesn't stop them from making their marginalizing opinions from being know... Try to ignore all negativity. I have the authority to be heard as a disabled Mom, and you are nothing short of Amazing!
To the Hospital Social Worker whom tried to take my child... my child is thriving. To strangers or even family whom think I couldn't succeed at motherhood, too bad, so sad... I shine brilliantly at Motherhood doing the very best I can, with what I have, with the empathetic understanding worthy of a Gold Medalist.
Savannah and I when she was 9mo.
New motherhood was very challenging, still takes a lot of my energy, but is the most rewarding role I play in life. It is shocking to me how much energy and effort being a hand's on Mom whom is always starving for sleep and in pain we spend to get our job as mom done well. Our empathic abilities makes us excellent humans as well as parents, as our human connectedness goes above average confines. It is still a shock that such a beautifully healthy energetic child was grown inside my weak, broken body. I am amazed how I was able to form a brilliant piece of sunshine the world would have never seen if I never bravely faced the negative doubters and wake each day I am Savannah's Mom living each day as proof they are wrong!
Valentine's 2016
Now Savannah is 18months, getting into everything her hands can get into and make messes. I definitely get more exercise chasing Savannah! She loves to pick up hair clips, the computer mouse, highlighters, brushes, straws, etc. and carry them to you, offering them wanting you to accept as a gift. She is exceptionally sweet, curious, accepting, healthy, and loving. She fills my heart with love.
My recommendations for new moms and new moms-to-be? Listen to yourself... your body, your strength, your beliefs. Stay positive and ignore negativity, especially ignore ignorant negativity. Rest often! Don't feel bad if you can't stop all your medications while pregnant nor breast feed if you must take your medications to be the best Mommy possible! Any accommodations or adaptations you need to make or take, do so without reservation. Love is the most vital thing your child needs to be healthy, more than food and shelter. Newborns are easier to keep safe, as toddlers are all over the place and mobile! Keep a quiet home, limit visitors the first few months, but don't hesitate to request help when you need it! Take care of yourself, and share parental duties with your partner/spouse. Most of all, know you are never alone, us chronically ill Moms have what it takes to raise amazing people whom will bring brilliantly caring hearts to our world.
